BUSINESS AS USUAL

Featured

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

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

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

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

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

BUSINESS AS USUAL!!

Dear Members,

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

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

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

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

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

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

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

Lynne

MEA Newsletter

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

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

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

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

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

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

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

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

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

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

ME Association Medical adviser, Dr Charles Shepherd, said: 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr Karl Morten said: 

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

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

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

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

Dr Shepherd said: 

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

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

Dr Geraghty said: 

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

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

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

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

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

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

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

The ME Association Ramsay Research Fund

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

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

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

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


ME Association Registered Charity Number 801279

New Product released!!!

NOW THIS IS REALLY BIG NEWS!!!

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

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

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

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

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

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

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

Ooh..we’ve gone all e-commerce!!

Featured

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

At long last, Vegepa Club has reached adulthood!

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

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

choices, choices….!

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

New!!! Omegaflex

Featured

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

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

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

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

Important News!

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

At long last, Vegepa Club has reached adulthood!



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

Order and pay in one fell swoop!!!

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

choices, choices….!

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

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

NOW THIS IS REALLY BIG NEWS!!!

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

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

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

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

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

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

And here I go again ….

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

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

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

Other medical conditions may require lower doses.

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

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

Fat lot of help!!

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

So far we’ve donated about £60,000!!!

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

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

 

A Brief Refresher on Doses

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

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


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


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


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

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


Kind regards,

Lynne

Great news from Sweden!

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

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

V x

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

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

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

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

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

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

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

Dr Charles Shepherd

Hon Medical Adviser, MEA

More info

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

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

The ME Biobank

https://cureme.lshtm.ac.uk

Privacy Policy changes

We’re committed to your privacy!

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

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

(double yawn!)

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

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

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

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

(triple yawn!)

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

https://www.vegepaclub.com/privacy/ 

and is effective from 25th May, 2018.

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


Ready to place your next order??

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



Don’t forget, your password is melon



You can now see our amazing prices at a glance before you start ordering!
Click here


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

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

8 capsules every single day without a break

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

(Other medical conditions require lower doses).
 

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

You need have no worries on that score!!

Current stocks of Vegepa are valid until autumn 2020!


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


Wishing you much healthier times just around the corner,

Lynne
(& Ollie The Dog/Chief Assistant)

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

Are you intolerant to milk?

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

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

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

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

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

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

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

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

A Very Common Question

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

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

MA

 

Hi M,
It really doesn’t matter.

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

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

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

The 2 VERY IMPORTANT points are:-


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


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

Hope this helps.

All the best,

An oh so typical teenage story 😔

Dear Lynne,

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

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

The Benefits of Taking 8 Vegepa for ME/CFS

Number 8

Hi Lynne

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

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

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

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

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

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

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

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

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

Best Regards,

Angela

xx

November Coughs and Colds

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

Hi Helen,

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

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

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

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

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

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

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

Dear Lynne,

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

Very best wishes,
Helen

Chemical signature for CFS identified!

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

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

Wednesday, August 31, 2016

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

Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome

By Scott Lafee

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Researchers Identify Characteristic Chemical Signature for CFS!

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

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

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

By Scott Lafee

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

metabolomics

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

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

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

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

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

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

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

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

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

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

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

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

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

THANK YOU TESCO!

YES INDEED – EVERY LITTLE BIT DOES HELP!

TESCO

 

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

 

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

FullSizeRender

IMG_1348

 

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

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

I rest my case.

ME and UNI

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

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

Dizziness in ME

Featured

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

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

Our £3 IKEA shower stool

Our £3 IKEA shower stool

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

A Refresher Course on Vegepa’s Unique Properties

Featured

independently-batch-tested v2-01Vegepa

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

anchovies-01Key features

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

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

► Improves cognitive function and supports cardiovascular health

► Supports energy levels in people with ME

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

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

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

► Sustainable high concentration EPA fish oil from wild Pacific anchovies

► Easy-to-swallow capsules

► Contains no artificial colours, flavours or preservatives

evening-primroseDirections

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

pacific-01Indications

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

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

packaging-02

UK ME/CFS Biobank

Featured

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

DUUH ? REALLY ? YOU DON’T SAY !!

images-7

 

 

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

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

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

Yet another obstacle for ME!

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

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

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

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

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

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

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

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

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

 

Stay of Execution!

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

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

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

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

My Mantra

florida-lily-pads-amy-warnke

God grant me SERENITY

To accept what I cannot change,

STRENGTH to change what I can

and WISDOM to know the difference.

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

 

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