“UNREST” a magnificent ME film in UK from 20th October

Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.

Synopsis

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly.  Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

Unrest world-premiered January in the documentary competition at the 2017 Sundance Film Festival, where it won a Special Jury Prize for editing. It has since screened at SxSW, CPH:DOX, HotDocs, River Run (Audience Award for Best Documentary Feature), the Nashville Film Festival (Grand Jury Award for Best Documentary Feature), among Sheffield Doc/Fest (Illuminate Award). It also has a companion VR piece which premiered at Tribeca and won the Jury Award for best VR at Sheffield/DocFest.

https://www.unrest.film  (including a trailer)

 

Petition succeeds with your help!

NICE decides to Fully Update its guideline on ME/CFS! 

Following the stakeholder consultation, NICE have   announced they will now commence a FULL REVIEW of the guideline for ME/CFS, effectively overturning previous expert advice not to update it.

The following has been taken from the NICE website, and was shared across social media:

Sir Andrew Dillon, NICE chief executive, said:

“The strong message from stakeholders was that the continuing debate about the causes of this condition and the best approach to treatment argued for a review of the current guideline.”

“We will now recruit a guideline committee which will include people with the condition and their carers, the healthcare professionals who treat them and the organisations which commission that treatment. As with all the guidance we produce, we will also ensure that stakeholders have the opportunity to provide evidence and insights throughout the development of the guideline.”

‘CFS/ME is a relatively common condition affecting around 190,000 people in the UK. It comprises a range of symptoms that includes tiredness, headaches, sleep disturbances, difficulties concentrating and muscle pain.’

‘It can cause prolonged illness and disability and although some people have relatively mild symptoms and can still manage daily activities with additional rest, others have a serious illness that severely affects their everyday lives and may be housebound. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day.’

‘Further details about the review, including a scope outlining what it will cover and information about recruitment to the guideline committee, will be published on the NICE website as they become available.’

Surveillance decision

‘We will plan a full update with a modified scope of the guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (NICE guideline CG53).

Reason for the decision

Assessing the evidence

‘Initial assessment of the evidence against the guideline scope indicated that there was no clear signal that the identified new evidence would result in changes to the recommendations (see appendix A: pre-consultation summary of evidence from surveillance).

‘Following a stakeholder consultation on the proposal to not update the guideline, broader issues with the guideline were highlighted that called into question the guideline scope and its current relevance.

‘After further consideration of information from stakeholders including new evidence (see appendix B: summary of evidence highlighted to NICE during consultation, and appendix C: stakeholder consultation comments table) alongside the evidence identified through the surveillance review, NICE has decided to fully update the guideline with a modified scope.

Equalities

‘No equalities issues were identified during the surveillance process.

Overall decision

‘After considering all the evidence and views of topic experts, we decided that a full update with modified scope is necessary for this guideline.

‘See how we made the decision for further information.

Themes from stakeholder comments

‘Several themes emerged from the comments received at consultation which are detailed below. Stakeholders highlighted concerns with the existing guideline related to diagnosis, and interventions for treatment and management. Additionally, stakeholders raised issues around service delivery in respect to variation in practice, definitions and particular sub-groups that the current guideline does not differentiate between.’

Definitions and aetiology
Aetiology is outside the current scope. However many stakeholders raised the issue in respect to its impact on diagnosis and treatment.
Interventions recommended in the guideline are based on the biopsychosocial model. Stakeholders raised that since 2007, much has changed with respect to biomedical knowledge. Biological models based on measurable abnormalities may need greater consideration.
Newer terms for the disease are proposed e.g. US Institute of Medicine 2015 propose ‘systemic exertion intolerance disease’ (SEID) whilst other stakeholders advise that myalgic encephalomyelitis should be the preferred term.
Severe ME is not well covered in the guideline and can cause profound issues. Some stakeholders indicated that parents of children with severe ME sometimes find that false allegations of child abuse are made against them due to poor understanding of symptoms, care and treatment by healthcare professionals and schools.
Diagnosis
Oxford criteria (used to recruit to many studies included in the guideline) and NICE criteria are too broad.
Newer diagnostic guidelines from the US Institute of Medicine (2015) and International Consensus Criteria (2011) are different from NICE criteria. Specific paediatric criteria have also recently been proposed.
Late diagnosis is an issue.
Concerns have been expressed over misdiagnosis and overlap with other conditions e.g. pernicious anemia, Ehlers-Danlos syndrome, and Postural Tachycardia Syndrome.
Consideration of new research on metabolomics and biomarkers may be warranted.
Implementation, and information and support needs
There is variation in primary care management, and there is evidence of unequal access to specialist services.
Stakeholders noted that NICE’s evidence reviews are not up to date, therefore patients are not receiving the full picture on recommended treatments (such as studies that have shown inefficacy of cognitive behavioural therapy [CBT] or harms of graded exercise therapy [GET]), nor being told about alternative treatments, which may affect informed consent.
Greater support for GPs (many of whom feel ill-equipped in this respect) is needed to help with diagnosis, to provide accurate information (for example evolving evidence on risk and benefit of treatments), and to consider what an ‘individualised management plan’ might look like in practice.
Treatment
General
A large volume of new evidence since 2007 needs to be incorporated.
A separate section for children within the guideline should be considered.
CBT and GET
Against CBT and/or GET
The US Centers for Disease Control and Prevention have dropped CBT and GET from their list of recommended treatments for CFS/ME.
Evidence was cited of harms of GET, and pacing should be considered as an option.
Key trials (particularly PACE [Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation], but also Cochrane reviews of CBT and GET) have been criticised for inflating the efficacy of interventions. Issues include that some studies only require fatigue in the case definition, which may incorporate other fatiguing conditions with the potential to complicate results.
There may be distinctions between people with CFS and with ME that should be accounted for.
Patient surveys appear to contradict findings from randomised controlled trials and systematic reviews regarding the safety and efficacy of CBT, GET and pacing.

In favour of CBT and/or GET
Large randomised controlled trials such as PACE and GETSET, and Cochrane reviews, appear to support the guideline recommendations on CBT and GET.
A hospital department supplied data that patient reported outcome measures completed by patients receiving >18 sessions of CBT and/or GET improved 60% on the SF-36 (a patient-reported general health outcomes scale).
Other interventions
Additionally, stakeholders highlighted other interventions not currently covered in the guideline that NICE should consider. These included:

Structured exercise programmes, for example the Klimas programme.
Complementary and alternative therapies: co-enzyme Q10, magnesium supplementation, herbal medicine, acupuncture, the Perrin osteopathic treatment, gentle yoga/meditation and acupuncture/acupressure.
Pharmacological treatment: rintatolimod, rituximab and anakinra.
Faecal transplantation.’

You can read how NICE made this decision on their website. It very much looks as though stakeholder submissions and advocacy efforts won out.

Well done everyone who was able to take part and make a submission, and a special thank you to all who supported our petition calling for a full review of the guideline

SIGN THIS PETITION!! The lack of an effective policy for the treatment of ME

PLEASE PLEASE SIGN THIS PETITION AND AS YOUR FAMILY AND FRIENDS TO DO SO TOO!!

Debate in Parliament

The lack of an effective policy for the treatment of ME

Myalgic Encephalomyelitis (ME) means “muscle pain plus inflammation of the brain/spinal cord”, a chronic neurological illness, but “the majority of patients presenting with symptoms of ME in the UK are still referred to psychotherapists for treatment” (Dr Ian Gibson). A policy review is overdue.

 

Sign this petition

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At 100,000 signatures, this petition will be considered for debate in Parliament

Petition: NICE guideline for ME is unfit for purpose…

Dear All
 
If you or your friends or relatives are affected by CFS/ME, please sign this petition.
This petition will close on Friday 21st July at 5pm.
 

Lynne

BBC Radio 4 – investigates claims re children with ME

Dear All,

In case you missed this excellent programme, here is the podcast link for you to listen to plus the transcript in case you prefer to read that.

Children with ME

File on 4 investigates claims that parents whose children suffer from a crippling illness that leaves them sick and permanently exhausted have been falsely accused of child abuse.

Parents of children with Myalgic Encephalomyelitis (ME) reveal how they have been investigated and referred for child protection measures on suspicion of a rare form of child abuse known as Fabricated or Induced Illness (FII).

FII, also sometimes known as Munchausen’s Syndrome by Proxy, is extremely rare and occurs when a parent or carer exaggerates or deliberately causes the symptoms of a child’s illness. One charity says FII is being used inappropriately by education and health professionals. We talk to families who claim the stress caused by this accusation has made their children worse.

With doctors divided over the best way to treat children, what’s the impact on families?

Reporter: Matthew Hill
Producer: Nicola Dowling

http://www.bbc.co.uk/programmes/b08vyly5


TRANSCRIPT OF “FILE ON 4” – “CHILDREN WITH ME”

http://news.bbc.co.uk/1/shared/bsp/hi/pdfs/27_06_17_fo4_childrenwithme.pdf

 

Please note….

I’m sorry for any inconvenience that this may cause you

but I’m firmly closing the office from 

Saturday 3rd – Monday 12th June.

During these dates, please place your order
(and pay via BACS, SWIFT or Paypal).

I’ll open the door again to continue running Vegepa Club
from 12th June onwards,
to process all orders as fast as I physically can!

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.

Cannes ’17: Scottish film “Wild Horses” about ME

Cannes ’17: Scottish student film Wild Horses about ME

Meet the Scottish student going to Cannes

By Duarte Garrido, Entertainment Reporter

A Scottish student’s short film has been picked to compete for an emerging talent prize at the Cannes International Film Festival.

Rory Alexander Stewart, a 27-year-old graduate from the National Film And Television School, told Sky News he was still coming to grips with the “unlikely” news.

“I was very surprised. It was unbelievable to be honest. It’s only really hitting me now, it’s just so unlikely,” he said.

Wild Horses, a 26 minute film about a teenage girl struggling with a largely unknown disease, has been picked out of 2,600 others for the festival’s Cinefondation category.

Wild Horses
The film follows a teenage girl who has myalgic encephalopathy (ME) or chronic fatigue syndrome

“The first thing that attracted me to this in the first place is that this disease is very hard to externalise, and I think that is an interesting challenge,” Stewart said.

“How do you put that on screen? How do you make people feel the same things that the character is feeling?”

Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis (ME), is a disease which causes persistent fatigue and affects everyday life irrespective of sleep or rest.

preview image
Watch a clip for Cannes short Wild Horses

Stewart, who has a close friend who suffers from ME, wrote and directed the short film about a girl who, housebound by the disease and writing a school paper about wild horses, decides to run away from home in search of one.

“She is a very silly character. This is a comedy in some degree,” Stewart told Sky News.

“She is a very literal person, she feels like the way to get to the root of this story she’s trying to write in the film is just to go and meet a horse, like that is just going to open up the world to her, which is obviously a little bit simplistic.”

:: Cannes 2017: Politics, TV and Adam Sandler

Wild Horses was made by a group of students, but stars professional actors Emma Curtis and Emma Cater.

Wild Horses
The short film was one of 16 picked from 2,600 entries for the festival’s emerging talent category

“We did casting with a great agent called Leanne Flinn and we saw a lot of young women and a lot of women for the role of the mother but they were just standouts.

“And they have a real chemistry with each other which is very important,” he explained.

The Cinefondation prize is now in its 20th year, and celebrates emerging talent from film school around the world.

Stewart has previously won a BAFTA New Talent Writer Award for another short titled Liar.

He has also been awarded the documentary prizes at the Smalls Film Festival and London Short Film Festival for The Port.

But Wild Horses has catapulted his career abroad, and will see the Scottish student walk the red carpet at the Croisette in May.

“I think you have to wear a tuxedo,” Stewart said.

“So I suppose I’ll be renting one soon enough, hopefully.”

The Cannes International Film Festival runs from the 17-28 May.

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

Vegepa Newsletter Winter 2016

Vegepa Club

Simply the most affordable Vegepa available anywhere
whilst donating to crucial Biomedical Research into ME/CFS

Dear Members,

Wishing you a wonderful winter break, however you celebrate it,
and may you, your family and friends enjoy a much Healthier and Happier 2017.

Thank you for your support throughout 2016 and for helping Vegepa Club to raise almost £55,000, since we started out, which has really made a very tangible difference to crucial Biomedical Research into ME. (see website for details).

I’m so glad you’ve also personally benefitted by ordering through Vegepa Club
at the lowest possible prices anywhere!

Don’t forget the minimum recommended Vegepa dose for ME is 


8 capsules every single day (Christmas too!)

Other medical conditions may require lower doses (again see website for details).

I’ve been busy stockpiling all year so the good news is that my Vegepa prices
will NOT increase during 2017 (though other’s will), – and that’s a promise!

With our very warmest wishes,

Lynne (and Ollie)

 

Donations Update

img_3564

 

 

 

 

And I couldn’t have done it without YOU!

Every November, I add up all the donations which our Members have generously made throughout the past year and I match them.

This year’s donation has had a great impact on The ME Association as they’ve sent us this Thank You.

Hello Lynne and Vegepa Club Members,

Thank you very much for your very generous donation, on behalf of all your Vegepa Club Members both in the UK and abroad, to the work of The ME Association.

It will be used to further our essential work – in campaigning, in support for people with ME and in funding vital biomedical research. There’s still so much more to do and we won’t stop until a cure is found.

One day we will understand ME and because of your help, that day will now come sooner.

You and your Vegepa Club numbers are just fab.

Your donation means that we have achieved over 25% of target of our £50,000 Christmas Appeal in just 12 days!!

Click on the photo below to read all about our Appeal.

Best wishes

Tony

Tony Britton, Public Relations and Communications Executive, The ME Association

http://www.meassociation.org.uk/how-you-can-help/make-me-better/

Our Make ME Better campaign aims to raise £50,000 to fund scientific research which we hope could lead to a breakthrough in diagnosis and treatment of ME/CFS.

Led by Dr Karl Morten, scientists from the University of Oxford and Newcastle University wish to spend 12 months analysing nearly 300 blood samples, looking at metabolomics – chemical clues that are left behind after changes in cells. Put simply, they’re on the hunt for a smoking gun.

The British research will pick up the gauntlet of the groundbreaking Naviaux study released by the University of California earlier this year, which suggested that ME/CFS could be the body going into a state of semi-hibernation.

Dr Morten will be working alongside Dr James McCullagh, Associate Professor in Mass Spectrometry at the University of Oxford, and Professor Julia Newton, Dean for Clinical Medicine at Newcastle University.

Prof James McCullaghMany of the blood samples will come from the ME/CFS Biobank – the first significant time they have been used by external researchers – and will be compared to those from a control group.

 

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

 

UK Shipping Charges

postmanPat_1496894c

Dear UK Members,

I’m afraid I can no longer afford to personally subsidise the cost of shipping parcels to you as I’ve been happy to do for over 4 years.

Vegepa Club was far smaller then but, over time, with far more orders, Royal Mail’s postal increases, parcel insurance, packaging materials, leaflet inserts, time, petrol etc, it’s all become too expensive for me – however much I’d love to be able to continue.

Up til now you’ve paid a percentage but I now have to pass the total cost onto you.

You’ll find that now, when you place an order, (UK ONLY) you have the choice of Standard or Signed For and you’ll be told how much the shipping will be depending on the size of your order.

Shipping is included in the final total of your order.

The good news is that I’ll be making an automatic donation to our crucial Biomedical Research Fund for every order received.

I hope you’ll understand that this is usual business practice and, more importantly, for a pound or so more each time you order, that it won’t interfere with your Vegepa intake.

P.S. If you place a larger order than usual, say 3 months’ supply in one go, you can save on your shipping costs (not to mention saving my time and energy)!

In fact, anything up to 24 boxes is charged at the same cheapest rate!!

June 2016

 

 

 

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

Government responds to “Invest more money into scientific research to find the cause of M.E./CFS”

House-of-Commons-logoDear LYNNE KERSH,

The Government has responded to the petition you set – “Invest more money into scientific research to find the cause of M.E./CFS”.

Government responded:

The Government supports research into CFS/ME through the MRC and the NIHR. High quality research applications are welcomed at any time.

The Government supports research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the Medical Research Council (MRC), which receives funding from the Department for Business, Innovation and Skills; and through the National Institute for Health Research (NIHR), which is funded by the Department of Health. Together the MRC and NIHR welcome high quality applications for research into all aspects of CFS/ME. These would include studies to investigate the biological causes of the condition, improve our understanding of the condition and the complex and diverse range of symptoms experienced, and evaluate treatments.

Research proposals in all areas compete for the funding available with awards made according to their scientific quality and importance to human health.

Research into CFS/ME is a current priority area for the MRC. It received very few high-quality proposals in the area it has implemented a number of initiatives to stimulate more research in this important area and to increase research capacity by bringing new researchers into the field and supporting multidisciplinary teams to tackle research challenges and build partnerships. A highlight notice which outlines research priorities identified by the research community, and where applications are encouraged, is currently in place and can be found on its website at: http://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfsme-highight-notice/

Department for Business, Innovation and Skills

Click this link to view the response online:

https://petition.parliament.uk/petitions/118175?reveal_response=yes

The Petitions Committee will take a look at this petition and its response. They can press the government for action and gather evidence. If this petition reaches 100,000 signatures, the Committee will consider it for a debate.

The Committee is made up of 11 MPs, from political parties in government and in opposition. It is entirely independent of the Government. Find out more about the Committee: https://petition.parliament.uk/help#petitions-committee

Thanks,
The Petitions team
UK Government and Parliament

PLEASE SIGN THIS CRUCIAL PETITION NOW!!!

 PLEASE SIGN THIS CRUCIAL PETITION NOW!!!

House-of-Commons-logo

At long last there is an online petition for
ME Research Funding
to finally be considered for debate
in the UK Parliament!

The deadline is 13th July but, so far,
only 12,556 have signed
out of the 100k signatures required,
so it’s looking un-achievable,
save a Vegepa Club miracle.

Let all Vegepa Club Members,
their friends and family
make it happen!!

https://petition.parliament.uk/petitions/118175

(It takes only 30 seconds to sign)


Petition:
Invest more money into scientific research
to find the cause of M.E./CFS
M.E./CFS is a debilitating autoimmune disease currently affecting 250,000 people in the UK. Many sufferers are unable to work or care for themselves, and 25% of M.E. patients are bedbound. Most M.E. sufferers are on ESA or disability benefits, causing a significant economic burden.

Government responds to all petitions that get more than 10,000 signatures
At 100,000 signatures, this petition will be considered for debate in Parliament

Share this petition with everyone you know

by email, Twitter, Facebook, WhatsApp, Messenger, etc.etc.

Created bySimone de Monerri
Deadline13 July 2016All petitions run for 6 months

New UK Shipping Charges

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postmanPat_1496894c

Dear UK Members,

I’m afraid I can no longer afford to personally subsidise the cost of shipping parcels to you as I’ve been happy to do for over 4 years.

Vegepa Club was far smaller then but, over time, what with far more orders, Royal Mail’s postal increases, parcel insurance, packaging materials, leaflet inserts, time, petrol etc, it’s all become too expensive for me – however much I’d love to be able to continue.

Up til now you’ve paid a percentage but I now have to pass the total cost onto you.

You’ll find that now, when you place an order, (UK ONLY) you have the choice of Standard or Signed For and you’ll be told how much the shipping will be and it’ll be included in the total price of your order.

The good news is that I’ll be making an automatic donation to our crucial Biomedical Research Fund for every order received.

P.S. If you place a larger order than usual, say 3 months’ supply in one go, you can save on your shipping costs (not to mention saving my time, costs and energy)!  In fact, anything up to 24 boxes are all charged at the same, cheapest rate!!

June 2016

DEAR MEMBERS, I’M TAKING A SHORT BREATHER

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I’m sorry for any inconvenience this may cause you but I’m taking a much needed break from 1st – 10th June.

Although I won’t be in the office, please place your orders as usual and I’ll process them from 11th June onwards – as fast as I physically can!

I’M GIVING YOU AS MUCH NOTICE AS POSSIBLE SO THAT ANY URGENT ORDERS CAN BE PLACED BEFORE I FIRMLY BOLT THE OFFICE DOOR!

Lynne

 

 

SYSTEMIC LUPUS AND VEGEPA

LupusSymptoms

 

 

 

 

 

 

 

 

Dear Lynne,

Perhaps you could include Systemic Lupus in your list of things that Vegepa treats.  Having increased my dose to 5 capsules per day, my Lupus is now no longer active, which is amazing, especially as I was diagnosed in 2000!
I started taking Vegepa when the Natural Therapy Clinic, where I still work, was stocking them in 2005 and I’ve never stopped taking them since. The practice no longer stocks Vegepa since downsizing in recent years, which is why I order from you, knowing that each order helps in ME research. I order what I can afford (could have done with ordering more but never mind) and there will be other orders to follow.
I have several friends who have ME and fibromyalgia and they are also taking Vegepa, as a result of my recommendation. I’ve done my best to get them to increase the dosage but there’s only so much nagging you can do!

8 capsules a day seems to be the dosage for ME but 5 Vegepa per day has really put me in remission of my Lupus. My nurse specialist says to keep doing what I’m doing. They are very pleased with me and I’ve been able to come off steroid tablets too.
….
HS

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!!

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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.

A Big Thank-You from the ME Association

VEGEPA CLUB THANKS copy

Members of the Vegepa Club who have very willingly donated “a little bit extra” this year will be delighted to know that Lynne has sent us a terrific donation from you all that totals £800.
 
This has gone straight into our research fund. 
 
This year, the fund has paid researchers to investigate the mechanisms that cause exercise-induced fatigue in M.E., check out what’s going wrong in the mitochondria (the tiny power packs in every cell) of people with this horrid illness and studying some pretty drastic faults in the immune system.
 
In addition, our medical adviser Dr Charles Shepherd took over the chair of the UK ME/CFS Biobank team at the London School for Hygiene and Tropical Medicine – which is where your generous donation went last year. Thousands of blood samples there will be available to serious researchers from round the world next year.
 
And every penny that goes to our research fund is spent looking for the causes of M.E. that, hopefully, will one day lead to a cure. All the costs of actually running the research fund are met by ME Association general funds.
Tony Britton
Publicity Manager, ME Association

Happy Holidays

Christmas snow 2

Wishing you a wonderful winter break,
however you celebrate it,
and may you, your family and friends
enjoy a much Healthier and Happier 2016

Thank you for your support throughout 2015 and for helping Vegepa Club to raise over £50,000, since we started out,
which has really made a difference to crucial Biomedical Research into ME.

I’m so glad you’ve also benefitted by ordering through Vegepa Club
at the lowest possible prices anywhere!

Don’t forget the recommended Vegepa dose for ME is 

8 capsules every single day (Christmas too!)
(other medical conditions require lower doses).

I’m looking forward to another busy year ahead and,
although some UK shipping prices may have to rise,
the basic price of my Vegepa will not – that’s a promise!

P1150093

Lynne (and Ollie)

Christmas Sale!

DXMAS PROMO

Once again I’m running a Christmas Sale from
Monday, 16th November until 4pm on Wednesday, 16th December

and it’ll be one of the best Christmas presents you’ll receive this year!

You’ll be able to get your Vegepa supplies
a further 10% cheaper than our usual, amazing prices
and still be donating to
crucial Biomedical Research into ME.
(Yep! you read that correctly!)

To date we’ve raised over £49,000!


THE SALE!
(offer only applies to these sizes and only to Vegepa):-
Order 9 boxes of Vegepa and you’ll receive 10
Order 18 boxes of Vegepa and you’ll receive 20
Order 27 boxes of Vegepa and you’ll receive 30
Order 36 boxes of Vegepa and you’ll receive 40
Order 45 boxes of Vegepa and you’ll receive 50
Order 54 boxes of Vegepa and you’ll receive 60


Of course you can order other quantities but only the multiples of 9,

listed above, offer a further 10% discount
on our already unbeatable prices 

(and make packaging far easier for me).


You can order as many times as you like until 16th Dec.


My current Vegepa stock’s expiry date is late 2018!


Remember that our prices even include shipping!


If you’ve ordered from our website before, you don’t have to Register again.

Just click on any of these buttons,

BUY NOW GREEN BUTTON

enter your password (sent to you when you join Vegepa Club) and away you go!


PAYMENT
You’ll still make your payment off the website, as you’ve always done in the past,
either by PayPal,
(but please do follow my easy instructions on how to avoid UK PayPal fees
http://www.vegepaclub.com/payment-methods-2/

or by Bank Transfer (BACS) or by SWIFT (if you live outside the UK)


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I’ve added a new payment method for those of you who use mobile banking.

Read more about this simple payment method
and

how to register with your internet bank

Using your provider’s mobile banking or payments app, enter my mobile number


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Remember – you’ll still benefit by buying your Vegepa at the lowest possible price whilst donating to crucial Biomedical Research into ME
(currently we’re helping set up a unique ME BioBank).


Exciting - isn't it!

I still aim to offer the same excellent service
 of posting your parcel within 1 – 2 working days after receiving payment.


Everything you could possibly need to know is on our website
(even about my willing, if not able, assistant Ollie)!

2014 WINTER - 08


Join the clubOnly Members are able to order at my rock bottom prices
so tell your friends and family to visit the website so they too can
join the Vegepa Club,
learn all about ME, place an order and sign up for my occasional Newsletters.


Vegepa Club is free to absolutely anyone, anywhere in the world,
to buy this unique, patented, pharmaceutical-grade supplement
from Vegepa Club.

**Other medical conditions which benefit from Vegepa are:-

ADHD
Asperger’s Syndrome
Autistic Spectrum Disorders
Candida
Depression
Dyslexia
Dyspraxia
Fibromyalgia
OCD
Osteo-Arthritis
PMT
Poor Concentration
Recurring Infections & Viruses
Tourette’s
Unrefreshed Sleep
and for General Wellbeing.


Vegepa - 60 capsules per boxDon’t forget the recommended Vegepa dose for ME is 

8 capsules every single day (Christmas too!)

**(Other medical conditions may require lower doses).


images-4I look forward to processing your orders and wish you a wonderful Christmas
and a much Healthier and Happier 2016

Lynne

Our next Research Donation Day’s coming soon!

depositphotos_1589341-Pile-of-pound-coinsI’ll be making our next donation for crucial Biomedical Research into ME soon so if you can help boost the total it’d be most welcome indeed.
Just add whatever you can afford, however little, when you next order,or
send your donation by Paypal to home@vegepaclub.com
or
make a bank transfer
or
donate via Paym if you use a mobile banking app.

(see Ways To Pay for further details)
Many thanks x

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

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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

Summer Special Offer!

summer special offer

Order 9 boxes of Vegepa and I’ll send you 10!

(from today until 31st July!)

don-t-forget-reminder-words-yellow-sticky-notes-23724038You don’t have to join again if you’re already a Member (it’s extra work for both of us!).   

If you’re not yet a Member of Vegepa Club  JOIN NOW to take advantage of this sizzling offer!

Please, please, please take 8 Vegepa every single day and ensure your Vegepa intake is never interrupted.

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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.

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UK ME/CFS Biobank Established

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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

Gives us all hope!

rugby-itemno-7Hi Lynne
Hope you had a nice break. We missed you!!
Our son Dylan is doing really well at the moment and has even managed to start playing rugby again once a week, although he has to rest and pace himself.
He is also attending school again full time with 92% attendance and is achieving Excellence grades! He will be 14 in June and is now choosing his options for his GCSES which has been stressful as he wants to do sport, but hopefully we’ll get there!
At least we are going in the right direction!!
Thanks for all your hard work and support
Hamish, Amanda, and Dylan x

DUUH ? REALLY ? YOU DON’T SAY !!

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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
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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.

NB. ORDERS WILL BE CONFIRMED BUT NOT PROCESSED UNTIL FEBRUARY 26th!!

You may place your order and you will receive a confirmation email, but I won’t BE HERE TO process it until I return, as the office will be closed between

January 26th – February 26th, 2015

I promise to open up again, full of renewed vigour, and, if I have received your payment, I’ll send out your parcel straight away when I return.

HALF PRICE ORANGE CHEWABLES OFFER!!

SPECIAL HALF PRICE OFFER!!
Vegepa Chewables6 boxes of Vegepa Orange Chewables (worth £58) will be sent out, for the amazing, one-off, price of £29, to the first person to send me their name and address, via email to home@vegepaclub.com.
Payment via BACS or PayPal to the same email address.

Read about the Orange flavoured Vegepa Chewables here if you don’t already take them. They’re ideal for children who may be suffering from repeated infections at this time of year or for adults who have difficulty swallowing or for you if you fancy taking advantage of such a brilliant offer!

Our 2014 Christmas Promotion!

DXMAS PROMO

The best Christmas present you’ll receive this year!

What with renovating the new website, designing the online ordering system and sending out 1500 Newsletters (twice), not to mention the-day-to-day running of the Club, I’m exhausted so …..

I’ve decided to firmly bolt the office door for a month from

January 26th – February 26th, 2015

for a well deserved rest, but I promise to open up again, full of renewed vigour, straight after that.

As a thank you for your support, I’m running a Christmas Promotion

 from now until 5pm on December 17th 

(my final posting date for Christmas).

This means that not only will you be able to get your Vegepa supplies a further 10% cheaper than our usual, amazing prices, (Yep! you read correctly!)

but you can stock up for when the office is closed so my absence won’t affect your intake (most important for your treatment).

images-4

Here’s the offer (and it only applies to these sizes):-

Order   9 boxes of Vegepa and you’ll receive 10
Order 18 boxes of Vegepa and you’ll receive 20
Order 27 boxes of Vegepa and you’ll receive 30
Order 36 boxes of Vegepa and you’ll receive 40
Order 45 boxes of Vegepa and you’ll receive 50
Order 54 boxes of Vegepa and you’ll receive 60

Of course you can order any quantity you like (I know from my own experience of ME that not everyone can afford to buy big)  but (only) the order sizes listed above will bring you a further 10% discount on our already unbeatable prices (& make packaging far easier for me!).

images-3You’ll still benefit by buying Vegepa at the lowest possible price whilst donating to crucial Biomedical Research into ME.

I still aim to offer the same excellent service
 of posting your parcel within the next 1 – 2 working days after receiving your payment (except during Christmas itself, of course!)

Everything you could possibly need to know is here on our website (even about my assistant Ollie!)

images-2Only Members of Vegepa Club are able to see my rock bottom prices so tell your friends and family to visit the website so they too can join the Vegepa Club and sign up for our occasional Newsletters.

Vegepa Club is free to absolutely anyone, anywhere in the world, to buy this unique, clinical-grade supplement, (regardless of their medical condition), thus donating to biomedical research into ME.

Don’t forget the recommended Vegepa dose for ME is 8 capsules every single day (Christmas too!)
(Other medical conditions may require lower doses).

My current stock of Vegepa has an expiry date of September 2017!

images-4I look forward to receiving as many orders as you wish and wish you all
a wonderful Christmas and a far Healthier and Happier New Year!

Lynne

Order Avalanche

IMG_1077Orders are flying in thick and fast which makes me think that the old method of emails back and forth between us was putting a lot of people off buying through Vegepa Club.

I don’t really blame them as the process was hardly ME friendly to say the least!

I’m relieved to know that more people who would have ordered through Vegepa Club in the past can now do so with ease.

You’ll find it quicker and easier the next time you order as you’ll not have to re-Register.  Just click the Green ORDER NOW Button, select your country, pop in your password and away you go!

The whole ordering process should take less than 5 minutes (even with brainfog!)

Great News!

News!I’ve simplified our website and ordering process so that you can now use our fresh, new website (Vegepa Club!) and, as a Member, be able to see (at long last) the current prices as well as to place your order online. No more requesting to see the prices via one email and having to download and fill out your order form, save it to your computer and then email it back!

You’ll still make your payment off the site by either PayPal, BACS (or International Bank Transfer or Paypal if you’re outside the UK).

It’s been way too complicated in the past with lots of to-ing and fro-ing of emails between us which has hardly been ME friendly, to say the least!

Only Members of Vegepa Club! are able to see my prices and to order, thus complying with the restriction put upon me not to reveal my low, low prices openly, and yet, at the same time, making the ordering process so much easier and quicker for you and for me!

If you’re not a Member already, it’s easy to join Vegepa Club! – simply Join the Club and receive your password immediately so you can start ordering!

Breaking News!

5565913-breaking-news-headline-on-a-mock-up-newspaperI’ve simplified our website and ordering process so that you can now use our fresh, new website (Vegepa Club), as a Member, and be able (at long last) to see the current prices and place your order directly online.  No more mounds of emails going back and forth between us before you order!

You’ll still make your payment (off the site) by either PayPal, BACS (or International Bank Transfer or Paypal if you’re outside the UK).

It’s been way too complicated in the past with lots of to-ing and fro-ing of emails between us which has hardly been ME friendly, to say the least!

Only Members of Vegepa Club! are able to see my prices and to order, thus complying with the restricting condition put upon me to not reveal my low, low prices openly, and yet, at the same time, making the ordering process easier and faster for you and for me!

If you’re not a Member already, it’s easy to Join The Club! and receive your special Club Password immediately.

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