ME/CFS: Past, Present and Future

WilliamWeir 1,* and Nigel Speight 2

Abstract: This review raises a number of compelling issues related to the condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Some historical perspective is necessary in order to highlight the nature of the controversy concerning its causation. Throughout history, a pattern tends to repeat itself when natural phenomena require explanation. Dogma usually arrives first, then it is eventually replaced by scientific understanding. The same pattern is unfolding in relation to ME/CFS, but supporters of the psychological dogma surrounding its causation remain stubbornly resistant, even in the face of compelling scientific evidence to the contrary. Acceptance of the latter is not just an academic issue; the route to proper understanding and treatment of ME/CFS is through further scientific research rather than psychological theorisation. Only then will a long-suffering patient group benefit.

The history of human civilisation is littered with examples of natural phenomena, including human disease, initially explained by dogma. The dogma is initially created to fill a void in comprehension, but it is eventually replaced by rational scientific understanding. The creators of such dogma are often authoritarian, hierarchical figures who then ferociously defend their own creation. The classic manifestation of this was what Galileo encountered when he proposed, on the basis of careful observations through the new technology of the telescope, that the planet was not the centre of the solar system. Despite the scientific validity of his observations, he was threatened with torture by the Catholic inquisition if he did not recant. He was speaking truth to a powerful establishment, and the conflict came to a head in 1633, when, under severe duress, he was forced to withdraw his heretical ideas. The Catholic church reprieved him eventually, but not until 1992. Galileo’s difficulties with the Catholic church are a good early example; he spoke scientific truth to authoritarian power and suffered the consequences.

There are similar examples of this pattern in medical history. Ignaz Semmelweis, working in an obstetric ward at the General Hospital in Vienna in 1846 noticed the large difference in mortality from puerperal fever between a ward where birthing women were attended by midwives, and another where the women were attended by doctors and medical students. The latter divided their time between the autopsy room and the ward. Semmelweis observed that the midwives washed their hands between deliveries, whereas the doctors and medical students did not, even after performing autopsies on the victims of puerperal fever. The patients attended by the doctors and medical students died, embarrassingly, more frequently from puerperal fever, and Semmelweis recognised correctly that a noxious agent was being transmitted from the autopsy room by unwashed hands. The precise cause, in the light of current scientific understanding, is now blindingly obvious. Unfortunately, for Semmelweis, this was before the discovery of disease-causing microbes. His medical colleagues, lacking Semmelweis’ insights, were greatly offended by the implication that by not washing their hands, they were somehow responsible for the excess deaths. Consequently, he was hounded out of his post. He was ahead of his time, but nowadays he can be rightly regarded as a hero, having spoken truth to power, as Galileo did, at great personal expense.

John Snow’s scientifically correct perceptions of cholera transmission were also up against a contemporary dogma. In 1855, he published his treatise, which found that the cause of cholera was spread through drinking water. What he wrote has stood the test of time and is now regarded as a model of scientific validity. He recognised that drinking water from known sources was the cause, and he was persistent enough to collect the data to prove this by undertaking painstaking house-to-house visits through the streets of London. Nonetheless, nearly 30 years elapsed before Robert Koch demonstrated the presence of Vibrio cholerae on the gut-lining of cholera victims at autopsy, having also been able to demonstrate the presence of this microbe in drinking water. At the time of Snow’s publication, however, the prevailing dogma was that cholera was spread by rotten smells— “miasmata”—from dead bodies and rotting vegetable matter. Predictably, prominent members of the Royal College of Physicians at the time, declared Snow’s work “untenable” because their dogma was being challenged.

This collective mindset meant that contemporary management of cholera was equally wide of the mark. Bloodletting and rectal infusions of mutton puree were among the conventional mainstream treatments. The latter was probably challenging given the profuse diarrhoea of cholera. Furthermore, contemporary survival from cholera was seen to be rather better at the London Homeopathic Hospital where patients were spared the lethally inappropriate practice of bloodletting. One of the main pathological characteristics of cholera is reduction of circulating blood volume due to the diarrhoea, causing massive salt and water depletion. Further reduction of blood volume by bloodletting certainly hastened the death of such patients.

Additional examples of the medical profession “getting it wrong” have continued since this time. General Paralysis of the Insane—a manifestation of tertiary syphilis—and multiple sclerosis were both considered to have a psychological basis [1] until the true physical basis was discovered. There are other examples: the tremor of Parkinson’s disease had been attributed to “the expression of the moralistic man’s suppressed desire to masturbate” [2] but we now know this to be untrue. More recently, the proposition that Helicobacter pylori infection could be the cause of peptic ulcers was up against the dogma that psychological stress was the major contributor. Hitherto, the presence of this strange organism in the stomach lining was regarded as insignificant, but trials with antibiotic therapy effectively refuted this idea, and the treatment of peptic ulcers was dramatically improved [3]. All of these examples illustrate a tendency to assume that, if no pathological mechanism can be demonstrated, then, by default, psychological disorder must be the problem. Inherent in such an assumption is the arrogant belief that routine laboratory tests infallibly exclude physical disorder.

The story of ME/CFS is a prime example of such dogma. Due to the fact that routine laboratory tests for the diagnosis of this condition usually produce “normal” results, the problem must be with the psyche. One of the foundation stones of this dogma was a paper published in the BMJ in 1970 in which the cause of the famous Royal Free outbreak of ME/CFS in 1955 was attributed to “mass hysteria”. The authors did not interview any of the patients, nor any of the doctors involved; nonetheless, it seemed clear to them that the outbreak was due to mass hysteria because the majority of victims were women [4]. The background to this piece of sophistry was, and remains, the fashionable medical culture of linking physical symptoms to a psychological disorder. Mind and body are highly interactive, and certainly there are conditions in which psychological distress expresses itself with physical symptoms. Even so, there are many human diseases and infirmities in which the primary driver is physical pathology, with psychology playing a minor secondary role, if at all. Nevertheless, the psychological cognoscenti have not let this principle inhibit their wide-ranging suppositions about the role of psychology in the human condition. The result has been some very wild adventures in psychological theory. For example, a famous 20th century French psychologist once suggested in all seriousness that an erect penis could be expressed algebraically as the square root of minus one [5]. To his disciples, this was “boldly transgressive thinking”, but most sane mathematicians of either sex will have been baffled, not least because in conventional mathematics, minus one does not have a square root. Nonetheless, a culture of similar nonsense has set the scene for equally fantastic theorisation concerning other manifestations of the human condition, including the cause(s) of ME/CFS.

As with previous examples of medical dogma, the belief that ME/CFS is “psychological” will eventually be consigned to the dustbin of medical history, alongside miasma theory and suchlike. Compelling evidence of physical causation is now accumulating but the authoritarian cabal who promoted the psychological dogma are even now trying to defend it in the face of irrefutable scientific evidence to the contrary. History repeats itself, to coin a phrase, given the stories of Galileo, Semmelweis and Snow, and the cabal referred to, do not yet recognise how badly placed they are in the historical narrative of ME/CFS. In some circumstances, the tendency of exponents to hold on to their dogma is reminiscent of the tenacious way conspiracy theorists are wedded to their particular false narrative. Sadly, the argument over the cause of ME/CFS would probably have remained academic but for one grim reality: treatment based on psychological dogma has damaged patients, some very severely.

Due to the fact that ME/CFS was due, amongst other things, to “abnormal illness beliefs, buried guilt and negative thoughts”, the psychological advocates have always advised treatment intended to correct disordered psychology and its presumed consequences. The muscular weakness of ME/CFS was seen as simply due to “deconditioning” because of inactivity secondary to exercise phobia. Graded Exercise Therapy (GET) was, therefore, the answer, and abnormal illness belief and exercise phobia could be managed with Cognitive Behavioural Therapy (CBT). Both of these techniques have been widely promoted, supported in particular by the PACE trial [6], an egregious and expensive exercise in scientific sophistry whose methodology was so seriously flawed that it is now used as an example of how not to conduct scientific studies [7].

The damage caused by GET, in particular, has unfortunate historical precedents. As previously stated, bloodletting was particularly dangerous for cholera; likewise GET has caused significant harm for many ME/CFS patients, frequently consigning modestly mobile patients, adults and children alike, to a prolonged, bedbound, nasogastric-tube-fed existence. If GET were a drug, it would have been banned rapidly by the appropriate regulatory body, but in the UK, there is no such regulatory body for non-pharmacological treatments. This should be within the remit of the General Medical Council, but despite one of their stated functions being to “protect patients”, many patients have been harmed in the way described.

In respect of children in the UK with ME/CFS, the psychological dogma has been particularly harmful. The UK paediatric establishment has not recognised the physical nature of the incapacity caused by ME/CFS. It has become increasingly fashionable in British paediatrics to apply the terms “Medically Unexplained Symptoms” (MUS) and “Perplexing Presentations” (PP) under the much wider umbrella of “potential Factitious Illness (FII)”, on the specious grounds that if the doctor concerned cannot make a diagnosis, it is likely that the mother is “colluding” with her child’s symptoms. Families of children with ME/CFS are particularly at risk of being trapped in such accusations, due to the dogma-led belief in psychological disorder when all routine tests are normal. As a result of this, children with ME/CFS have sometimes been removed by social services from the security of their own home. This can then be followed by grotesquely inappropriate treatment, one extreme example of which involved a severely impaired 12-year-old boy being left unsupported, deliberately, in a hydrotherapy pool. The intention being to force him to swim, thus revealing that he was physically unimpaired and had to overcome his abnormal illness beliefs and negative thoughts about his true physical capabilities. In reality he was so physically weak that he nearly drowned, unwittingly re-enacting the medieval test for witchcraft.

There are other examples in which non-existent psychological disorder was suspected: a teenage girl with severe ME/CFS was once visited at home by her GP. He said, “Now we are going to get to the bottom of the secret phobias that are causing your illness”. The girl answered, “but I don’t have any secret phobias”, to which the doctor replied, “that’s the thing about secret phobias, you don’t know you’ve got them until we dig deep enough.” In some egregious instances, children with ME/CFS whose condition predictably worsens with GET become bedbound. They then have an alternative diagnostic label applied, such as “Pervasive Refusal Syndrome.” The skewed logic being that GET always helps ME/CFS; if it does not, the initial diagnosis of ME/CFS must have been wrong.

Mention has already been made of recognisable pathological abnormalities in ME/CFS, effectively rebutting the dogma of psychological causation. Even now the aforementioned authoritarian cabal continue to ignore or possibly regard such abnormalities as “downstream” of primary psychological disorder. Abnormalities of muscle metabolism in ME/CFS patients have now been clearly recognised, providing scientific insight into the characteristic intolerance of exercise [8,9]. The ME/CFS dogma attributes this to psychological causes, particularly “exercise phobia”. It is now evident that calibrated exercise on a bicycle ergometer on two consecutive days indicates clear differences in muscle metabolism between ME/CFS patients and healthy but sedentary, i.e., deconditioned, controls. In the ME/CFS patients, the “anaerobic threshold” decreases on the second exercise day, whereas it increases in the controls as part of the process leading to increasing physical fitness [8,9].

In lay terms, the anaerobic threshold is the point at which muscles, exercising at maximum, switch to a metabolic pathway that does not use oxygen. This allows for a final burst of energy, followed within a few seconds by a sensation of exhaustion. High anaerobic thresholds are characteristic of athletes, particularly those undertaking endurance events that enable them to run long distances without hitting their anaerobic threshold. In non-athletic, but healthy people, repeated daily exercise causes the anaerobic threshold to rise, the result being increasing physical fitness. This does not happen in ME/CFS, and misguided attempts to force exercise on the patient has exactly the opposite effect for the reasons stated above. It is highly likely that such exercise on consecutive days will lower the anaerobic threshold even further. In badly affected patients, the effect of an extremely low anaerobic threshold is severe exercise intolerance, which manifests as profound exhaustion, even with the minimal effort of getting out of bed, or such activities as eating and swallowing. Such cases often arise as a consequence of enforced exercise, unwittingly and progressively lowering the anaerobic threshold, rendering a moderately affected and previously mobile patient even more exhausted. The result is a bedbound existence for prolonged periods, some even requiring tube-feeding because the level of exhaustion is such that chewing and swallowing a normal diet becomes physically impossible.

Studies in vitro of biopsied muscle from ME/CFS patients have shown metabolic defects that underpin the findings described above. Repeated electrical stimulation of isolated muscle fibres from ME/CFS patients reveals impairments of metabolism that are not seen in healthy controls [10]. Biopsied muscle is self-evidently separate from the owner’s psyche, safely excluding any influence from this source. There are other studies that further demonstrate the physical basis of ME/CFS. Disorder of the hypothalamic/pituitary/adrenal axis (HPAA) has been recognised for at least 30 years [11,12,13,14,15,16] and may well be due to autoimmunity [17]. Reduced circulating cortisol levels are the result, with a similar reduction of HPAA responses to stresses, both physical and psychological [14]. As a consequence of this, long-standing ME/CFS patients, due to impaired ACTH output, have been shown to have significantly smaller adrenals compared to normal controls [18], and also a low circulating blood volume [19]. The latter is very likely to contribute to Postural Orthostatic Tachycardia Syndrome (POTS), a common complication of ME/CFS [19].

Immunological dysfunction is also a universal feature. Many patients, previously healthy, experience an acute infection at the onset of their ME/CFS. This can either be viral, bacterial or protozoan. The common denominator is clearly an immunological stimulus, a principle supported by the recognition that vaccination can play the same role for some. In healthy people an immune response is stimulated by the infection/vaccine, the response then shutting down when the infection/vaccine is cleared. The shutdown is due to a series of progressive checks and balances that operate efficiently in normal health. In ME/CFS, this does not happen, and immunological activity continues for reasons that are yet to be fully understood. The simplest analogy is that of a revolving door continuing to revolve with the exit blocked. Chronic inflammation is the sequel [20,21], with some researchers describing the immune system as “derailed” [22]. The resulting inflammatory process includes the brain, giving pathological validity to the term myalgic encephalomyelitis [23,24].

In conclusion, proper scientific research into the physical cause(s) of ME/CFS will eventually replace the damaging influence of pseudoscientific, psychological dogma. A reliable biomarker currently in development [25] is a big step in this direction. Also, the current Covid19 pandemic may be a cloud with a silver lining. “LongCovid”, a devastating aftermath of Covid19 infection, is currently attracting research funding. The clinical presentations of “LongCovid” are strikingly similar to those of ME/CFS, and the underlying pathology may well be the same [26]. Hopefully, the funds referred to will be used for properly directed scientific searches for the precise cause of this pathology, rather than for a PACE mark 2. To paraphrase Albert Einstein: “the definition of insanity is to do the same thing again, expecting a different result”. If sanity prevails, properly focussed scientific research will eventually bring much needed relief to a population of patients who have hitherto been very poorly served by the medical profession.

Author Contributions

W.W. and N.S. have 60 years of combined experience with ME/CFS and this review is the product of that experience. W.W. was a consultant in infectious disease at the Royal Free Hospital London and N.S. a consultant paediatrician at the University Hospital of North Durham. All authors have read and agreed to the published version of the manuscript.

Funding

This review did not require funding support.

Institutional Review Board Statement

Not applicable.

Informed Consent Statement

Not applicable.

Acknowledgments

To the ME/CFS patient community for whom effective treatment is long overdue.

Conflicts of Interest

The authors declare no conflict of interest.

References

  1. Ghaemi, S.N. The rise and fall of the biopsychosocial model. BJP 2009195, 3–4. [Google Scholar] [CrossRef]
  2. Booth, G. Psychodynamics in Parkinsonism. Psychosom. Med. 194810, 1–14. [Google Scholar] [CrossRef]
  3. Marshall, B.J.; Warren, J.R. Unidentified curved bacilli in the stomach of patients with gastritis and peptic ulceration. Lancet 19841, 1311–1315. [Google Scholar] [CrossRef]
  4. McEvedy, C.P.; Beard, A.W. Royal Free Epidemic of 1955: A reconsideration. Br. Med. J. 19701, 7–11. [Google Scholar] [CrossRef] [PubMed]
  5. Sokal, A.; Bricmont, J. Fashionable Nonsense: Postmodern Intellectuals Abuse of Science; Picador: New York, NY, USA, 1998; p. 27. [Google Scholar]
  6. White, P.D.; Goldsmith, K.A.; Johnson, A.L.; Potts, L.; Walwyn, R.; DeCesare, J.C.; Baber, H.L.; Burgess, M.; Clark, L.V.; Cox, D.L.; et al. Comparison of adaptive pacing therapy, cognitive behavioural therapy, graded exercise therapy and specialist medical care for chronic fatigue syndrome (PACE): A randomised trial. Lancet 2011377, 823–836. [Google Scholar] [CrossRef]
  7. Tuller, D. Trial by Error. The Troubling Case of the PACE Chronic Fatigue Syndrome Study. Available online: www.virology.ws/2015/10/21/trial-by-error (accessed on 10 June 2021).
  8. Snell, C.R.; Stevens, S.R.; Davenport, T.E.; Van Ness, J.M. Discriminative value of metabolic and workload measurements for identifying people with chronic fatigue syndrome. Phys. Ther. 201393, 1484–1492. [Google Scholar] [CrossRef] [PubMed]
  9. Keller, B.A.; Pryor, J.L.; Giloteaux, L. Inability of ME/CFS patients to reproduce VO2 peak indicates functional impairment. J. Transl. Med. 201412, 104. [Google Scholar] [CrossRef]
  10. Brown, A.E.; Jones, D.E.; Walker, M.; Newton, J.L. Abnormalities of AMPK activation and glucose uptake in cultured skeletal muscle cells from individuals with Chronic Fatigue Syndrome. PLoS ONE201510, e0122982. [Google Scholar] [CrossRef] [PubMed]
  11. Demitrack, M.A.; Dale, J.K.; Straus, S.E.; Laue, L.; Listwak, S.J.; Kruesi, M.J.P.; Chrousos, G.P.; Gold, P.W. Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome. J. Clin. Endocrinol. Metab. 199173, 1224–1234. [Google Scholar] [CrossRef]
  12. Scott, L.V.; Medbak, S.; Dinan, T.G. Blunted adrenocorticotropin and cortisol responses to corticotropin-releasing hormone stimulation in chronic fatigue syndrome. Acta Psychiatr. Scand. 199897, 450–457. [Google Scholar] [CrossRef]
  13. De Becker, P.; De Meirleir, K.; Joos, E.; Campine, I.; Van Steenberge, E.; Smitz, J.; Velkeniers, B. Dehydroepiandrosterone (DHEA) response to i.v. ACTH in patients with chronic fatigue syndrome. Horm. Metab. Res. 199931, 18–21. [Google Scholar] [CrossRef]
  14. Gaab, J.; Hüster, D.; Peisen, R.; Engert, V.; Heitz, V.; Schad, T.; Schürmeyer, T.H.; Ehlert, U. Hypothalamic-pituitary-adrenal axis reactivity in chronic fatigue syndrome and health under psychological, physiological, and pharmacological stimulation. Psychosom. Med. 200264, 951–962. [Google Scholar] [CrossRef]
  15. Segal, T.Y.; Hindmarsh, P.C.; Viner, R.M. Disturbed adrenal function in adolescents with chronic fatigue syndrome. J. Pediatr. Endocrinol. Metab. 200518, 295–301. [Google Scholar] [CrossRef]
  16. Van Den Eede, F.; Moorkens, G.; Van Houdenhove, B.; Cosyns, P.; Claes, S.J. Hypothalamic-pituitary-adrenal axis function in chronic fatigue syndrome. Neuropsychobiology 200755, 112–120. [Google Scholar] [CrossRef]
  17. De Bellis, A.; Bellastella, G.; Pernice, V.; Cirillo, P.; Longo, M.; Maio, A.; Scappaticcio, L.; Maiorino, M.I.; Bellastella, A.; Esposito, K.; et al. Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome. J. Clin. Endocrinol. Metab. 2021, dgab429. [Google Scholar] [CrossRef] [PubMed]
  18. Scott, L.V.; Teh, J.; Reznek, R.; Martin, A.; Sohaib, A.; Dinan, T.G. Small adrenal glands in chronic fatigue syndrome: A preliminary computer tomography study. Psychoneuroendocrinology 199924, 759–768. [Google Scholar] [CrossRef]
  19. Van Campen, C.L.; Rowe, P.C.; Visser, F.C. Blood Volume Status in ME/CFS correlates with the Presence or Absence of Orthostatic Symptoms: Preliminary Results. Front. Pediatr. 20186, 352. [Google Scholar] [CrossRef] [PubMed]
  20. Montoya, J.G.; Holmes, T.H.; Anderson, J.N.; Maecker, H.T.; Rosenberg-Hasson, Y.; Valencia, I.J.; Chu, L.; Younger, J.W.; Tato, C.M.; Davis, M.M. Cytokine signature associated with disease severity in chronic fatigue syndrome patients. Proc. Natl. Acad. Sci. USA 2017114, E7150–E7158. [Google Scholar] [CrossRef]
  21. Hornig, M.; Montoya, J.G.; Klimas, N.G.; Levine, S.; Felsenstein, D.; Bateman, L.; Peterson, D.L.; Gottschalk, C.G.; Schultz, A.F.; Che, X.; et al. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Sci. Adv. 20151, e1400121. [Google Scholar] [CrossRef]
  22. Metselaar, P.I.; Mendoza-Maldonado, L.; Yim AY, F.L.; Abarkan, I.; Henneman, P.; Te Velde, A.A.; Schönhuth, A.; Bosch, J.A.; Kraneveld, A.D.; Lopez-Rincon, A. Recursive ensemble feature selection provides a robust mRNA expression signature for myalgic encephalomyelitis/chronic fatigue syndrome. Sci. Rep. 202111, 4541. [Google Scholar] [CrossRef]
  23. Glassford, J.A. The neuroinflammatory etiopathology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Front. Physiol. 20178, 88. [Google Scholar] [CrossRef] [PubMed]
  24. Tomas, C.; Newton, J. Metabolic abnormalities in chronic fatigue syndrome/myalgic encephalomyelitis: A mini-review. Biochem. Soc. Trans. 201846, 547–553. [Google Scholar] [CrossRef] [PubMed]
  25. Esfandyarpour, R.; Kashi, A.; Nemat-Gorgani, M.; Wilhelmy, J.; Davis, R.W. A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proc. Natl. Acad. Sci. USA 2019116, 10250–10257. [Google Scholar] [CrossRef]
  26. Komaroff, A.L.; Bateman, L. Will Covid19 lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Front. Med. 20207, 606824. [Google Scholar] [CrossRef] [PubMed]
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MEA Newsletter: Free Resources, NICE Guidelines, Covid-19 & Long Covid

Covid-19 & ME/CFS: Free Resources

During the unprecedented Covid-19/Coronavirus pandemic, we have ensured that people with ME/CFS – and those who continue to experience symptoms following infection – are kept informed of the latest guidance and related information.

All the leaflets and template letters relating to the Covid vaccination are free to download. We periodically review and update them when new information emerges or the situation regarding the national restrictions are changed.

Please note these leaflets are downloads. You can read them on-screen and save to your computer, phone or other device and can attach them to any email you might need to send. But you will need access to a printer if you wish them printed.

1. Letter Templates: Covid-19 & ME/CFS Vaccine Eligibility

We have produced these template letter to help you obtain (Group 6) access to the Covid vaccines. They contain all the relevant supporting information necessary to make your case for priority treatment. 

If you are unsuccessful after approaching your GP, you can use the second letter to approach your local clinical commissioning group (England) or health board (Wales). For information about Scotland:

CMO Scotland issues new guidance re: Group 6 Covid Vaccination Eligibility | 12 March 2021

VIEW INFO

MEA Letter to UK General Practitioners (GPs) (v5) – 19 March 2021

DOWNLOAD

MEA Letter to CCGs (England) & Health Boards (Wales) – 19 March 2021

DOWNLOAD

2. Letter Templates: Covid-19 & ME/CFS Clinical Vulnerability

Clinically Vulnerable Adults

This letter can be used if you need to assert your right to be considered a clinically vulnerable person with ME/CFS during the Covid-19 restrictions. It has been updated with useful links to the latest information.DOWNLOAD

Clinically Vulnerable Students

This letter is for students and can be used if you need to assert your right to be considered a clinically vulnerable person with ME/CFS during the Covid-19 restrictions. It has been updated with useful links to the latest information.DOWNLOAD

3. Covid-19 & ME/CFS Guidance

  • Covid-19 & ME/CFS Reducing the Risk of Infection – November 2020. People with ME/CFS are already in a vulnerable/high risk group when it comes to catching COVID-19 – mainly because it is highly likely to cause an exacerbation of existing symptoms, or a more persisting relapse. It’s important for everyone with ME/CFS to do all they can to reduce the risk of catching this infection. This means adopting a way of living that is based on individual circumstances and individual risk factors. .DOWNLOAD
  • Covid-19 & ME/CFS Vaccine Update May 2021. Monday 4th January marked the start of the UK mass vaccination programme against COVID-19. In this free leaflet we discuss: Covid-19 vaccination priority and ME/CFS, The safety of the Covid vaccines in general, The safety of the Covid vaccines for people with ME/CFS, Vaccine administration practicalities, Making a decision whether to have the vaccine. DOWNLOAD
  • Long Covid & ME/CFS: Information & Management May 2021In April and November 2020, we provided information and guidance to the management of post-covid fatigue, post-Covid fatigue syndromes and the overlap between ME/CFS and Long Covid.This was based on how our knowledge and expertise about post-viral fatigue, post-viral fatigue syndromes and ME/CFS could be transferable to people who were not recovering from COVID-19, and where the symptoms were the same or very similar to ME/CFS.It has now been fully updated in this 40-page booklet to take account of developments in our understanding of the presentations and management of post-COVID-19 and how best to name the various clinical presentations. DOWNLOAD

The ME Association Telephone Helpline: ME Connect

Here to listen. Here to help.

We deal with each person individually, in a sensitive and professional manner. Every communication is kept completely confidential. ME Connect is staffed by a fully trained and supervised team of volunteers – most of whom have personal experience of M.E.

“It is really good that you offer this service, it is such a relief to speak to someone who understands.”

CALL ME CONNECT 
0344 576 5326
365 days a year 
10am-12noon, 2pm-4pm, 7pm-9pm

“The role of ME Connect is simple. It is there to support people with ME and their carers to make informed choices. It is there to listen to a caller and try to understand all the issues they are facing. Each year it does this for thousands of people.

“Of all that The ME Association does for people with ME it is our Telephone Helpline of which I am proudest. It is what a charity is all about; giving help to those who need it at a difficult time in their lives…”

Neil Riley, Chairman, ME Association

“Thank you so much for giving up your time to work on this Helpline. It is just so nice to speak to someone who really understands what I am going through.”

New NICE Guideline for ME/CFS

We are counting down to the final publication of the new NICE Clinical Guideline for ME/CFS in August. It is an important document and will provide a framework for all health and social care in England (and is recognised in Wales, Scotland, and Northern Ireland).

The new guideline has the potential to improve the relationship between people with the condition and healthcare professionals, and could lead to more timely and accurate diagnoses and more appropriate and tailored energy management, for example.

The draft guideline is not perfect, but we believe it is a positive development and we remain cautiously optimistic that the changes it could bring will be of benefit to people to anyone who will need it.

The independent guideline committee which includes expert clinicians like Dr Charles Shepherd (Hon. Medical Adviser to the ME Association) and people with ME/CFS have been working together to produce the draft and final recommendations to NICE.

NICE then determine the content of the final guideline. The committee were tasked with reviewing all stakeholder feedback on the draft – including over 170 comments from the ME Association – in the early part of this year with the result that NICE decided to push final publication back until 18 August.

Some in the community are concerned that this delay could mean a dilution of the generally positive draft and are worried that graded exercise therapyor exercise recommendations might creep back into the final version.

While nobody will know for sure what NICE will ultimately decide, we have chosen to remain positive.

We think it would be very difficult for NICE to change their minds when the independent committee has reviewed all the relevant research evidence and made their recommendations, and when NICE chose to make the removal of GET a key part of their press release last November:NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS | 10 November 2020
Covid Pandemic

We are hopefully coming to the end of lockdown restrictions and most people will now have had or at least be eligible for vaccinations if they choose to have them. But Covid-19 will remain with us for the foreseeable future and it seems likely that we will be offered annual boosters alongside the annual flu vaccination.

Many of you kindly responded to our request for Covid vaccine experiences. We heard from a large number of people who had no reaction, people who had a short-term reaction, and from those who were significantly affected over the medium term. We’ll continue to feature these stories on the website and social media.

We have made information about Covid-19 & ME/CFS as well as Long Covid freely available since the pandemic began, and we continue to keep it updated. This includes a new 40-page booklet on Long Covid Management.

We helped a great many people obtain priority vaccination in Group 6 – although this campaign proved to be both effective and frustrating as some doctors were unwilling to accept their patient’s vulnerability or use their own clinical judgment, but also because the JCVI would not include ME/CFS as an example of a neurological condition in their published guidance.ME Association Free Information: Covid-19 & ME/CFS & Long Covid

Long Covid

We continue to welcome people with Long Covid because we believe they can benefit from the experience we have in regard to symptom and illness management.

There are differences between some with Long Covid and ME/CFS but there are strong similarities as well. Long Covid is increasingly being viewed as another example of a post-viral fatigue syndrome, and viral infections have long been seen as the biggest trigger for ME/CFS.

Long Covid continues to grab headlines with more research funding being announced almost weekly, and, in England at least, the establishment of a Long Covid clinical network that now includes both adults and young people.

Existing NHS ME/CFS specialist services have, in some instances, opened their doors to Long Covid patients to help the estimated 2 million people who might now be seeking care and support.

We hope that people with ME/CFS will benefit from biomedical research into Long Covid, and we continue to push for ME/CFS patients to be included so we might better determine similarities, differences, common causal mechanisms, and, we hope, effective treatments.

2 small favours to lighten my load?

 

I’m really grateful to Members who pay with Friends and Family as it saves Vegepa Club several pounds in PayPal fees which means more for the ME Research Fund.

 

Of course I realise that you have to trust me to pay by this method so I’m grateful for that too!

 

 

Now I’m going to be really cheeky (!) and ask you, if you possibly can, to order a larger quantity in future, and therefore less frequently, because it will lessen my work load considerably!  

 

I’m finding it harder and harder these days to keep up with all the work entailed in running Vegepa Club single handed.

 

The thing is that it takes the same amount of time for me to process a minimum order of 4 boxes as a larger one of 40: the same time to wrap the parcel, the same packaging costs, the same drive to the post office and back – plus Royal Mail postage will cost you the same for 4 boxes as it does for a parcel of 20.

 

More importantly, I have to do this work more frequently!

 

Please don’t be offended and if you can’t manage it for whatever reason, don’t worry at all, I really, really do understand.

 

Take good care of yourself until next time, 

 

 

Tell us: do you have multiple chronic pain conditions?

Have you been diagnosed with long Covid, endometriosis, fibromyalgia, migraine, ME/CFS or another chronic pain condition? We’d like to hear from you

Wed 26 May 2021 06.07 BST

Guardian community team

As part of a project on long Covid and other chronic conditions, we would like to hear from individuals about their experience seeking treatment for them. What overlapping conditions do you have? If you’ve been diagnosed with long Covid, did you have any pre-existing chronic pain conditions? Does your healthcare practitioner treat one or all conditions?

Share your experiences

You can get in touch by filling in the form below, anonymously if you wish. Your responses are secure as the form is encrypted and only the Guardian has access to your contributions.

One of our journalists will be in contact before we publish, so please do leave contact details.

https://guardiannewsandmedia.formstack.com/forms/chronic_pain_conditions

© 2021 Guardian News & Media Limited or its affiliated companies. All rights reserved. (modern)

Breakthrough magazine

ME Research UK publishes its own magazine, Breakthrough, featuring updates on projects funded by the charity, recent research from around the world, information about our supporters’ fundraising activities, and other articles on ME/CFS issues.

Read or download the latest issue of Breakthrough below, and click here to read Terms and Conditions relating to the magazine. To subscribe to future print issues free of charge, please sign up for updates.

Spring 2021

The most recent issue includes articles on potential biomarkers based on viral infections, a review of large ME/CFS studies, research bites, and much more.

All the way to Australia!

I thought I’d add a moment of cheer to the website and share a bit of happiness from one of our many delighted Members.

L’s been ‘stuck’ in Australia since she went on a family visit there at the beginning of the Pandemic.

It’s still somehow childishly exciting for me to see a Vegepa Club parcel and my address label actually on the other side of the world!

“Hi Lynne
Just letting you know that my VegEPA parcel arrived today!

I ordered on 4th May & the parcel arrived on 20th. Sixteen days from UK order to Australia is pretty good going in normal times, let alone a pandemic!

Many thanks for posting this so efficiently for me. I’m very grateful. Good on ya! (Although not sure if I’ve actually heard any Australians say that)!


Stay safe & well while things hopefully, settle a little.
Kind regards

L 🤗”

Recycle your empty blister packets!

For the first time, Vegepa blister packets can now be recycled at participating pharmacy drop-off points nationwide. The ‘Little Packs, Big Impact’ recycling initiative, allows you to recycle any empty prescription and over-the-counter medicine blister packets, simply and freely, by dropping them in dedicated bins the next time they need to visit their local participating Superdrug or independent pharmacy.

TerraCycle will then convert the packaging into reusable raw materials using its unique recycling process – preventing empty packs spending a lifetime in landfill.

What’s more, people can also support fundraising for local schools, charities and non‐profits for every empty blister packet that gets recycled as part of the ‘Little Packs, Big Impact’ scheme.

Joining the ‘Little Packs, Big Impact’ recycling movement is easy. You can find the location of your nearest drop-off point at www.terracycle.com/en-GB/brigades/medicine-packet-uk (or find out how to ask your local pharmacy to join the programme).

Research by partners Buscopan and Dulcolax carried out with over 2,000 UK adults, as part of the ‘Little Packs, Big Impact’ campaign, revealed nearly half of us (49%) use medicines packaged in blister packs on a daily basis.

Despite such wide use, 77% of people appear seemingly baffled as they don’t know what part of a blister pack can be recycled, as nearly a third (29%) incorrectly put them in household recycling bins, even though these aren’t accepted by most local councils. Many are also unaware of the wider environmental impact, as one in five (20%) admit not knowing what happens to blister packs thrown into rubbish bins or where they end up.

Silvina Vilas, UK marketing director at Sanofi Consumer Healthcare, maker of Buscopan and Dulcolax, says: “As a nation, we rely on medicines to manage self-treatable and long-term conditions, yet these little packs have a big impact on the environment.  Until now, there hasn’t been an accessible solution for recycling medicine blister packaging.

We believe in a healthy gut and a healthy planet, so are starting a movement to make it easier for people to recycle blister pack waste. We want to encourage pharmacies and the public to get involved with this recycling initiative, so we can let these little blister packs live again as reusable products like outdoor furniture.”

Laure Cucuron, general manager for TerraCycle Europe, adds: “Blister packs are made of a complex mix of difficult-to-recycle materials required to protect medicines, including plastic and aluminium foil, which are not accepted by council recycling systems so end up in household waste.

Now people can play their part to help the environment with a small change – by dropping empty blister packs at participating Superdrug and independent pharmacies through this scheme, their blister packs can now be recycled for the first time.

Vegepa Club comes up winning again for biomedical research into ME/CFS

February 8, 2021

by Tony Britton, Fundraising and PR Manager, ME Association

I don’t remember which year it was exactly but the first and only time I ever met Lynne Kersh was at one of the early Invest in ME international research conferences in Westminster – dynamic speaker events which have always been the stuff of legend in the M.E. community.

Somebody like Dr Dan Peterson, from Incline Village, Nevada, had just come off stage after talking about his cohort of M.E. survivors. The lights went up in the wood-panelled lecture theatre and there she was – another person out to stretch her legs.

Until then, we’d kept in touch at a distance about this and that. But this was late afternoon, we both needed air and a break from concentrated science. Standing opposite each other, we chatted for just 30 seconds. It must have meant something because we’re still talking today.

Lynne Kersh

I went away to my work at the ME Association. Lynne went on to prove her credentials in the tough old world of commerce by founding what’s now known as The Vegepa Club – people who get unique deals on a range of supplements formulated by Professor Basant Puri, from Hammersmith Hospital. 

Lynne told me about the really tough negotiations she had with the product manufacturer in Cambridge and how she came through those with flying colours. 

How she chanced her bank balance with her first major investment in stock. Then dozens of boxes arriving from the manufacturer to be stored up the stairs and on every spare inch of hallway at her home in Hertfordshire. 

Over the years, Lynne and the club members have always donated part of each sale to biomedical research into ME. It’s been one of their USPs. And for some years now, our dedicated Ramsay Research Fund has been the sole beneficiary of this generosity. 

This year, as you can see from the images, club members have donated a magnificent £814.24. Over time, this has amounted to £62,000 being donated to a very worthwhile cause.

Thank you, Lynne. You continue to do us proud. Very proud indeed.

I’m told Vegepa and its range of allied products do wonders for the foggy brains of people with M.E. but I can’t vouch for that. The ME Association never recommends products or services. If you visit the website at https://www.vegepaclub.com you will have to check them out for yourselves and make up your own mind.

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, campaign, and invest in biomedical research, then please donate today.

Just click the image to the left or click here for one-off donations or to establish a regular payment. 

You can even establish your own fundraising event on JustGiving.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!


ME Association Registered Charity Number 801279

Covid Vaccination advice

It is a matter of choice.  Any of the three vaccines currently available in the UK will likely cause relapse in ME/CFS, because the mechanism of action of any vaccine always involves stimulation of the immune system, which is why vaccines are generally not advised in this illness. There is therefore a recognisable risk to being vaccinated.

On the other hand, a bout of Covid infection will also cause relapse, possibly more serious than the equivalent relapse from a vaccine. The alternative approach would be to avoid vaccination altogether and continue self- isolating. Anyone visiting or caring for you should also be vaccinated beforehand, constituting a cordon sanitaire.

I am also hoping that, by the middle of this year the campaign of vaccination will have created enough herd immunity such that transmission eventually ceases. Thus two options: I am marginally in favour of the second one, provided the self isolation is effective and all visitors/fellow residents have been vaccinated. Please note that this advice is given on the assumption that you have no other chronic medical conditions, necessitating a different approach.

A final point: Vitamin D is highly protective against Covid19 infection in that it prevents the more serious manifestations of the disease. Anyone suitably topped up with Vitamin D is much more likely to suffer a mild, self limiting illness. The dose I recommend for adults is 2000 units colecalciferol daily. As above, this advice assumes that you have no other chronic medical conditions for which Vitamin D intake may have to be adjusted accordingly. In such cases, I suggest you speak to your GP.

Best Wishes,

Dr William R C Weir FRCP, FRCP (Edin)

Consultant Physician

No More Mr NICE Guy…

Written by  Brian Hughes on November 21, 2020

The newly released draft NICE guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” continue to cause a stir

And rightly so. The new guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — and, for good measure, to cast clouds over significant swathes of psychology too.

Some of the content of the NICE documents is simply breathtaking. Here is an extract from expert testimonyprovided by Jonathan Edwards, professor emeritus of clinical medicine at University College London:

“Reviewing clinical trials in CFS/ME came as something of a shock to me in terms of methodologies considered acceptable…. What surprised me about PACE and other trials in ME/CFS was not so much that therapists were still using unproven treatments but that anyone should think it worth doing expensive formal trials with inadequate methodology.”

and

“Recent comments by three PACE authors in a published response to critique indicate how little the difficulties of expectation bias are understood.  The authors say that they prefer the altered outcome criteria that they introduced post-hoc because they gave results more consistent with previous studies and their clinical experience. 

They do not seem to realise that outcome measures need to be predefined in order to avoid exactly this sort of interference from expectation bias.”

In other words, they couldn’t see the problem with having marked their own homework.

In essence, this professor of clinical medicine was schooling the psychs on behavioural science. He displayed a better appreciation of psychology than many supposedly esteemed psychologists.

And he was absolutely correct

Bad methods have been the bane of the psychological sciences for decades. Psychology’s so-called “replication crisis” is simply a manifestation of a deep-seated problem with standards.

Psychologists, collectively, have too long been tolerant of methodological amateurishness. Some of them actually seem to like it.

The key shift in NICE’s approach to ME rests on their new — and improved — attitude to evidence quality. 

As Jonathan Edwards argues, in drug trials, poor quality evidence is automatically discarded, because it is recognised as having no value. Bad evidence is seen as equivalent to no evidence at all.

However, when it comes to treatments for ME, the psychologically-oriented professions have seemed entirely happy to rely heavily on bad evidence, on the basis that it is the only evidence they have.

But it seems NICE is no longer in the mood for looking on the bright side of mediocrity. For them it is a matter of No more Mr NICE Guy, as it were.

In psychology, the look-on-the-bright-side approach to deficient evidence is customarily encouraged — on the grounds, among other things, of collegiality and tone

For a discipline that puts such store in critical thinking, it sometimes feels that psychology, at a corporate level, holds dissent in deep disdain. Many supposedly Very Important Psychologists have punched down harshly whenever critics have had the temerity to call them out on their bad research. Famously, one Ivy League professor bemoaned the “shameless little bullies” who publicly criticised his studies. Another notoriously denounced such academic whistle-blowing on the grounds that it constituted “methodological terrorism.” 

This domineering posture has long been employed by the coterie of establishment figures who have promoted the psychological treatment of ME, particularly in the UK. The new stance from NICE suggests that their influence is now waning. Argument from authority no longer holds sway.

On their website, NICE present a full set of supporting documents that informed their new draft guidelines. Tucked away in a file entitled Evidence review G is a no-holds-barred evaluation of the research on “non-pharmacological” (i.e., psychology-based) ME treatments. It’s really quite something.

Table 8, for example, lists details of no fewer than 42 separate outcomes from studies that compare cognitive behavioural therapy (CBT) to usual care, heretofore held up as evidence of its efficacy as a treatment for ME and related diagnoses. A large number of these studies were conducted by investigators on the PACE Trial and their wider network of professional contacts and peers. 

The NICE reviewers meticulously assessed every single study for methodological rigour. Considering how doggedly CBT has been defended by its advocates — supposed experts in psychological therapies, remember — the results of the evaluation are, quite simply, humiliating. 

Of the 42 outcomes, 37 were graded as yielding “VERY LOW” quality evidence. The remaining five — apparently the cream of this crop — were graded as “LOW” quality. No study was deemed to be of a quality that was even passable, never mind actually “good”. 

But that was just one table. There were more. Many more. A total of nineteen tables, in fact, in which NICE proceeded to pick through the details of a very sorry research literature. Overall, across no fewer than 172 CBT outcomes derived from the various studies, NICE graded the evidence for 153 (89%) as “VERY LOW” quality and for the remaining 19 (11%) as “LOW” on qualityNot a single study was found to have yielded evidence that exceeded that abysmal threshold. 

A similar bloodbath befell studies of graded exercise therapy (GET). Of a total of 64 outcomes in studies of GET, NICE graded 52 (81%) as “VERY LOW” quality and 12 (19%) as “LOW” quality. Again, not a single study produced evidence any better than “LOW” quality. 

The most common methodological problem identified in all these studies was “risk of bias.” We all know the reasons for this — dodgy control groups, absurd blinding, shameless goalpost-shifting, and the entire unseemly smorgasbord of PACE-style strategies that many of us have been endeavouring to highlight for years

And yet, despite the fact that we all know about these shortcomings, it is still quite shocking to see them tabulated so extensively and so starkly by NICE. 

At last, it seems, someone in authority is actually getting it.

Cartels, by their nature, rarely go down without a fight. In the old days, academics might seek to defend their position with arguments. In the twenty-first century, it’s all about denial and spin. Here are some soundbites from the various CBT and GET advocates exposed by NICE as producers of predominantly “VERY LOW” quality research, as relayed by their go-to public relations firm, the so-called Science Media Centre (emphases added by me):

“Cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are evidence-based treatments for chronic fatigue syndrome (CFS) in that they facilitate reductions in fatigue and improve people’s quality of life if delivered by a qualified therapist.”

“I am aware that there has been controversy over these approaches but there has never been any evidence of harm and they remain the only evidence based treatment approach in CFS.”

“13 years ago there were only two treatments with clinical trial support, namely graded exercise therapy (GET) or cognitive behavioural therapy (CBT), and that has not changed over the years.”

“It is therefore a great surprise that this guideline proscribes or qualifies treatments for CFS/ME for which there is the best evidence of efficacy, namely graded exercise therapy (GET) and cognitive behaviour therapy.”

In every single case, each of these so-called experts describes CBT and GET as “evidence-based” despite the fact that NICE has exposed the purported evidence to be of such low quality as to be meaningless. The “evidence” they refer to is not evidence at all.

Either they haven’t actually read the NICE evaluation, or they just don’t care. But then people like this don’t have to defer to documents. They know everything already. They’re experts.

Such weapons-grade denialism is a key part of the problem. Black is whiteUp is downWe are right, no matter what anyone says

You know an entire field is in trouble when its key authority figures get so publicly drunk on their own self-reinforcing privilege.

As a psychologist, I always get uncomfortable when psychology talks about its “replication crisis”. And I say this as someone who wrote an entire book called Psychology in Crisis

Replication isn’t really the difficulty. Rather, it’s the people who are blind to the replication issue who create the actual mess. The problem isn’t bad methods. It’s the culture of denialism that surrounds those methods and which freely perpetuates their use.

NICE’s verdict on psychosocial treatments for ME amounts to nothing less than an utter repudiation. That it comes from an authoritative agency and is based on a thorough empirical review is extremely significant.

This is not just a turning point for people with ME, CFS, and related conditions — it is a high-profile exposure of exactly how, for years, entire subfields of the psychological sciences have been willing to overlook, if not embrace, shoddy standards.

In all respects, this public shaming is long overdue. It is richly deserved. 

https://thesciencebit.net/2020/11/21/no-more-mr-nice-guy/?fbclid=IwAR158wqjm93QLlruiOP4rJVUNEu81bFIe5sY5_m1aJ4WNvZUxa5VynQpY-I

THE SCIENCE BIT

Ramblings, Offcuts, Purgations, Whims

Post/Long Covid syndrome and ME

Proposed Research into Post Covid Syndrome and ME/CFS Under the Auspices of The London School of Hygiene and Tropical Medicine.

Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:

Introduction:

“Long Covid” is beginning to look very much like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Dr Anthony Fauci, Director of the United States’ National Institute of Allergy and Infectious Disease Institute certainly thinks so, as does Professor Anthony Komaroff of the Harvard University Medical School. Professor Komaroff has much experience in the field of ME/CFS and has published widely on the subject. The symptoms described by sufferers are similar to the point of being identical, and the majority of patients with ME/CFS prior to the Covid-19 pandemic also describe an onset triggered by an infection. The only difference is that most people with pre-Covid-19 ME/CFS present in a sporadic, non-epidemic fashion, following an endemic, community acquired infection. They therefore have not presented in such concentrated numbers as is the case with Long Covid. 

The consequence has been less publicity, and crucially, very little understanding within the medical profession of its true nature. As previously stated, pre-Covid-19 ME/CFS is usually triggered by an infection, and a range of very disparate infections have been recognised as triggers. These range from Epstein-Barr virus through to Salmonella infections and giardiasis. Thus ME/CFS can be triggered by a mixed bag of viruses, bacteria, or protozoa, indicating that the initiating impetus for ME/CFS is a non-specific immunological challenge. This principle suggests that Covid-19 can be added to the range of infections that can trigger ME/CFS.

The scientific question which has always been difficult to answer is: what happens during the acute phase of a triggering infection which then leads to the development of ME/CFS? Also, how do those who don’t progress to ME/CFS and recover, differ from the unfortunates who do? One of the recognised immunological abnormalities in ME/CFS is inappropriate and ongoing immunological activity. This is at variance with the normal, healthy immune response to an acute infection. In the latter case, the immune system responds to the presence of an infecting organism, acts appropriately to clear it and then shuts down afterwards with resolution of the symptoms of the infection. In ME/CFS this does not happen, and immunological activity continues inappropriately despite the fact that the triggering organism is no longer present. The simplest analogy is that of an old fashioned gramophone needle getting stuck and replaying repeatedly in the same groove. Therefore: what causes the needle to get stuck?

Outline of Proposal:

The Covid-19 pandemic now presents the opportunity to look at blood samples from people with Long Covid, preferably taken as early as possible in their illness. The intention will be to look for any factors which may have contributed to its development. Ideas for this range from low Vitamin D levels, to concurrent but “silent” virus infections, which are quite common. A longer shot will take in the possibility of what are known as endogenous retroviruses being released from the patient’s genome by the metabolic stress of the triggering infection. It is proposed that these may then reinsert at a different part of the genome, with pathological results.

The study will be carried out through the ME Biobank at  the London School of Hygiene and Tropical Medicine. Blood samples will be required from patients with Long Covid, preferably as early as possible, and not more than 4 months after the onset of the infection. Samples already taken and stored during the acute stage of the infection (usually in hospitalised cases) will be invaluable. Initially the blood samples would have to be taken from patients ambulant enough to get to central London. Nonetheless dependant on funding of the study, a more comprehensive operation may allow for housebound post Covid patients being visited at home for their blood to be taken. An additional and important component of the study would comprise blood from a friend or relative who also experienced Covid-19 infection but who made a complete recovery. The intention being that their blood would act as a “control”, providing comparison with blood from someone with Long Covid.

It should be emphasised that this study is at the very earliest stages of preparation. In particular much will depend upon the amount of funding which can be raised. We are especially seeking independent funding from the ME community; this may make the difference between a useful but small pilot, to something larger and more ground-breaking. For those with Long Covid who are interested in being involved in  this study the following link provides information on registration:

William Weir  FRCP, FRCP (Edin)
Consultant in Infectious Disease

Distance Aware Badges

Distance Aware badge scheme will ‘help people help each other’

The Distance Aware shield badge is a scheme James O’Brien said would “help people help each other”, but what is the shield badge?

The Distance Aware scheme is a national initiative to enable individuals and organisations to politely prompt ongoing distancing and respect of individual social space.

Helen Iliff the project lead for the scheme told LBC the badge scheme was designed to help the group of people with who have underlying health conditions.

She said, “there is a sense that the general population is getting tired of remembering to social distance all the time.”

The scheme is working in conjunction with many charities and organisations
The scheme is working in conjunction with many charities and organisations. Picture: #DistanceAware

But she warned that comes at the same time “lots of people who are particularly vulnerable are starting to step back out and do a bit more in society.”

James asked Helen if the badge was “an aide for the other people, to help us help them.:”

Helen said it would “help us all help each other,” which James said was a lovely way to put it.

The badge comes in five different colours in a shield shape with a double-ended arrow on it.

Helen told LBC there were “five colours wholly to make sure the scheme is fully inclusive” for people.

She revealed the Distance Aware team had worked with the Royal National Institute for the Blind to ensure the badges were “colour pallets available for visual impairments.”

James said he loved the idea, and if he sees anyone wearing a badge with a shield and a double-ended arrow he would endeavour to be “even more careful and even more conscientious.”

Helen said she hoped the badge would work as a “polite prompt to others” to help “reinforce that message with a bit of societal responsibility.”

The scheme has received an endorsement from the English and Welsh governments and also several retailers have back it too.

You can find out more details here.

INTERESTING…..


JOIN US FOR A LIVE WEBINAR WITH

Dr. Sarah Myhill MB BS, a pioneering GP
with over 35 years in clinical practice.


Tuesday 09 May 2020


17:00–18:00 BST

May 12th 2020
Awareness Day Special
 

May is a month of International Awareness for many illnesses and conditions that we know to be so often linked—ME, Fibromyalgia, Lyme Disease, EDS, PANS/PANDAS, Autism, Gulf War Syndrome, MCS, MCAS—and in 1992 Thomas Hennessy Jr. founded May 12th as the International Awareness Day for Chronic Immunological and Neurological Diseases. 

For Awareness Day 2020 we are delighted to have Dr. Sarah Myhill speaking about these disorders against the backdrop of COVID-19.
Dr. Myhill will cover interconnections that she
has found so far between some of these conditions, including whether those with ME/Lyme/Fibromyalgia are more susceptible to the disease, and supportive therapies to strengthen patients during this critical period.
 
REGISTER NOW


ABOUT THE SPEAKER

Dr. Sarah Myhill MB BS
 qualified in Medicine (with honours) from the Middlesex Hospital Medical School in 1981 and has since focused tirelessly on identifying and treating the underlying causes of health problems, especially the ‘diseases of civilisation’ with which we are beset in the West. She has worked in the NHS and private practice and for 17 years was the Honorary Secretary of the British Society for Ecological Medicine, which focuses on the causes of disease and treating through diet, vitamins and minerals and through avoiding toxic stress.

She is also a founder member of OPUS (organophosphate users support group) – a charity to help sufferers of pesticide poisoning.

Visit her website at www.drmyhill.co.uk

CORONAVIRUS & ME/CFS

As on Monday 6th April 2020

By Dr. Charles Shepherd, Hon. Medical Adviser For ME Association.

The main MEA summary of Cv19 contains comprehensive information on all aspects of the infection as it applies to ME/CFS.  Individual sections cover the following topics:

A. What is the coronavirus? What tests are available? Is there any treatment? When will we have a vaccine?

B. What are the symptoms?

C. What should you do if you have a new onset of cold or flu like symptoms?

D. Who is most at risk of catching this infection?

E. How can you prevent yourself from getting infected? Respiratory and hand hygiene. Can pets transmit the infection?

F. What contact can you still have with other people? Social mobility, distancing and isolation

G. What help is there for carers?

H. Education and Employment

I. Shopping, food and medicine delivery

J. Foreign Travel

K. Hospital and other medical appointments

L. MEA statement on neurological classification of ME/CFS and whether people with ME/CFS should be classified as being vulnerable in relation to coronavirus

M. Is ME/CFS included in the government’s ‘extremely vulnerable’ group?

N. Further information

Click HERE for link to main MEA summary

We will continue to keep you up to date on any new developments via MEA social media and answer any questions, where we can, on MEA Facebook.

Please look after yourself and stay safe. ME Connect – the MEA telephone helpline – is open morning, afternoon and evening every day of the week if you want to speak to someone for information or support.  Click HERE for their contact details.

  1. Controlling the spread of the virus

The number of new cases being reported here in the UK has continued to rise quite steeply but there are some signs in the past few days that it could be slowing down.

  • As of Monday 6th April 2020, a total of 51,608 people have tested positive for the virus
  • As of Monday 6th April 2020, 5373 patients in the UK who tested positive for coronavirus (COVID-19) have died.
  • Source: UK Government.

The situation continues to remain very serious in Italy, Germany and Spain – although there are signs that the daily increase in numbers in these countries may have reached a peak and could be starting to fall. Several parts of the USA – New York in particular – are also experiencing a very serious increase in numbers.

  • Everyone must stay at home to help stop the spread of coronavirus.
  • You should only leave the house for 1 of 4 reasons:
  • shopping for basic necessities, for example food and medicine, which must be as infrequent as possible
  • one form of exercise a day, for example a run, walk, or cycle – alone or with members of your household
  • any medical need, or to provide care or to help a vulnerable person
  • travelling to and from work, but only where this absolutely cannot be done from home
  • These 4 reasons are exceptions – even when doing these activities, you should be minimising time spent outside of the home and ensuring you are at least six feet (2 metres) apart from anyone outside of your household.
  • Source: NHS Choices.

Although stricter measures relating to social distancing have been brought in, action still needs to take place to deal with crowded public transport – especially on certain parts of the London tube network – and with employers who are not taking measures that will help to ensure their employees are not working closer than six feet (two metres) apart and are receiving appropriate protective equipment.

It’s still too early to know whether the new social distancing measures are being really effective but there are some very early signs that they could be. We should have a much better indication next week. The hope is that the number of new UK cases will then start to reach a plateau, possibly by the middle to end of April, and then start to slowly decline.

New research from America suggests that to be perfectly safe the space between people should be more than six feet (two metres). So, on a personal basis, I am now trying to increase my distance when outside the house to nearer twelve feet (four metres) wherever possible.

News item:

Academic paper in Journal of American Medical Association:

  1. Hand and Respiratory Hygiene

Two key points on reducing the risk of catching the virus remain exactly the same:

1  Avoid touching any surface that other people have been touching. Always wash your hands, fingers and wrists in soap and hot water for at least 20 seconds after touching any surfaces that could have the virus on them.  Soap and water is more effective than sanitisers.  This is because the virus is protected by a thin outer layer of fat and soap causes the fat layer to disintegrate and the virus then decays.

2  Do not touch your face, eyes or mouth with your fingers – especially when you have been touching surfaces that could be infected.

In addition to the very detailed guidance on hand and respiratory hygiene in section E of our main website summary,  here are two more tips on this vital aspect of preventing you catching Cv19:

Careful hand washing is, not surprisingly, leading to some people having dry cracked skin – which is another risk factor as the virus can hide in small skin cracks.  Use a good hand moisturizer after washing and drying hands to keep the skin hydrated.

As we explain in the main website summary, the virus can remain active on many different types of surface.  If you are still going supermarket shopping, one item that large numbers of people are handling are the trolley handles.  So it’s worth using an alcohol-based sanitizer to wipe the handle down before use.

    3.  Testing for the virus

Following a very unsatisfactory initial approach to getting testing done, it does now appear that testing for evidence of both past infection (the antibody test) and current viral infection (the antigen test) is going to be rapidly increased to a government aim of 100,000 tests per day by the end of April.  

This should mean that health and other key workers will know if they have, or have had, the virus.  They will also know when they are not infective and can go back to work.  However, problems do still remain in finding an antibody test that is sufficiently reliable and is not producing false positive results.

Testing for people who have symptoms, and are being managed at home, is not the main priority right now. But I hope that this will soon be the case. 

  1. What to do if you have symptoms suggestive of coronavirus infection 

The advice here remains the same in that people with symptoms, or suspected symptoms, should contact NHS 111 for further advice:

If symptoms become more severe, especially any sort of difficulty with breathing, speak to NHS 111 or your GP. 

Do not go to your GP surgery or local hospital. Your GP can speak to you on the phone.

If symptoms worsen, especially if you become short of breath, have rapid breathing, or are drowsy, you must get in contact again with either your GP or NHS 111 – as hospital admission may then be necessary.

New emergency hospitals are being prepared for serious cases all around the UK – including sites in Bristol, Harrogate, Glasgow and the use of the Excel Centre in London, where the first NHS Nightingale Hospital opened last week.

Finally, there are further reports to indicate that loss or taste of smell is an occasional symptoms of Cv19 and can be one of the initial signs of infection. And some people are, not surprisingly, losing several kgs of weight during the course of the active infection stage.

  1. MEA working arrangements

We issued a statement last week to provide information on all aspects of our work and the services we provide. Almost all of our key activities are continuing as normal – the main change being that we have now closed our office in Buckingham. Office staff are now working from home.

The main impact here is that we will not be able to send out any paper literature, purple books, or merchandise from the office for the foreseeable future. ME Connect – the MEA telephone helpline – remains operational, seven days a week, for information and support.

ME Association statement:

  1. Employment

We are receiving an increasing number of queries relating to employment issues.  As a result, we have produced a separate guide to employment, coronavirus and ME/CFS.  

This can be accessed here:

  1. Shopping – food and medicines

Concerns about the delivery of food and medicine to people who are confined to their homes – the vulnerable and extremely vulnerable – have been repeatedly raised during this past week.  

The ME Association, along with our charity colleagues in Forward ME, have sent a letter to the Government and the main supermarkets, to express our deep concerns and requesting urgent action to help those most in need.

Some people are now able to access home delivery slots or click and collect slots via supermarkets online especially if you let the supermarket know you are vulnerable, or extremely vulnerable, or are a regular user of the service and pay monthly for a delivery option.

Most supermarkets are now opening specifically for vulnerable people, and those that care or support them, during special times each week. Check supermarket websites for more information.  If you need someone to shop for you, these might offer a good option.

So, there are signs that things might be improving.  However, for most people, home delivery and supermarket access remain a concern.

It’s worth noting that there are now a huge number of community volunteer groups being set up all around the country who can provide volunteers to do shopping, collect prescriptions etc. – we now have a very active one with over 100 volunteers in the Cotswold village where I live.

Some local councils are also assisting with coordinating aid and some local shops who don’t normally deliver are now offering delivery.

  1. Government Guidance: The vulnerable and extremely vulnerable

The two lists produced by the government have, not surprisingly, caused some confusion.

As we have made clear all along in sections L (vulnerable/at risk groups) and M (extremely vulnerable/shielding groups) our main summaries, people with ME/CFS should be regarded as vulnerable in relation to coronavirus infection. This is because there is a strong risk that they will suffer a significant exacerbation of ME/CFS symptoms, or a relapse, if they catch coronavirus.

Anyone with a chronic neurological condition, or another condition on the vulnerable list, or because of their age, should be practising stringent social distancing measures:

ME/CFS is not included as a specific condition in the new list of people who are regarded as being extremely vulnerable. However, if you have another medical condition that is on the extremely vulnerable list, you may be at very high-risk of developing serious respiratory complications from the infection.

If this is the case, then register as an extremely vulnerable person by visiting this Government website. You will be entitled to additional help and support – including home delivery of shopping and medications if you need them.

You should also be practicing shielding measures and avoiding all contact with other people for 12 weeks from the date you receive your letter from NHS England (if you haven’t received a letter by 30 March you are advised to contact your GP surgery).

Please note that if you are taking a drug called fludrocortisone for Postural Orthostatic Tachycardia Syndrome (PoTS), which helps to increase blood volume, this drug can cause immune-system depression.

One of the categories in the extremely vulnerable list is, “People on immunosuppression therapies sufficient to significantly increase risk of infection”.

It could be worth speaking to your GP to see if they think given your personal situation, you are at increased risk of infection.

  1. Research

Research that is being funded through the MEA Ramsay Research Fund is continuing where possible. Dr Shepherd has chaired a video conferencing meeting of the Biobank Steering Group and joined a Board meeting for the CMRC Research Collaborative.

The ME Biobank is continuing to operate at the Royal Free Hospital but no patient contact is being made in relation to new blood-sample collection. We are also processing funding for an exciting new research project – although it remains uncertain when this can start as it will involve patient recruitment.  

A new warning from the FDA about the potential dangers associated with coronavirus and faecal microbiome transplants (FMTs) illustrates how this infection is going to have an impact on research activity relating to ME/CFS, especially any studies that require patient involvement.  

We are in contact with all the research groups that we fund where patient contact is involved and are discussing how this affects the progress of their research.

FDA announcement:

  1. The new NICE clinical guideline on ME/CFS 

In my capacity as a member of the committee that is preparing the new NICE clinical guideline on ME/CFS, I took part in two days of video conferencing meetings on 17 and 18 March.  

However, NICE has decided to halt all further work on this guideline due to many of the clinical staff on the committee (myself included) being heavily involved with our duties in relation to coronavirus. 

My personal view is that it now seems very unlikely that we will be able to meet the current target of publishing the new NICE guideline in December 2020 and a more realistic date might be Spring 2021.

NICE has also been contacted about guidance on how people with serious pre-existing health problems should be managed if they must be admitted to hospital with coronavirus infection.

  1. Can pets transmit the infection?

The view from the experts at present is that humans cannot catch the virus from pets and pets cannot catch the virus from humans. However, this is another area of scientific uncertainty and to err on the side of caution, you should avoid touching other people’s pets, and avoid your own pets licking you!

There is now a report of tigers in Bronx Zoo in America having the infection – possibly from a zoo keeper.

Government guidance on pets:

https://www.gov.uk/guidance/coronavirus-covid-19-advice-for-people-with-animals
  1. Possible forms of treatment  

As noted in section A of our full website summary, a number of experimental treatments are now being assessed and clinical trials into three possible drugs – including the antiviral drugs lopinavir and ritonavir that are used to treat HIV infection – are also taking place in UK hospitals. One of the other developments is the use of what is called convalescent plasma where blood plasma from people who have been infected, recovered, and developed antibodies is given to those who are infected and those who care for them in an attempt to reduce or avoid full-blown infection:

The Guardian: Coronavirus survivors’ blood plasma could be used to fight infection.

  1. What should people with ME/CFS do if they catch Cv19? What should previously healthy people do if they experience symptoms suggestive of post-infectious fatigue and/or ME/CFS? 

Not surprisingly, we are now starting to receive occasional reports from people with ME/CFS who are making a slow recovery and/or experiencing a significant exacerbation of their ME/CFS symptoms after catching Cv19.  However, I am not currently aware of anyone with ME/CFS who has been admitted to hospital with severe respiratory problems.

In our current state of knowledge we don’t know with any certainty whether people with ME/CFS are more susceptible to catching Cv19 as a result of their immune system dysfunction, which includes low level immune-system activation, and whether as a result they are more vulnerable to developing the more respiratory serious complications.  What does seem highly likely is that people with ME/CFS will probably develop an exacerbation of symptoms, or a relapse of symptoms – because a new and significant infective episode is a common cause of exacerbation/relapse in ME/CFS.

I am also aware through personal and media reports of a few previously healthy people who are now experiencing what could be a post-infection fatigue syndrome following Cv19 infection.   This is not surprising given that fatigue is often a very prominent symptom of this infection and there are some good epidemiological studies (ie the Dubbo research that Ian Hickie et al carried out in Australia) to show that post-infection fatigue can affect around 10% or people in this sort of situation.

Dubbo reference: https://www.ncbi.nlm.nih.gov/pubmed/16950834

As to how we might carry out some research to investigate what is happening to people after the acute infection is over, this was discussed at the recent ME Biobank Steering Group meeting  (as there are plenty of epidemiologists at the London School of Hygiene and Tropical Medicine – some of whom are looking at Cv19) and at the CMRC Board meeting last week – where Prof Chris Ponting is taking a special interest.  

One possible route here would be to make use of the baseline information  on people who already have clinical data and blood samples stored at the UK Biobank but did not have PVFS or ME/CFS at the time of enrolment and then go on to develop prolonged fatigue, or a fatigue syndrome following Cv19 infection. 

As far as management is concerned, the guidance is fairly similar when it comes to people with ME/CFS who experience an exacerbation or relapse, and previously healthy people who are not getting better after 7 to 10 days and have symptoms suggestive of a post viral fatigue syndrome.

The basics being >>

–  Old-fashioned convalescence involving very careful pacing of physical and mental activities

–  Attention to good nutrition – as some people with Cv19 are experiencing weight loss

– Good sleep management in relation to either unrefreshing sleep or increased sleep (hypersomnia)   

–  Returning to the GP if new symptoms develop, or a fever or chest symptoms continue, or get worse

Health and care professionals often carry on working when they are ill but in this case they should avoid any pressure to return to work until they feel that they are fully capable of doing so.

  1. Hospital-based referral services for ME/CFS

Hospital staff across a number of disciplines are now being retrained to work in other wards, including the care of Cv19 patients, and this applies to those working in the ME/CFS clinics.  So we are now starting to hear about ME/CFS referral services that are reducing their level of service and cancelling out patient appointments. So it looks as though these ME/CFS services will be operating with very limited capacity for at least the next three months. If you have an urgent query it is still worth contacting the service to see if there is someone available who can provide information or guidance over the phone.

BUSINESS AS USUAL

Featured

Many of you have asked me what is going to happen with your Vegepa supply.  Of course I appreciate that you’re worried.  

So this is a quick note to let you know that it’s “BUSINESS AS USUAL” and “PLEASE DON’T CUT BACK ON YOUR VEGEPA INTAKE”.

Members are understandably stockpiling and I’m run completely off my feet!! But I’ve just taken a huge delivery of all 4 products and my Post Office is definitely NOT closing so it’s a green light as usual!

Royal Mail may be a bit slower than usual and their prices have just gone up a tad but otherwise have no fear and DON’T CUT BACK ON YOUR DOSE OF 8 PER DAY (you need all the immune system boosting you can get!)

Please take the very best care of yourself that you can manage, until next time, Lynne

BUSINESS AS USUAL!!

Dear Members,

Many of you have asked me what is going to happen with your Vegepa supply.  Of course I appreciate that you’re worried.  

So this is a quick note to let you know that it’s “BUSINESS AS USUAL” and “PLEASE DON’T CUT BACK ON YOUR VEGEPA INTAKE”.

The note is brief because Members are understandably stockpiling and I’m run completely off my feet!!

But I’ve just taken a huge delivery of all 4 products and my Post Office is definitely NOT closing so it’s a green light as usual!

I have no intention whatsoever of increasing my prices in case you may be wondering if I’m going to take advantage of the current global situation!

Royal Mail may be a bit slower than usual and their prices have gone up a tad this week but otherwise have no fear and DON’T CUT BACK ON YOUR DOSE OF 8 PER DAY (you need all the immune system boosting you can get!)

Please take the very best care of yourself that you can manage, until next time, 

Lynne

MEA Newsletter

MEA Press Release: Vital new research could lay bare the cause of one of world’s cruellest illnesses

The ME Association announces three new research grants into an incurable disease that affects 250,000 Brits 

Vital research funding that could lay bare the cause of one of the world’s cruellest illnesses can today be announced by the ME Association. 

The UK charity is proud to reveal it is funding three new projects to help solve the mysteries of myalgic encephalomyelitis – also known as chronic fatigue syndrome – and how it is treated. 

Manifesting as unrelenting exhaustion, profound pain, memory difficulties and worsened mobility, ME is destroying the lives of 250,000 people in the UK, including children and teenagers.

One in four are so severely affected that they are rendered housebound or bedbound – with some even reliant on tube feeding. Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, or even days.

There is no known cure – and worse still, there remain vast misconceptions and ignorance surrounding the illness – even in medical circles.

Today, campaigning charity The ME Association can announce a new tranche of funding totalling almost £200,000 through its Ramsay Research Fund

The charity – which relies solely on donations and membership fees – has already invested more than a million pounds in biomedical research. 

It considers quality research to be a key priority as it offers the best hope for better understanding, improved diagnosis and treatment. 

ME Association Medical adviser, Dr Charles Shepherd, said: 

“The ME Association is delighted to announce that our Ramsay Research Fund has been able to make three major research grants totalling nearly £200,000.

“All three projects constitute major steps forward in helping to understand the underlying cause of ME, the search for a diagnostic biomarker, and the provision of more effective management – especially during the crucial early stages of this illness.

“Thanks must go to our many loyal supporters and fundraisers who have been raising money for medical research into the cause and treatment of ME.”

Grant One: The UK ME/CFS Biobank (£99,766)

The world-leading ME/CFS Biobank (UKMEB) is the only one of its kind in the UK. Here, the analysis of blood samples could reveal crucial biomarkers to provide a deeper understanding of what causes ME, and how it could be accurately diagnosed and treated.

The project, led and managed by the Biobank team at the London School of Hygiene & Tropical Medicine, is funded through the ME Association’s Ramsay Research Fund. 

This new ME Association funding will sustain and allow the Biobank to expand over the next two years and ensure a steady supply of blood samples to ME researchers around the world. 

Jack Butterworth, a Project Manager at the Biobank, said: 

“Over the past two years we have released samples to six research institutions in the UK alone, and many more in Europe, South America, Asia and the USA. 

“The new, two-year award will build on that success, enabling further releases and the replenishment of depleted samples. 

“The award will also enable further communications and fundraising projects, raising the Biobank’s income and reducing its reliance on grant funding.

“The funding will also allow the team to continue to work to develop biobanks elsewhere in the world, using protocols that are harmonised with the UKMEB’s. Exciting work is already underway in the USA, Canada and Australia.

“The UKMEB continues to be an example to biobanks in ME/CFS and in other fields and has published its work in peer-reviewed journals and presented at major conferences.”

Grant Two: Dr Karl Morten and the University of Oxford (£69,150)

The ME Association is delighted to announce it has granted vital funding to Dr Karl Morten and colleagues at the University of Oxford, who are investigating blood abnormalities in ME patients. 

The funding will enable scientists to continue examining a link between blood plasma abnormalities and dysfunctional mitochondrial energy production in ME patients. 

This grant will also help to bring in more Oxford researchers from various disciplines and create a Centre of Excellence for ME Research in Oxford.

The Oxford team will be working closely with Dr Pawel Zalewski from Nicolaus Copernicus University, in Poland and using samples from his own work on ME.

Dr Karl Morten said: 

“We are extremely grateful to the ME Association for providing funding for our new 12-month project exploring the plasma factors in ME/CFS and their impact on mitochondrial function.

“This study will compare ME/CFS patients with patients diagnosed with other fatigue-inducing conditions to look at changes in mitochondrial dynamics.”

Grant three: Dr Keith Geraghty and the University of Manchester (£25,000)

The third grant goes to Dr Keith Geraghty and colleagues at the University of Manchester, where it will be used to analyse what happens to ME patients in the crucial time between the onset of their symptoms and a diagnosis being made. It is the first-time research in this area has been commissioned on such a level.

Dr Shepherd said: 

“This is a key part of the patient journey where we know that there are serious problems in both obtaining an early and accurate diagnosis, and then being given appropriate advice on management.”

The results will also be fed into the development of the new NICE (The National Institute for Health and Care Excellence) clinical guideline on the diagnosis and management of ME/CFS.

Dr Geraghty said: 

“ME is a disabling condition that greatly impacts the lives of sufferers. Many report problems getting an early diagnosis and appropriate medical care.

“We found almost no research on the ‘diagnosis of ME/CFS’, specifically how long it takes patients to get a diagnosis in the UK and the process patients go through to get a diagnosis.

“We want to explore this topic to better inform clinical practice and guidelines for treatment.”

Why funding The ME Association is vital and how you can help

Less than £1 is spent each year per person suffering from ME by the Government and there is a chronic lack of funding for medical research. Many doctors still don’t know how to diagnose or manage the condition.

A parliamentary debate last year was told how people with ME are six times more likely to commit suicide. We desperately need to learn more about the disease to improve diagnosis and develop effective treatments.

Research grants are made by the ME Association from funds generated by donations and fundraising drives. 

The ME Association Ramsay Research Fund

We are a national charity working hard to improve the lives of people devastated by an often-misunderstood neurological disease. 

We believe biomedical research offers the best hope to people affected by M.E. If you would like to support our investment then please donate to the Ramsay Research Fund. 

Just click the image opposite to visit our JustGiving page for single donations, to establish a regular payment or to begin fundraising.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.


ME Association Registered Charity Number 801279

New Product released!!!

NOW THIS IS REALLY BIG NEWS!!!

I’ve managed to secure for us, from the same, trusted manufacturer IGENNUS, the enormous and totally unique discount (from £9.60 instead of £13.99) on their perfect sister product…

Omegaflex is an advanced formulation containing a patented blend of effective nutrients that replenish and protect the joints.

The specially selected natural ingredients in Omegaflex protect joints against oxidative stress, support connective tissue and maintain healthy collagen formation and normal cartilage function. 

Omegaflex combines glucosamine hydrochloride and omega-3 EPA from wild anchovy oil with GLA from organic, cold-pressed evening primrose oil, plus manganese, molybdenum and vitamins C & E.

This is of great interest for anyone you know suffering with arthritis or stiff, painful joints or who wishes to avoid them!

For those of you who have ME with stiff, painful joints, you could try taking 4 a day along with your usual Vegepa dose and maybe increase this during autumn and winter.

OmegaFlex is the same heavily discounted price as “normal” Vegepa!!!

Ooh..we’ve gone all e-commerce!!

Featured

My very clever friend Chris has been busy working on our new website
which, from now on, boasts a proper e-commerce site!

At long last, Vegepa Club has reached adulthood!

You can now pay, as you do on all “normal” websites, using your card (credit or debit) or even using your PayPal account balance, directly from
our brand new ordering page!! Order and pay in one fell swoop!!!

You can still choose to pay by bank transfer (but why would you now?)
or PayPal’s instantaneous Friends & Family (which does save Vegepa Club from paying PayPal’s fees) but you’ll have to leave our website to do so
(as you’ve been doing up until now). 

choices, choices….!

We hope you’ll enjoy this exciting, new facility, (brought to you by PayPal Banking), which will save both of us a great deal of precious time and energy.

New!!! Omegaflex

Featured

I’ve managed to secure for us, from the same, trusted manufacturer IGENNUS, the enormous and totally unique discount (from £9.60 instead of £13.99) on their perfect sister product… Omegaflex

Omegaflex is an advanced formulation containing a patented blend of effective nutrients that replenish and protect the joints.

The specially selected natural ingredients in Omegaflex protect joints against oxidative stress, support connective tissue and maintain healthy collagen formation and normal cartilage function. 

Omegaflex combines glucosamine hydrochloride and omega-3 EPA from wild anchovy oil with GLA from organic, cold-pressed evening primrose oil, plus manganese, molybdenum and vitamins C & E.
This is of great interest for anyone you know suffering with arthritis or stiff, painful joints or who wishes to avoid them!

Important News!

My very clever friend Chris has been busy working on our new website
which, from now on, boasts a proper e-commerce site!!

At long last, Vegepa Club has reached adulthood!



You can now pay, as you do on all “normal” websites, using your card (credit or debit) or even using your PayPal account balance, directly from
our brand new ordering page!!

Order and pay in one fell swoop!!!

You can still choose to pay by bank transfer (but why would you now?)
or PayPal’s instantaneous Friends & Family (which does save Vegepa Club from paying PayPal’s fees) but you’ll have to leave this website to do so. 

choices, choices….!

We hope you’ll enjoy this exciting, new facility, (brought to you by PayPal Banking), which will save both of us a great deal of precious time and energy.

Unfortunately, I’ve had to (ever so slightly) increase the shipping cost, due to Royal Mail’s price hike last March plus the fact that I can no longer personally afford to pay for this increase as well as provide our excellent, (certified biodegradable) packaging. 

NOW THIS IS REALLY BIG NEWS!!!

I’ve managed to secure for us, from the same, trusted manufacturer IGENNUS, the enormous and totally unique discount (from £9.60 instead of £13.99) on their perfect sister product…

Omegaflex is an advanced formulation containing a patented blend of effective nutrients that replenish and protect the joints.

The specially selected natural ingredients in Omegaflex protect joints against oxidative stress, support connective tissue and maintain healthy collagen formation and normal cartilage function. 

Omegaflex combines glucosamine hydrochloride and omega-3 EPA from wild anchovy oil with GLA from organic, cold-pressed evening primrose oil, plus manganese, molybdenum and vitamins C & E.

This is of great interest for anyone you know suffering with arthritis or stiff, painful joints or who wishes to avoid them!

For those of you who have ME with stiff, painful joints, you could try taking 4 a day along with your usual Vegepa dose and maybe increase this during autumn and winter.

And here I go again ….

reminding you that it’s a very bad idea to interrupt
your Vegepa intake, even for one day, as you may well then suffer from worsened symptoms!!  

Please don’t forget the recommended Vegepa dose for ME is 8 capsules every single day without a break

This works out typically at £1.30 per day. Not much to pay considering
all the health benefits of taking an ultra pure, pharmaceutical grade supplement!

Other medical conditions may require lower doses.

I’ve been heavily investing as often as possible in stocks of Vegepa so we can keep going well into the future.

Many of you have expressed concern as to what might happen to you
if production were ever to dry up. You need have no worries on that score!!
My current stock of Vegepa doesn’t expire until December 2021!

Fat lot of help!!

Finally, I’d like to thank you for your generous donations to crucial biomedical research into ME.  This money is in addition to that which Vegepa Club automatically donates with every single box it sells.

So far we’ve donated about £60,000!!!

Wishing you much healthier times just around the corner,
 Lynne (& Ollie The Dog/Chief Assistant)

 Check out our latest news on Facebook https://www.facebook.com/VegepaClub/ 
To order right click the green button

 

A Brief Refresher on Doses

I’m sorry to hear, X, that you’re going through a very hard patch at the moment.

I sound like a broken record but you just have to accept that if you stop taking Vegepa your symptoms may well recur at some stage.  


There is a maintenance dose of 4 per day but I only recommend this if you’ve been symptom free for 6 months or so.  


Otherwise it’s 8 Vegepa per day, every single day, and, when you’re especially poorly, or if there’s a particularly stressful period in your life, then taking 10 per day will help your system to cope even better and build up your resilience.


We’re coming up to the virus and infection months of September, October and November so please take as much Vegepa as you can financially afford.

Remember that cutting back financially is cutting back on your health and wellbeing!


Kind regards,

Lynne

Great news from Sweden!

He Lynne! I’ll be visiting family in Germany for a couple of weeks in May, that’s why I have a different (German) delivery address with this order.

I’m truly happy with the effect of high dosage Vegepa so far. I’ve felt a slight but noticeable improvement of symptoms and I’m excited to keep going and hope that things might stabilize even further. Kind regards from Sweden,

V x

Thanks to all our Members who’ve raised more than £60,000 to date!!

Lynne has asked if I would pen a short editorial to update Vegepa Club’s generous Members on what research the ME Association’s Ramsay Research Fund (RRF) has been funding over the past year and our plans for the year ahead.

The main focus during the past year has been with the ME Biobank – which forms part of the main University College Biobank at the Royal Free Hospital in London.  The RRF is the sole funder of ME Biobank – which currently costs us around £80,000 per annum

The ME Biobank is now recognised both here and abroad for the high quality of blood samples and clinical data it is providing to researchers.  As a result, it is dealing with requests for blood samples on an international basis.  The ME Biobank is also carrying out research into both viral infection and immune dysfunction for the National Institutes of Health in America and some of the early results from this major study should be published this year

Some of the other research studies that are currently being funded by the RRF include 

  • Dr Karl Morten and Professor James McCullagh at the University of Oxford are investigating metabolites – chemical markers that remain in the blood after chemical resactions have taken place at a cellular level
  • Profesor Stephen Todryk at the University of Northumbria is completing another study on immune dysfunction
  • Professor Jo Cambridge at University College is examiningt the link between immune system dysfunction and a defect in the way that muscle cells are producing energy
  • Dr Elisa Oltra in Spain is using blood samples from the ME Biobank to look for abnormalities in people with severe ME

All of these research studies are aiming to find important clues about the causation of ME and the discovery of biomarkers that can be used to help confirm a diagnosis of ME 
During the coming year we will be supporting and possibly funding further work at both Oxford and the ME Biobank – where funding and support is starting to create two Centres of Excellence for ME research
As you can see from the basic running costs at the ME Biobank, medical research has, become very costly to carry out – which is why we are so grateful for all the funding support that comes from all of you at The Vegepa Club.

Dr Charles Shepherd

Hon Medical Adviser, MEA

More info

Website summary of all the research being funded by the RRF:

https://www.meassociation.org.uk/research/

The ME Biobank

https://cureme.lshtm.ac.uk

Privacy Policy changes

We’re committed to your privacy!

A new data privacy law is being introduced later this month in the UK called the General Data Protection Regulation or GDPR.  

(yawn!)
 
As a result, we’re obliged to update our Privacy Policy

(double yawn!)

to make it easier for you to find out how we collect, store and handle your personal data as well as:-

• Your rights in relation to the information we hold about you
• How we keep your personal information secure
• The types of personal information held by Vegepa Club and

how we collect and use it
• The legal grounds for how we use your information

and we have to let you know we’ve done so!

(triple yawn!)

How to find out more
 
Our new (rather boring but obligatory) Privacy Policy can be found here 

https://www.vegepaclub.com/privacy/ 

and is effective from 25th May, 2018.

If you wish to unsubscribe from my occasional Newsletters (though you may miss out on special promos and offers), or to update your details, use the link at the bottom of this page.


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look for any green “Order Now” button – they look like this one below Or click here



Don’t forget, your password is melon



You can now see our amazing prices at a glance before you start ordering!
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I always nag you but it’s a very bad idea to interrupt your Vegepa intake, even for one day, 
as you may well then suffer from worsened symptoms!!

Please don’t forget the recommended Vegepa dose for ME is 

8 capsules every single day without a break

This works out at typically £1.30 per day.
Not much to pay really considering all the health benefits.

(Other medical conditions require lower doses).
 

I’ve been heavily investing as often as possible in stocks of Vegepa so we can keep going well into the future.
Many of you have expressed concern
as to what might happen to you if production were ever to dry up.

You need have no worries on that score!!

Current stocks of Vegepa are valid until autumn 2020!


Finally, I’d like to thank you for your
generous extra donations to Crucial Biomedical Research into ME.  These invaluable gifts are in addition to those which Vegepa Club donates
with every box of Vegepa or Echiomega it sells.


Wishing you much healthier times just around the corner,

Lynne
(& Ollie The Dog/Chief Assistant)

Check out our latest news on Facebook https://www.facebook.com/VegepaClub/ 

Are you intolerant to milk?

FROM ME RESEARCH UK
Around 20% of people in developed societies have adverse reactions to particular foods, and some have outright food intolerances, defined as undesirable non-allergic reactions that do not involve a direct immune response. The most common food ‘sensitivities’ in the modern world are to gluten, lactose, fructose, milk and eggs, but there are a plethora of other candidates.

Food intolerances also have a significant role in ME/CFS. Sensitivity to foodstuffs is one of the possible “immune, gastro-intestinal & genitourinary impairments” used for diagnosis (see the 2011 ICC definition), and many individual patients say that they benefit from avoiding certain foods. Gluten is a good example, and we know from emails and phone calls to ME Research UK that excluding gluten from the diet improves some patients’ symptoms. These symptoms not only include gut discomfort (abdominal pain, bloating etc.) as might be expected but more systemic manifestations such as brain fog, headache, joint and muscle pain. Now, a report from John Hopkins University suggests that milk protein may also be contributing to symptoms, at least in some ME/CFS patients.

The very active group led by Prof Peter Rowe at Johns Hopkins University School of Medicine in Baltimore has been conducting a two-year cohort study of physical findings and outcomes in young people with ME/CFS. One of the beauties of a programme of research is that unexpected observations can be followed up, and the group had noticed that a number of their patients had symptoms and signs consistent with a delayed reaction to milk protein.

Lactose is one of the constituents of milk that can contribute to intolerances (Cohen cartoons http://bit.ly/2c21A47)

Lactose is one of the constituents of milk that can contribute to intolerance (Cohen cartoons http://bit.ly/2c21A47)

To test whether milk intolerance might be a factor in the maintenance of illness, they designed a sub-study to examine overall quality of life (including fatigue, sleep and activity limitations caused by physical health problems) before and after a 6-month period of dietary milk protein restriction. Intolerance to milk protein is diagnosed on clinical grounds alone because no validated laboratory tests exist as yet, so the team performed an initial dietary trial. Of 55 young ME/CFS patients,  17 (31%) were found to be milk-protein intolerant. In the testing phase of the study, a clinically important improvement in the frequency and severity of symptoms was reported by some participants once milk protein was eliminated from their diet. These patients were then put on a milk-free diet for 6 months, and their quality of life was compared at the start and end of the study with that of patients who could tolerate milk protein.

At the start of the study, health-related quality of life was significantly worse in patients who were milk protein intolerant than in those who were not. However, six months after the milk-free diet, quality of life had improved to a greater degree in the patients with milk protein intolerance, and there was no longer a difference in quality of life between the two groups. Also, milk-intolerant patients on the milk-free diet had improvements in upper gastrointestinal and systemic symptoms, and these improvements occurred within two weeks of starting the diet. Of course, as this was not a randomised trial, it’s not possible to say that these effects were due to the milk-free diet alone. The evidence is certainly suggestive, however, and it may be that a milk-free diet could have a significant positive effect in some ME/CFS patients.

For the authors, the importance of the results is that almost a third of adolescents and young adults with ME/CFS “had evidence of treatable milk protein intolerance”, a higher proportion than expected given the evidence that the prevalence of ‘true’ reactions to food may be quite small in the general population (read more). Crucially, most of the study patients who benefitted from a milk-free diet  had previously been unaware of the contribution of milk to their symptoms, probably because of the time delay between consumption and symptoms (unlike in true food allergy where symptoms develop far more rapidly). The authors point out that for patients with ME/CFS the situation can be clarified by a two-week trial of a milk-free diet. While stopping or reducing milk consumption is not the ‘answer’ to ME/CFS, it’s worth being aware that the symptoms of ME/CFS may be exacerbated in some people by milk, a common foodstuff. If patients’ experience of avoiding gluten is anything to go by (read more), the effects of a milk-free diet for a short period could be both surprising and welcome.

A Very Common Question

  • Is it better to take my Vegepa all together as one dose, or should I take all 8 together or 4+4?

Also is it best to take morning or evening if all together?

MA

 

Hi M,
It really doesn’t matter.

If your stomach is particularly sensitive then it makes sense to take your daily Vegepa in 2 or even 4 doses of 2 each time.

When to take – at the same time (ish) every day so you get into a routine and are less likely to forget to take them.

With or without food but with food means you’ll probably be reinforcing the previous note.

The 2 VERY IMPORTANT points are:-


A. Take 8 Vegepa every single day (he f you have ME), with NO interruptions.


B. Wash your capsules down with a COLD drink. If not you’ll get fishy burps as a hot drink will melt the capsule’s shell before it reaches your stomach.

Hope this helps.

All the best,

An oh so typical teenage story 😔

Dear Lynne,

Feel free to quote what we’ve said about our son.
His name is Sam and he is 17 now.
Sam has spent most of the last two years out of school and received home tuition from the Out of School Tuition Service, he took four GCSE’s at home last summer and passed them all. (Our goal was to take them not pass them!)
Sam started sixth form and loved being back at school, unfortunately I think it was too much too soon so has been absent from school for a couple of months now.

Although he is suffering very much with fatigue his mental capacity hasn’t relapsed too much and we are putting that down to the Vegepa.
When Sam was very ill previously he could hardly put a sentence together or comprehend instructions or conversations.
It is so encouraging to hear of stories like your daughter’s, and know that one day there will be recovery; we have to keep positive as a family and remind Sam there will be lots of time for his education when he is well.
We appreciate the work you do and the donations to the Biobank.
Kind regards and many thanks,
K and G

The Benefits of Taking 8 Vegepa for ME/CFS

Number 8

Hi Lynne

Just a side note re the 8 caps a day.  I have recently starting taking the full dose again as now I’ve reached the grand old age of nearly 52 I’ve noticed that my skin definitely benefits from it.

The skin on my face I think is a little softer so I guess from a vanity point of view that’s a good enough reason for me to take the 8.

From a ME point of view I probably don’t need the full dose but I do believe that your body never fully recovers from this and like any virus can lay dormant.

I’m a prime example of this, having suffered terribly even to the point of not working full time etc with ME to making what I would say as good a recovery as anyone could, however, because I later developed a stomach condition which put added stress on my body and had a full blown relapse and by that I mean full blown to the point I had to leave work for a year.

Lynne in that year my sister in law who bizarrely also started suffering with CFS, which it was then branded as, told me about Vegepa and I started to take it.

Within 3 months my head symptoms, which were my worst symptom, improved significantly.  I used to say that those 8 little pills saved my life because within that year I wasn’t getting better at all and I knew all about the Pacing etc etc it just had a hold of me and there was no way out.

So back to the present I’m now in Peri-menopause and believe the tiredness and some strange symptoms are from that but best to protect myself anyway and any prolonged stress in my stomach could send me right back to those dark days again.

So Lynne for now I’m taking the 8 capsules again.

Just wanted to share, I know you must hear loads of stories but just as a side note, the benefits to  ladies of a certain age is also something worth shouting about.

Best Regards,

Angela

xx

November Coughs and Colds

foods-high-in-vitamin-c images-3Käse, Quark

Hi Helen,

As you’ve learned from bitter experience, this is the season of coughs, colds and infections and people with ME are more susceptible than others.

All you can do is to take even better loving care of yourself and perhaps increase your Vegepa dose to 10 capsules per day until you’re over this chesty cough.

Drink plenty of fluids, especially hot lemon and honey as often as you can and increase your intake of yellow, orange and red fruit and vegetables.

Aim to keep your body at a steady temperature, go outside if you feel like it as sunlight is always a valuable immune booster but dress up warmly and come back into a warm house!

Take less or no dairy foods and try to raise your head and shoulders with a few extra pillows at night to increase circulation and prevent the phlegm settling on your chest.

This will pass soon enough and with your abundance of patience (one of the positive lessons from ME!) you’ll be back to normal and ready for the stresses of Christmas!

On 30 Oct 2016, at 10:38, Helen  wrote:

Dear Lynne,

Thanks once again for my recent order. I hope all is well with you.
I have been suffering with a chesty cold, but expect to be soon “back to normal”!

Very best wishes,
Helen

Chemical signature for CFS identified!

Full research paper:  http://www.pnas.org/content/early/2016/08/24/1607571113.full.pdf

Notification of this interesting research and the summary below, was kindly brought to us by one of our Members, Anabela Numao.

Wednesday, August 31, 2016

http://cfstreatment.blogspot.co.uk/2016/08/researchers-identify-characteristic.html?m=1

Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome

By Scott Lafee

Press Release: U.C. San Diego, August 29, 2016.

Chronic fatigue syndrome (CFS) is a mysterious and maddening condition, with no cure or known cause. But researchers at the University of California San Diego School of Medicine, using a variety of techniques to identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation.

Dauer is the German word for persistence or long-lived. It is a type of stasis in the development in some invertebrates that is prompted by harsh environmental conditions. The findings are published online in the August 29 issue of PNAS.

“CFS is a very challenging disease,” said first author Robert K. Naviaux, MD, PhD, professor of medicine, pediatrics and pathology and director of the Mitochondrial and Metabolic Disease Center at UC San Diego School of Medicine. “It affects multiple systems of the body. Symptoms vary and are common to many other diseases. There is no diagnostic laboratory test. Patients may spend tens of thousands of dollars and years trying to get a correct diagnosis.”

As many as 2.5 million Americans are believed to have CFS. It most often afflicts women in their 30s to 50s, though both genders and all ages can be affected. The primary symptom is severe fatigue lasting at least six months, with corollary symptoms ranging from muscle pain and headaches to sleep and memory problems.

Naviaux and colleagues studied 84 subjects: 45 men and women who met the diagnostic criteria for CFS and 39 matched controls. The researchers targeted 612 metabolites (substances produced by the processes of metabolism) from 63 biochemical pathways in blood plasma. They found that individuals with CFS showed abnormalities in 20 metabolic pathways. Eighty percent of the diagnostic metabolites measured were decreased, consistent with hypometabolic syndrome or reduced metabolism. The diagnostic accuracy rate exceeded 90 percent.

“Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability.”

Naviaux said the findings show that CFS possesses an objectively identifiable chemical signature in both men and women and that targeted metabolomics, which provide direct small molecule information, can provide actionable treatment information. Only 25 percent of the metabolite disturbances found in each person were needed for the diagnosis of CFS. Roughly 75 percent of abnormalities were unique to each individual, which Naviaux said is useful in guiding personalized treatment.

“This work opens a fresh path to both understanding the biology of CFS and, more importantly to patients, a robust, rational way to develop new therapeutics for a disease sorely in need of them.”

The study authors noted additional research using larger groups of participants from diverse geographical areas is needed to validate both the universality and specificity of the findings.

Co-authors include: Jane C. Naviaux, Kefeng Li, A. Taylor Bright, William A. Alaynick, and Lin Wang, all at UC San Diego; and Asha Baxter, Neil Nathan, Wayne Anderson, and Eric Gordon, Gordon Medical Associates.

Funding for this research came, in part, from the UC San Diego Christini Fund, The Wright Family Foundation, The Lennox Foundation, the It Takes Guts Foundation, the UC San Diego Mitochondrial Disease Research Fund and gifts from Tom Eames and Tonye Marie Castenada.

For more information about CFS and mitochondrial research, visit naviauxlab.ucsd.edu

Journal Reference: Robert K. Naviaux, Jane C. Naviaux, Kefeng Li, A. Taylor Bright, William A. Alaynick, Lin Wang, Asha Baxter, Neil Nathan, Wayne Anderson, Eric Gordon. Metabolic features of chronic fatigue syndrome. Proceedings of the National Academy of Sciences, 2016; 201607571 DOI: 10.1073/pnas.1607571113

 

Researchers Identify Characteristic Chemical Signature for CFS!

http://cfstreatment.blogspot.co.uk/2016/08/researchers-identify-characteristic.html?m=1

This was kindly brought to my attention by one of our Members Anabela Numao.

Wednesday, August 31, 2016
Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome

By Scott Lafee

Press Release: U.C. San Diego, August 29, 2016.

metabolomics

Chronic fatigue syndrome (CFS) is a mysterious and maddening condition, with no cure or known cause. But researchers at the University of California San Diego School of Medicine, using a variety of techniques to identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation.

Dauer is the German word for persistence or long-lived. It is a type of stasis in the development in some invertebrates that is prompted by harsh environmental conditions. The findings are published online in the August 29 issue of PNAS.

“CFS is a very challenging disease,” said first author Robert K. Naviaux, MD, PhD, professor of medicine, pediatrics and pathology and director of the Mitochondrial and Metabolic Disease Center at UC San Diego School of Medicine. “It affects multiple systems of the body. Symptoms vary and are common to many other diseases. There is no diagnostic laboratory test. Patients may spend tens of thousands of dollars and years trying to get a correct diagnosis.”

As many as 2.5 million Americans are believed to have CFS. It most often afflicts women in their 30s to 50s, though both genders and all ages can be affected. The primary symptom is severe fatigue lasting at least six months, with corollary symptoms ranging from muscle pain and headaches to sleep and memory problems.

Naviaux and colleagues studied 84 subjects: 45 men and women who met the diagnostic criteria for CFS and 39 matched controls. The researchers targeted 612 metabolites (substances produced by the processes of metabolism) from 63 biochemical pathways in blood plasma. They found that individuals with CFS showed abnormalities in 20 metabolic pathways. Eighty percent of the diagnostic metabolites measured were decreased, consistent with hypometabolic syndrome or reduced metabolism. The diagnostic accuracy rate exceeded 90 percent.

“Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability.”

Naviaux said the findings show that CFS possesses an objectively identifiable chemical signature in both men and women and that targeted metabolomics, which provide direct small molecule information, can provide actionable treatment information. Only 25 percent of the metabolite disturbances found in each person were needed for the diagnosis of CFS. Roughly 75 percent of abnormalities were unique to each individual, which Naviaux said is useful in guiding personalized treatment.

“This work opens a fresh path to both understanding the biology of CFS and, more importantly to patients, a robust, rational way to develop new therapeutics for a disease sorely in need of them.”

The study authors noted additional research using larger groups of participants from diverse geographical areas is needed to validate both the universality and specificity of the findings.

Co-authors include: Jane C. Naviaux, Kefeng Li, A. Taylor Bright, William A. Alaynick, and Lin Wang, all at UC San Diego; and Asha Baxter, Neil Nathan, Wayne Anderson, and Eric Gordon, Gordon Medical Associates.

Funding for this research came, in part, from the UC San Diego Christini Fund, The Wright Family Foundation, The Lennox Foundation, the It Takes Guts Foundation, the UC San Diego Mitochondrial Disease Research Fund and gifts from Tom Eames and Tonye Marie Castenada.

For more information about CFS and mitochondrial research, visit naviauxlab.ucsd.edu

Journal Reference: Robert K. Naviaux, Jane C. Naviaux, Kefeng Li, A. Taylor Bright, William A. Alaynick, Lin Wang, Asha Baxter, Neil Nathan, Wayne Anderson, Eric Gordon. Metabolic features of chronic fatigue syndrome. Proceedings of the National Academy of Sciences, 2016; 201607571 DOI: 10.1073/pnas.1607571113

THANK YOU TESCO!

YES INDEED – EVERY LITTLE BIT DOES HELP!

TESCO

 

I was pleasantly surprised last week to see that Tesco are now selling Vegepa and Echiomega.

 

However, they’re charging £13.99 per box as opposed to Vegepa Club’s £9.70 (Vegepa) and £9 (Echiomega)!!  My prices include shipping right to your door so there’s no need to struggle to a noisy, hideously lit, ME unfriendly supermarket and queue on your feet for the privilege of paying roughly 30% more per box!!

FullSizeRender

IMG_1348

 

depositphotos_1589341-Pile-of-pound-coinsJust look what you’re saving when you order through Vegepa Club!!

And, of course, Tesco isn’t donating a % of their sales to Crucial Biomedical Research into ME. 

I rest my case.

ME and UNI

Many Members and their teenagers are facing the excitement and gruelling prospect of starting University this month. Heres a bit of good advice to the mother of a first year student (“E”) ….

tired
First year Uni is a very challenging time, all those friends to make, all the activities, clubs, socials, timetables, drinking etc etc, not to mention the work!
It’s imperative that “E” takes things easy, practices PACING every single day and, if she agrees, tells her Tutors and the Disability Dept. that she has ME as this will stand her in good stead when she, inevitably, can’t meet deadlines, needs to make changes to her timetable to suit her ME, needs specific help with all sorts of arrangements and, later, has to sit exams.
There are Special Considerations and Arrangements available for her exams, eg. rest breaks with a duvet and pillows in a quiet room, extended time, etc. etc.
Personally I feel it’d be better for her to tell all her friends, when the subject arises, that she has ME as, nowadays, most people, especially the young, know about ME and, hopefully will understand and make allowances for her when she can’t go out with them or can’t stand the noise, needs help carrying heavy books, can’t stand in queues, etc. etc.
This is not advice that should be ignored, in my experience, and relies on E’s willingness to make herself and her illness known. It will pay off in the long run, believe me.
She ought to start with the Disability Dept right away, so it’s on the record and so that they can, if they’re any good and comply with their legal responsibilities, offer her all manner of support, including equipment, dictating software when she just can’t type, special ergonomic chair, a room located to make her life easier, a wheeled case for her heavy books, etc., etc.
All Tips and Comments welcome from any Members who can add to this topic.

Dizziness in ME

Featured

In answer to Linda’s letter at the bottom of this page.

Hi Linda,
Good to hear from you!
In my experience of ME, you can feel dizzy if you stand up, from lying or sitting, too quickly. The same if you’ve been standing for a while – this is a typical ME symptom called Orthostatic Intolerance. Check if you go very pale or even grey when this happens.
Check that you are eating as little sugary food and drink as you can. Eat slow-energy release foods to stop the dizziness and weakness. Eat something every 3 hours and drink lots of water. Sugary foods affect anyone’s blood sugar levels but with ME you have to keep your blood sugar level as steady as possible to help your body produce energy as constantly as possible.
When we’re feeling low, physically and emotionally, we all crave sweet things to perk us up but in a short while, those empty calories run out and you’re left craving all over again. Empty sugars are addictive!
If you need to sit in the shower then you must. This is VERY common in ME and in fact, “whether you find it especially tiring and painful when washing your hair” is one of the diagnostic questions we ask.
Get what my daughter had – I bought a very cheap kid’s plastic stool from IKEA which really helped.

Our £3 IKEA shower stool

Our £3 IKEA shower stool

If you feel dizzy when you’re outdoors try to have a friend with you, drink plenty of water, don’t rush, sit down regularly, don’t carry a heavy load and basically listen to your body.
In the UK, I would be advising you on how to apply for a Blue Badge (Disabled Parking Permit) and all sorts of helpful, practical tips on how to conserve, save and optimise your energy. I had 12 years, 24/7 experience with my daughter.
I’m not medically qualified so if you suspect or are worried that the dizziness might not be ME-related, then please go to see your doctor. It will ease your mind to be able to eliminate anything else which your doctor tests for.
Fretting and worrying are huge ME symptoms, especially during a bad spell, and they use up ALL your energy so you’ve nothing left for doing anything else at all that day (or for many days).
But of course there are things you absolutely have to do like eating, walking up stairs, dressing or undressing, talking etc etc. but even these simple examples use up energy which you don’t have. Your energy “bank balance” is in the red!!
It’s not hard to see why stress is going to bring out your worst ME symptoms as your body tries to cope with the energy demands you keep making.
At times, these demands may be pretty basic compared to how a healthy person, or even you on a good day, manages to achieve without even a thought.
It sounds like this is a bad spell or relapse whether the dizziness is new or if it’s returned. Bad spells are part of ME but they’re always followed by better days!
In ME when things are stable, that’s good news. It’s the peaks and troughs of bad days, and then worse days, that we want to avoid. Whilst things are stable, albeit not brilliant, then the body has a chance to heal itself.
Just accept that either you’ve been pushing yourself a bit too much lately, or that “Life Happened” or simply that ME is very cruel.
After this scary and disappointing lull will come a surprising and occasional better day, and then a smattering of them, albeit spread out, then actual good days and then you’ll find that the bad days aren’t quite so bad, they occur less frequently and they last for a shorter duration.
I hope you’ll find at least one tip helpful in this long ramble and that, once your doctor eliminates any other medical condition, your dizziness disappears.
Let me know how you are in a couple of months,
LYNNE
On 14 Jul 2015 Linda asked:
Hi Lynne.
Do you know if dizzyness is known with ME. All of a sudden I have become so dizzy. I have no one to ask, and dont know what to do. Sometimes it is difficult for me to stand up and take a shower. It id scary. I understand if you dont have time to reply.
All the best from Linda

A Refresher Course on Vegepa’s Unique Properties

Featured

independently-batch-tested v2-01Vegepa

Vegepa E-EPA 70 is a best-selling omega-3 and omega-6 supplement providing fish oil with evening primrose oil – a proven, tried-and-tested patented formula. Vegepa combines omega-3 EPA from marine fish oil with GLA (omega-6) from organic virgin evening primrose oil, providing a highly concentrated source of important omega-3 and omega-6 long-chain fatty acids. This supplement is ideal for maintaining energy levels in people with ME and for supporting cognitive function.

anchovies-01Key features

► High concentration omega-3 and omega-6 capsules with EPA and GLA for daily wellbeing support

► Combination of omega-3 fish oil with evening primrose oil – formulated for noticeable health benefits

► Improves cognitive function and supports cardiovascular health

► Supports energy levels in people with ME

► Helps maintain wellbeing and supports omega-3 and omega-6 balance

► Patented formula, used in clinical trials for children with ADHD; aids learning and attention in children

► Premium organic cold-pressed virgin evening primrose oil contains botanical triterpene antioxidants (protect against free radicals)

► Sustainable high concentration EPA fish oil from wild Pacific anchovies

► Easy-to-swallow capsules

► Contains no artificial colours, flavours or preservatives

evening-primroseDirections

Vegepa is used by tens of thousands of people with many different health conditions other than ME (ME Sufferers must take 8 capsules per day.  ADHD, Alzheimer’s, Depression, Arthritis, Menopause, Parkinson’s, PMT, etc., etc. and therefore they take different doses. Ask me so I can guide you in a private email as to what your particular dose might be CONTACT LYNNE as EU Regs. don’t allow me to publish these here.

pacific-01Indications

EPA is a long-chain omega-3 fatty acid with several important roles in the body. EPA helps to maintain healthy cell signalling and cognitive function and it is also converted by the body into eicosanoids – substances which support cardiovascular health, inflammatory response and normal immune function.

Evening primrose oil is a rich source of the fatty acid GLA. GLA is an integral part of cell membranes, helping to keep them permeable for optimum brain function, as well as being a precursor to favourable eicosanoids. Cold-pressed and non-raffinated (extracted without the use of chemical solvents), our organic evening primrose oil is a botanical source of triterpenes (unlike generic evening primrose oil) – free radical-scavenging substances, which may help to support the immune system.

packaging-02

UK ME/CFS Biobank

Featured

biobank-group-photoThe CURE-ME research team at the London School of Hygiene & Tropical Medicine, and funders Action for M.E., the ME Association, ME Research UK, and a private donor, are delighted to announce the release of the Summary Report on the Establishment Phase of the UK ME/CFS Biobank (2011-2014) (read the report).
UK ME/CFS Biobank has been developed as a research resource for scientists at the London School of Hygiene & Tropical Medicine and for the international community of researchers interested in conducting ethical and progressive research on ME/CFS.
The pilot funding from the three charities and the private donor has enabled the Biobank to become established, and has led directly to a successful application for a £1 million research grant from the U.S. National Institutes of Health, which will fund the project through to mid-2016.
As of November 2014, the Biobank held approximately 16,000 samples from over 350 participants (funded by all sources). Our hope is that these samples will contribute significantly to improved diagnosis and treatment for the many people around the world with ME/CFS. It should be ready to consider applications from researchers worldwide seeking to utilise its samples and data, subject to available funding, in 2015.
Feedback from people with ME/CFS, enrolled participants, their families, and fellow researchers has been universally positive throughout the course of the project. We would like to express our sincerest appreciation to the many people – both those with and without ME/CFS – who have so generously contributed to the Biobank by donating their time, resources, and precious energy to participate in the project.
The UK ME/CFS Biobank is a valuable resource, but long-term sustainability will be dependent on securing continuous financial support for this vital infrastructure to allow it to reach its full potential. This will involve the expansion of participant recruitment with long-term follow-up, and the processing and analysis of samples and data to test a range of study hypotheses, as well as the ongoing sharing of samples and data with the research community.
To learn more about the project, including how to participate and how you can help ensure the sustainability of the UK ME/CFS Biobank, please visit CURE-ME ME/CFS.
Quote from charity funders
“The Biobank is a much-needed resource, adding capacity and creating value for the research community and ultimately for people with M.E. Working collaboratively, we will increase efficiency and effectiveness which is critical if we are to achieve our vision of a world without M.E.” Sonya Chowdhury, Chief Executive, Action for M.E.
“ME Research UK is delighted to see the Biobank established, and is proud to have been one of the co-funders. The whole CURE-ME research team deserve congratulations on this achievement. The UK now has a unique ME/CFS research resource linking bio-specimens with clinical data, and we look forward to seeing it made available to scientific researchers across the world.” Dr. Neil Abbot, Research & Operations Director, ME Research UK
“The ME Association is delighted to have been involved in planning, developing and co-funding the UK ME/CFS Biobank. This is a vital new piece of research infrastructure that has achieved all it set out to do in the first years of operation. Special thanks must go to everyone who has donated blood samples and to our highly dedicated staff at the London School of Hygiene and Tropical Medicine and the University College London / Royal Free Hospital BioBank. We now look forward to expanding patient recruitment and opening up the biobank in 2015 to researchers who want to make use of the blood samples.” Dr. Charles Shepherd, Hon Medical Adviser, ME Association

DUUH ? REALLY ? YOU DON’T SAY !!

images-7

 

 

Daily Telegraph’s Sarah Knapton, Science Editor, 27 Feb 2015 

Patients suffering from chronic fatigue syndrome show distinct changes in their immune system, scientists have shown for the first time.

Researchers say the immune changes represent ‘the first robust physical evidence’ that ME is a biological illness rather than a psychological disorder.
Until now doctors have only been able to diagnose the condition on reported symptoms alone, a problem which has led some to dismiss the illness.
But now Columbia University has found that there are specific patterns in 51 immune biomarkers for people with ME. The test also shows differences for short and long term sufferers.
Researchers are hopeful that at an immune test could help improve diagnosis of the disabling disorder in which symptoms range from extreme fatigue and difficulty concentrating to headaches and muscle pain.
Related Articles
Porridge could be key to a long and healthy life, says Harvard University
Harvard university: ‘Porridge the key to a long life’ 05 Jan 2015
Fear of exercise exacerbates chronic fatigue syndrome, say researchers 14 Jan 2015
Chronic fatigue syndrome: the symptoms 14 Jan 2015
Feeling cold can be catching 12 Jan 2015
£10 to trade shares and no charge to buy & sell funds Telegraph Investor
The study looked at the immune systems of 298 patients suffering from chronic fatigue syndrome.
People who had the condition for three years or less had increased amounts of immune molecules called cytokines. They had particularly high concentrations of a molecule called interferon gamma which has been linked to the fatigue people feel following a viral infection like flu.
“We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn’t psychological,” said Dr Mady Hornig, director of translational research at the Center for Infection and Immunity at Columbia University.
“Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers.”
Crucially there are already drugs on the market which can dampen levels of cytokines and potentially help sufferers, although researchers said their findings would need to be replicated before clinical trials could take place.
The study supports previous suggestions that the condition may be triggered by viruses. It is thought that the immune system may simply fail to switch off.
“It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop,” says Dr. Hornig.
The condition, once dismissed as ‘Yuppie Flu’, is now a recognised illness which affects around 250,000 people in Britain.
Sufferers report extreme fatigue, joint pain, headaches and memory problems, but doctors still do not know the cause or how to cure it.
Ian Lipkin, Professor of Epidemiology at Columbira added: “This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease.”
Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.
Most cases of CFS are mild or moderate but some people experience symptoms which are so severe they struggle to do even simple tasks like brushing teeth.
Previously experts have suggested it could be triggered by a viral infection; problems with the immune system; a hormonal imbalance or an emotional trauma.
The findings were welcomed by charities who said it proved that ME was a biological disease.
“We welcome hugely respected scientists such as Dr Mady Hornig and Prof Ian Lipkin contributing to the growing momentum of M.E. research with their interesting and potentially exciting findings,” said Sonya Chowdhury, CEO, Action for ME.
“This peer-reviewed evidence that M.E. has a potentially identifiable biomarker could have significant implications for quicker diagnosis and improved treatments for this neglected patient group.
“As the team itself highlights, these findings are only preliminary. There is much more work to be done and we eagerly await replication of these results as soon as possible.”
However some experts were more sceptical about the findings.
Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, said: “Whilst this finding that some patients with CFS/ME have an immune abnormality is potentially interesting, we should treat it with great caution.
“Everyone who has worked clinically with patients with CFS/ME knows this is a real illness; this study neither proves nor disproves that observation.”
Prof Paul Morgan, Professor of Inflammation, Skin and Joint Disease, Institute of Infection and Immunity, Cardiff University, added: A biomarker of CFS has long been sought as a means of adding substance to a difficult and controversial clinical diagnosis. Inflammatory cytokine markers have been described but have failed to replicate.
“Independent verification in larger sample sets is an essential first step, particularly in an area so heavily littered with blind alleys.”
The research was published in the journal Science Advances.

Yet another obstacle for ME!

images-1I have been investigated by the Advertising Standards Authority (ASA) and The Committee of Advertising Practice (CAP) following a Complaint lodged by one of our Members.

The Member, (now unsubscribed), was upset by my phrase “best wishes for your journey towards recovery” as she felt that I was assuming that she was in recovery but, in fact, felt she was not “recovering or anywhere near it.”  This led her to lodge the Complaint which brought me to the attention of the ASA and CAP.

It seems I have been infringing the UK Code of Non-Broadcast Advertising, Sales Promotions and Direct Marketing, notably the Rule which states that “Mentioning any medical condition in relation to a product, is likely to imply that the product can treat that condition”.

All Food Supplement claims re health and nutrition are strictly regulated by very specific EU Regulations and the field is a quagmire!

The EU Regulations, at present, regarding Fish Oils is particularly negative:  “because on the basis of the scientific evidence assessed, claimed effect for this food supplement has not been substantiated.”

Despite vehemently fighting our corner, I’ve had to comply by removing all references to ME from my website other than mentioning that the purchasing of Vegepa, via The Private Vegepa Club, aka The Vegepa for ME Scheme, contributes towards crucial fund raising for Biomedical Research into ME.

The ASA and CAP have now come to an Informal Resolution and I have amended copy on my website accordingly.

Because of this, you may find that references to the supplement and the medical condition are missing in places where you might, logically, expect to find them!

Because of this, I managed to secure permission to sell Vegepa to anyone and I am no longer restricted to any one particular condition, which may, ironically, increase our donations to ME Research as, hopefully, our numbers will swell!

 

Stay of Execution!

IMG_1076I’ve have just had to borrow a very large amount of money in order to buy up a year’s worth of Vegepa so that I can keep my prices as they are for a while longer and not have to leave my Members high and dry, in a position where they cannot afford to continue taking Vegepa.

When these boxes are sold, if the manufacturer will no longer give us preferential rates, I will have no option but to either put up my prices or to close down Vegepa Club for good.

As you can imagine, this will be heartbreaking.  Anyway, I will keep you all informed, well in advance.

This is my spare room now!  Oh well, less hoovering!

My Mantra

florida-lily-pads-amy-warnke

God grant me SERENITY

To accept what I cannot change,

STRENGTH to change what I can

and WISDOM to know the difference.

The Prayer for Serenity – Reinhold Neibuhr, 1892–1971, American Theologian

 

I’m not at all religious  but this little prayer helps me every single day…  I came across it years ago when a total stranger in a post office queue saw what must have been my care-worn, worried and saddened Carer’s face  She silently fished a scruffy bit of paper out of her wallet and lovingly handed it to me.  It made perfect  sense to me immediately and has always been my guiding light.  Ever since, I too carry copies in my wallet for when I can pass on that good deed!