Archive for Advocacy

P2P Report on Chronic Fatigue Syndrome Delayed After Irregularities Found

Jennie Spotila has stopped the publication of the Pathways to Prevention report on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (!) Actually she's just paused it. During her sleuthing (which included filing a Freedom of Information Act) Jennie found that many of the public comments were Read more [...]

Eyes on the Prize: NIH Spending On ME/CFS in 2014

(Thanks to our ace advocate Jennie Spotila for allowing Health Rising to post her blog on NIH spending. With it's 30 billion plus budget the NIH is easily the biggest single medical research funder in the world.   The good news is that from the Younger biomarker to the Patrick exercise to the Katz Read more [...]

Former NIH Official Says Chronic Fatigue Syndrome Program Must Move In Order to Succeed

Dennis Mangan was the chair of the Trans-NIH Working Group for ME/CFS, a little-known but critical element of the chronic fatigue syndrome program at the National Institutes of Health (NIH).  In this long interview done last year I asked him, a former insider, why it's so been so difficult to get Read more [...]

Hearing Requested for Denial of Treatment For ME/CFS

 Take Action       Patients Needed:               PART 1: Instructions to Take Action  To All ME/CFS –S.E.I.D. Patients, Family and Friends, As most patients know the IOM and NIH P2P have released some positive findings in our disease. While there Read more [...]

A New Name For Chronic Fatigue Syndrome? The Community Weighs In

About 4500 people saw the survey and about 550 took it. The survey consisted of a ranking mechanism that allowed the participants to rank their favorite names from first to last. The survey tool from Gravity Forms  then produced an aggregate score. Survey Round I ME was the clear winner with Ramsey's Read more [...]

IOM Swings For the Fences: Proposes New Name and Definition for Chronic Fatigue Syndrome

"It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients." IOM Report The title of the report "Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining Read more [...]

Congressional Hearing To Remove Roadblocks to Ampligen Approval at FDA

In talking with experts and reviewing the drugs that have been approved over the past couple of years, we believe it is our right to ask Congress to hold a hearing to review the denial of Ampligen.  Below is a draft letter along with the email addresses where the letter should be sent.  It is clear Read more [...]

CFSAC Finally Becoming Relevant: Holds Special P2P Session Tomorrow

"I can put my fingers on 2,000 well-characterized patients. The work could be done, so why haven't we done that yet? Because  - every single one of the things I have just described - not one of them is receiving federal dollars." - Dr. Nancy Klimas - P2P Workshop The Federal Advisory Committee for Read more [...]