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Photo by Stephen Wheeler on Unsplash

It’s exactly 17 years since I started the Vegepa Club, though it’s changed its name a few times as I expanded and eventually was permitted, by the manufacturer, to also sell to those who don’t have ME.

The Club started out in 2006 as The Vegepa For ME Scheme and everything was done via email as I couldn’t yet afford a website. I only sold “normal” Vegepa at first but Omegaflex and Echiomega came along later.

Over these years I’ve shed many a tear of pride and happiness when I’ve received wonderful letters of positive news and gratitude from Members. The messages are displayed on my office walls and, when I’m exhausted and desperate to get away from my desk, they spur me on for another hour or two!

Your good news and thanks are all I need to make my work worthwhile which makes the following tale all the more distasteful.

A few weeks ago a Member had to be politely reminded to make her payment which was more than a week overdue. She sent a very unapologetic email saying “There you go, I’ve done it now!” but then sent the wrong amount.

After another polite reminder (you can imagine how I just love to write these!), she added the postage which she’d “forgotten to pay” but withheld her original £5 donation. Along with the postage she sent another sarcastic email as if she was doing me a favour by paying the correct amount. Sadly I doubt our Research Fund will ever see her £5!

Shame to have a blot on my perfect landscape but one baddie out of 2,800 lovely Members isn’t bad going, is it!!

Marjan Blan

Lynne x

Dear Lynne,

The Big Give Christmas Challenge has now ended, and I think it is fair to say that I am still elated over the response we received – especially considering the current economic challenges faced by us all.

At the close of the event, we raised an amazing £20,359 but there will also be Gift Aid to add – all of which will be invested in ME research.

It does mean that the Pledge Pot was exhausted and so I am able to call upon you to fulfil your pledge of £2000 in full.

Once more, many thanks for your Pledge as it unlocked even more donations that we could have hoped.

Regards

Stewart Walker

Operations Director

‘ME Research UK wishes to thank all members of the Vegepa Club whose contributions helped us obtain Charity Champion funding and Match Funding which raised over £7700 in donations during The Big Give Christmas Challenge 2021.

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).

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

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© 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).

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, 

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 ?”

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.

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

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 quality. Not 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 white. Up is down. We 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

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:

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

We’re committed to your privacy!

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 we had – I bought a very cheap kid’s plastic stool from IKEA which really helped.

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 dizziness 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 is scary. I understand if you don’t have time to reply.
All the best from Linda