Neat ME/CFS News

There has been some really neat news for ME/CFS recently, here’s a quick round up..

Something Left Field

New technology can transform knowledge in disease and illness. With caveats in mind and no claims of solid biomarkers yet, Professor Ron Davis from Stanford and the Open Medicine Foundation has shared news on this video regarding progress in their ME/CFS work. They are applying new promising technology and techniques to ME/CFS and finding very interesting things. If this work pans out, and Dr. Davis has stressed there is a long way to go, it could possibly turn out to be exciting left field discovery research. There is a transcript for this video on the OMF site here and also a follow up Q and A video here.

 

A PACE Trial Pounding

‘An open letter to Psychological Medicine about “recovery” and the PACE trial’ has been published on Virology Blog. The letter requests a retraction of the PACE trial recovery paper results and has so far been signed by over 140 clinicians, scientists, experts and patient groups. An exceptionally dismissive reply from the editor of Pychological Medicine was received in response.The New York times published an excoriating Op-Ed ‘Getting it Wrong on Chronic Fatigue Syndrome’, by Julie Rehmeyer and David Tuller. An Op- Ed like this does not get into the New York Times lightly and there is a thorough fact checking process. David and Julie state in this piece that “the impact of the trial on treatment options for the estimated one million chronic fatigue patients in the United States has been profound. The Mayo Clinic, Kaiser Permanente, WebMD, the American Academy of Family Physicians and others recommend psychotherapy and a steady increase in exercise”.

In short, this episode has damaged public trust in science. Doctors and medical organizations must stop recommending these two therapies for ME/CFS as treatment options. Next, the disputed findings must be retracted. Finally, health agencies must ramp up funding for medical research to develop accurate diagnostic tests and pharmacological treatments. A million Americans are waiting. ~ Julie Rehmyer and David Tuller

This is strong pressure on the PACE trial and it just keeps compounding! Incidentally, Julie Rehmeyer also has a book coming out that people may like to read. ‘Through the Shadowlands‘ will be available soon and #MEAction have just interviewed Julie about her book and the Op-Ed in the New York Times.

The NIH Directors blog

 

The National Institutes of Health Director Dr. Francis Collins and Dr. Walter Koroshetz the NIH director of NINDS, have written an article ‘Moving Towards Answers in ME/CFS’ for the NIH Directors Blog. This highlights the efforts the NIH are undertaking for ME/CFS. Importantly, this shows very public commitment to ME/CFS stating:

“The NIH is committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition”

This blog will help get word out to researchers about these efforts and is worth a read. Dr. Koroshetz and Dr. Collins state in that “the NIH is always open for other scientists to submit research grants on ME/CFS, and most NIH funding goes to these regular grant proposals, which are reviewed on a three times per year cycle”.

It is great they are encouraging submissions for grants in this. There was a cringe moment with the classic image of a person in bed looking like they had the flu, but generally this was a positive step forward. It is important to note though that a big problem for ME/CFS with the standard grant process is that it is most conducive to hypothesis driven research, not investigative research.

Dr. Collins May Be Staying On As NIH Director

The Solve ME/CFS Initiative newsletter has just reported that Dr. Francis Collins has been invited to stay on as Director of the NIH, stating:

“Dr. Nahle was able to meet briefly with Dr. Francis Collins who announced at the conference that he has been officially invited by the new administration to continue as the Director of the NIH.”

Hopefully Dr. Collins does choose to continue his role, as we have had more movement than ever before under his leadership. This would also help with some continuity for ME/CFS when there are very large concerns due to the recent proposed federal budget cuts to the NIH. These budget cuts are detailed more here by Jennie Spotila, Cort Johnson and the Solve ME/CFS initiative. The concerns are very real, please take action and contact republican representatives and tell them you do not want the NIH budget to be cut!

Jennifer Brea Blazes a Trail

 

Jen’s film ‘Unrest’ keeps gaining constant praise as it scorches through film festivals and pulls in mainstream media. In Denmark, Jen had a Television DR2 Dagen interview which you can view in English starting at 1.30 minutes, there was also a storm of front page newspaper coverage!  Check to see if there is a screening near you or find out how you can host one. The Unrest team plan to go to every film festival possible and Jen is thoroughly blazing a trail. She is busy starting the conversation on ME/CFS everywhere while she brings out the unseen stories of so many. See the Unrest website for all information.

Please keep donating to quality researchers, they are in need of our support to get established.

Our MDP patient team works to raise funds for this fantastic investigative research in ME/CFS led by Dr. Ian Lipkin and Dr. Mady Hornig at Columbia University Center for Infection and Immunity! Please check it out and donate if you can!