Archive for Advocacy

Tipping Point? The Stanford Chronic Fatigue Initiative’s Big Year Is Here

We are at the tipping point in our scientific pursuit to identify the biomarkers and central abnormalities of ME/CFS. Several treatment interventions will stem from our work and that of other institutions. We believe that by applying the appropriate methodology and technology, we will be able to conquer Read more [...]

ME/CFS and Fibromyalgia As Functionally Impairing As Major Diseases in Medical World

The study urges the need for more research on FSS, a relatively neglected research area. Especially studies on a better understanding of the etiology and treatment of these disorders are needed. The authors The term functionally somatic syndrome does not have a great history. A 1999 Annals of Internal Read more [...]

A Father Responds: Riding Hard for ME/CFS Research

It was the worst kind of situation. A young girl falls ill - and then gets worse and worse. Instead of helping, the health authorities react with ugly denials and treatment recommendations that leave her worse off than ever. Her family was devastated but her father, Peter Spearing, never gave Read more [...]

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 [...]