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

https://www.healthrising.org/forums/threads/open-medicine-foundation-receives-monster-donation-for-me-cfs.5829/#post-33284

https://www.healthrising.org/blog/2018/02/02/open-medicine-foundation-scores-monster-donation-mecfs/

 

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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 :

https://www.nice.org.uk/news/article/nice-to-begin-review-of-its-guidance-on-the-diagnosis-and-treatment-of-cfs-me

For the ME Association announcement go to

http://www.meassociation.org.uk/2017/09/breaking-news-nice-decides-to-fully-update-its-guideline-on-mecfs-20-september-2017/

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.

Open Medicine Foundation Community Symposium on the Molecular Basis of ME/CFS

On August 12, 2017, the Community Symposium on the Molecular Basis of ME/CFS convened ~300 researchers, clinicians, patients, caregivers, families, and advocates at Stanford University – and nearly 3000 more via livestream. Here’s what happened.

The symposium was chaired by genomics and biotech giant Dr. Ron Davis, Professor of Biochemistry and of Genetics at Stanford University. Ron is Director of: 1) the Stanford Genome Technology Center, 2) the Chronic Fatigue Syndrome Research Center at Stanford University, and 3) the Open Medicine Foundation Scientific Advisory Board. Recognized as one of the greatest living inventors, Ron is credited with helping to launch the field of recombinant DNA, facilitating the Human Genome Project, and creating technologies that have shaped modern genetics.

“The Human Genome Project taught us that we can take on a large project like this and succeed,” said Ron.  His approach to ME/CFS research reflects his lessons from the Human Genome Project: think big, try new technologies, and bring together interdisciplinary experts.

The week’s events were focused on a molecular perspective of ME/CFS. Why is this exciting? Because it means we can study ME/CFS with a powerful array of molecular and omics techniques now reaching maturity, and it means we can look for molecular therapies. In short, a molecular approach opens up the possibilities for this disease as it has for so many others. With a major issue in ME/CFS being a massive depletion of energy, it stands to reason that mitochondria, the centers of cellular energy metabolism, are a great place to look.

Ron reminded the audience of the goal behind all of this work. “Our holy grail is a cure, but we’ll take treatment,” he said. “When we see a result, we always ask, ‘what does this mean for treatment?'”

The theme of collaboration was evident throughout. The willingness of researchers to share unpublished data in a public symposium speaks to their dedication to moving the field forward by working together. What was especially exciting to see, as Capecchi noted, is how many researchers in different fields are being drawn to ME/CFS. “This is not a disease that can be solved by one person. It needs a community, and lots of expertise,” said Ron. “I will work with anybody to do this.”The collaborations in ME/CFS extend in a unique way to the patients.

“The patient community has been phenomenal in participating in our research,” said Ron. He noted how valuable partnering with patient organizations, communities, and individuals has been for our efforts in advocacy, fundraising, and research.

For more on the Symposium go to:  https://storify.com/raekaaiyar/2017-community-symposium-mecfs

For Cort Johnson’s (patient advocate and author of Health Rising website) summary go to:  https://www.healthrising.org/forums/threads/omf-symposium-to-provide-first-look-at-metabolomic-immune-results-in-me-cfs.5521/

If really up for it, follow the live streamed conference below:

 

Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) is an Inflammatory Disorder

http://simmaronresearch.com/2017/08/major-stanford-study-indicates-chronic-fatigue-syndrome-mecfs-is-inflammatory-disorder/

Conclusion (copied from the link above)

This study, as did the Lipkin/Hornig study, suggested you have to approach ME/CFS differently than other diseases to be successful.

One of the things that emerged from this study is that ME/CFS really, really is different and woe to any researcher who assumes that it’s not. The regular rules of the road do not apply – you can’t just measure cytokine levels and expect to get anything. You have to dig deeper, and what this study and the large Lipkin/Hornig study before it demonstrated was that if you do dig deeper, you might stumble on something extraordinary.

The study’s excellent pedigree – it’s size, the lab it took place in and the journal it was published in – guarantees it will get noticed and that’s a good thing. The most important aspect of the study may be the legitimization it confers on the illness. Hopefully the study will introduce new researchers intrigued by what could be a new type of inflammatory disorder to the field.  While more work is needed, the study also points to possible future effective treatment options. Lastly, the study indicates, as did the Lipkin/Hornig study, that bigger really is much, much better in ME/CFS research. Hopefully funders will take a cue from these large studies, and support the bigger and more definitive studies this disease needs to move forward

Hutt Support Group Meeting 13 July 2017 has been cancelled

Due to high winds, heavy rain warnings and freezing temperatures, the Hutt Support Group meeting scheduled for 13 July has been cancelled.

Next meeting will be 10 August.

Keep warm and stay safe everyone.

Professor Anne La Flamme to speak on ‘When the Body’s Immune system changes from Friend to Foe’ at St Johns in the City Tuesday 9 May: 6:00pm

WellMe is pleased to announce Professor Anne La Flamme as our keynote speaker at its Keynote Speaker Wellington meeting to be held at 6 pm, Tuesday, 9 May at St Johns in the City conference room, Ground Floor, corner of Willis Street, Dixon Street, Te Aro, Wellington 6011.

Professor La Flamme has been in New Zealand for eleven years, and is a Professor in Cell and Immunobiology at the School of Biological Sciences, Victoria University of Wellington. She is also Head of the MS Research Programme at the Malaghan Institute of Medical Research. Professor La Flamme is one of New Zealand’s leading Multiple Sclerosis (MS) researchers and is focused on finding a cure for this immune mediated disease, and in particular aims to find a treatment that will benefit the sub-set of MS patients that do not respond to any existing treatment.

Professor La Flamme received her BSc in Life Sciences from the Massachusetts Institute of Technology and her Masters in Molecular Parasitology and PhD in Immunoparasitology from the University of Washington, Seattle. After receiving her doctorate, Professor La Flamme spent several years at Cornell University studying how parasites alter the host’s immune response and cause immune-mediated pathology.

Recently, Professor La Flamme’s laboratory found that a commonly used anti-psychotic drug is effective at modifying MS in an experimental model of the disease. Through a Neurological Foundation-funded project, she is investigating the potential of this drug to treat MS and the findings will guide future trials of the drug in MS patients. If this drug is effective for the treatment of MS, new insights into immune dysfunction and its contribution to disease pathogenesis will emerge.

Professor La Flamme will talk on ‘When the Body’s Immune System Changes from Friend to Foe and its impact on our health’.

Dr Charles Lapp on our radiowaves following warm reception in Wellington

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.