Open Medicine Foundation Receives Monster Donation For ME/CFS Discussion in ‘ME/CFS and FM News’ by Cort Johnson, Health rising Feb 2, 2018.

Patient Community Comes Through

Just a couple of months ago, Davis was so concerned that the OMF’s inability to secure funding for an NIH research center grant would impact donations that he publicly shared some of the head-shaking comments by the reviewers.

Boy was he wrong. On Giving Tuesday the OMF hoped for $150K and got $450K. They parlayed that and other donations to fund a $1.2 million Collaborative Research Center Ron Davis has built at Stanford. Financially that put them on par with the three NIH funded ME/CFS research centers for at least this year.

That money is going to fund Mark Davis’s enticing T-cell work, Mike Snyder’s huge genetics, genomic and immune family study and Ron Davis’s nano-needle and other work.

Pineapple Fund Steps In Again

Then a couple of weeks ago came a $1 million grant from the Pineapple Fund. Yesterday, impressed and probably shocked by the outpouring of thanks from the ME/CFS community – plus strong support from the research community – Pine just added in another $4 million to the $1 million donation.

Get this – with all the many worthy projects the Pineapple Fund is supporting – the sub Saharan water project, the healthcare for everyone project, the fighting aging project – Pine has chosen to give the OMF one of his biggest donations

Pine’s clearly got it about ME/CFS. He/she knows the disease affects a lot of people, is very serious, and yet gets very little resources. Pine was looking to make a difference in people’s lives – and ME/CFS is a great place to do that. If any disease is due for a big jump in support it’s ME/CFS.

“I had known about ME/CFS for a while, and I know it is a serious condition without much in the way of treatment or research. I’ve recently received letters of support from esteemed academics in the field strongly supporting OMF, and that helped me make the decision!”

From the Open Medicine Foundation announcement:

“Thank you, Pineapple Fund, for seeing beyond the cloak of invisibility laid upon this horrid illness and recognizing the desperate need. The hope this provides is palpable.” Liane B.

A Harbinger of the Future?

The huge Pineapple Fund donation is hopefully a harbinger of the future. It suggests – as we know – that when people really get it about ME/CFS they’re often moved to support it.

Our story is our greatest asset which is why sharing it is so critical. It’s a horrible story – millions of ill people ignored by the NIH and doctors for decades – but it’s also a moving one. Davis’s sharing it again and again at Stanford has elicited strong support there. It recently elicited strong support and interest at the University of Texas. The shares from the patients surely helped Pine support the research so generously. For people who really want to make a difference ME/CFS is a natural.

From the Open Medicine Foundation Announcement:

“Thank you for giving hope to people suffering with this disease. My son has had it for about 10 years, most of that time it was not recognized as an illness, let alone a serious one. A life full of exhaustion and pain may come to an end soon for him and other sufferers.” Ann W.

A New Problem

Now Ron Davis has a new problem. How to best spend all that money. The donation will quadruple the resources of the collaborative Research Institute and allow him to greatly accelerate his efforts. He’ll be able to hire researchers for multi-year stints – something he’s wanted to do for years.


All the work at Davis’s research center is exciting. I’m particularly intrigued to see if Davis can use the nano-needle to bring clarity to the energy problems in ME/CFS, uncover possible factors in the serum that are playing a role, develop a diagnostic test and test treatments. The Mark Davis T-cell study could determine what’s tweaking the immune system of ME/CFS patients. Then there’s the SJSU blood vessel study and the big Mike Snyder family study. Plus we’re waiting on the results of the severe patient study.

That’s a lot of work and a tremendous amount of movement for the Open Medicine Foundation in just five years. That movement is all the more remarkable given that neither Ron Davis nor Linda Tanenbaum had done anything like this before. Their creative approach to ME/CFS has been inspiring.

We shouldn’t expect that the $5 million is going to bring us the answer to ME/CFS – major diseases get hundreds of millions of dollars a year – but it’s going to jump start Ron Davis’s work – and who knows where that will lead…

2018 is starting off well



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

The National Institute for Health and Care Excellence (NICE) announced yesterday  they are  to begin a review of its 2010 guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) following a recent public consultation with patient and professional groups.

According to the ME Association in the UK, ‘they will now commence a FULL REVIEW of the guideline for ME/CFS, effectively overturning previous expert advice not to update it’.

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.”

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.  

To view the full article go to :

For the ME Association announcement go to

This is excellent news for people with ME/CFS both in the UK and in New Zealand. This review comes at a time when research is yielding promising results. Most relevant to the NICE guidelines review, is the research into the impact of exercise on the disease being conducted here at our own Massey University and in the US.  Our Ministry of Health very much looks to the UK for clinical models and guidelines, so we hope that this review will result in better outcomes for people diagnosed with ME/CFS.

Dr Charles Lapp on our radiowaves following warm reception in Wellington

Dr Lapp and WellMe
Sandra Forsyth, Vice Chair, Annie Judkins from Continuing Medical Education, Dr Charles Lapp, Catherine Kunz-Entwistle, Chair of WellMe after Dr Lapp’s lecture to first year registrars

Dr Lapp’s comprehensive lecture was very well received and WellMe is pleased it has been instrumental in educating the doctors who will provide the future care of its members.

To fully optimise the short time Dr Lapp would be in Wellington, WellMe worked tirelessly to arrange a lecture on ME/CFs/Fibromyalgia to first year Registrars.

Further to his tour, Sandra Forsyth, Vice Chair of WellMe has arranged for Dr Charles Lapp to be interviewed on Radio NZ’s Nine to Noon program on Tuesday 4th April.

Dr Lapp is a world renown ME/CFS/Fibromyalgia expert and a Director of the prestigious Hunter-Hopkins Centre a US clinic specialising in the diagnosis and treatment of ME/CFS and Fibromyalgia.

Dr Charles Lapp, Physician and Medical Director of Hunter Hopkins Centre in North Carolina, to visit Wellington as part of his Lecture Tour of New Zealand

Dr Charles Lapp, Physician and Medical Director of Hunter Hopkins Centre in North Carolina, USA will be undertaking a brief lecture tour of New Zealand between 26 March and 6 April.

Dr Charles Lapp
Dr Charles Lapp, Physician and Medical Director of Hunter  Hopkins Centre, Noth Carolina USA

Dr Lapp is recognised both nationally and internationally for his expertise in Myalgic Encephalopathy Society/Chronic Fatigue Syndrome, Fibromyalgia and related conditions.

Dr Lapp will be speaking in Dunedin, Wellington, Hamilton, Napier and Nelson with a final lecture in Auckland on 6 April.

In an order to maximise Dr Lapp’s time and expertise, WellMe, after much negotiation, has been able to arrange for a lecture to first year Registrars which will form part of their Continuing Medical Education programme.

WellMe is very pleased with this outcome, believing it vital that doctors who will be treating our members in the future have a better understanding of ME/CFS and Fibromyalgia.

The lecture will take place on Thursday, 30 March. Although this is a closed meeting, WellMe has been able to invite selected medical professionals and researchers with expertise in ME/CFS and Fibromyalgia.

A recording of a Dr Lapp lecture will be made available to our members in due course.

WellMe raising awareness of MECFS with the Hon Anette King

Sandra Forsyth and Annette King Waikanae 2 March

WellMe has a long term strategy for the raising of public awareness around ME/CFS and the advancement of better outcomes for our members.

As part of that strategy, and WellMe’s ongoing lobbying and active relationship building, Sandra Forsyth, Vice Chair and Eileen Brodigan, Special Projects Manager, attended a recent Labour Party meeting on health.

While there Sandra and Eileen discussed with Annette King our members inability to access the public health system and the financial devastation caused by chronic illness with further discussions to take place. 

Photo: Sandra Forsyth, Vice Chair of WellMe with Hon Annette King former Minister of Health, current opposition spokesperson for Health, member of the Select Committee on Health and MP for Rongotai 

Administrative Coordinator Hours

Hello Lovely Friends,

The Administrative Coordinator telephone office hours have been set as Monday, Tuesday, Thursday &  Friday from 10:30am to 2:00pm. You can contact me by phone on 0800 632 847. Any urgent requests are free to come outside of office hours.


As always, for questions and information you can get in touch with me via email, or if you are looking to book a time with Claire, you can contact her directly through her WellMe email address.

I look forward to seeing at you our 3 March Support Group meeting with Dr. Rosamund Vallings.

Jen Purvis
Administrative Coordinator

Study suggests some chronic fatigue syndrome patients may benefit from anti-herpesvirus drug treatment

Many experts believe that chronic fatigue syndrome (CFS) has several root causes including some viruses. Now, lead scientists Shara Pantry, Maria Medveczky and Peter Medveczky of the University of South Florida’s Morsani College of Medicine, along with the help of several collaborating scientists and clinicians, have published an article  in the Journal of Medical Virology suggesting that a common virus, Human Herpesvirus 6 (HHV-6), is the possible cause of some CFS cases.

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