Archive for Advocacy

IOM’s Gulf War Illness Definition Report Is In: Implications for Chronic Fatigue Syndrome

The First 'Death Contract' Some advocates pointed to the IOM contract to produce a definition for Gulf War Illness IOM as what not to do in ME/CFS.  With no Gulf War Illness experts sitting on the panel, and with an unsatisfactory previous IOM Gulf War Illness report, fears were high that the Read more [...]

Lenny Jason’s Chronic Fatigue Syndrome Mortality Survey Begins

ME AND CFS MORTALITY STUDY RESEARCH PARTICIPANTS NEEDED Were you familiar with someone who had been diagnosed with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) and has since passed away? Researchers at DePaul University are looking to investigate issues related to ME and Read more [...]

The Under Financed ME/CFS Research Field, Pt II: Why it Takes 20 Years to Get 1 Year’s Research Done

As things stand right now, one could say that it takes 20 years to get 1 year’s worth of ME/CFS research done. Why? Because the level of funding allocated for ME/CFS research is 20 times lower than that of comparable diseases. See “The Underfinanced ME/CFS Research, Pt I - Facts and figures Read more [...]

Is Your Health As Valuable As a College Students? A Call To Action From the ME/CFS Treatment Team

Dear Patient Community: We are asking your help to continue to push for treatments for ME/CFS.  Our ME/CFS Treatment team will continue to work for meetings between the FDA and pharmaceutical companies with the sole purpose of urging them to develop and approve drugs to treat ME/CFS. People Read more [...]

‘Behind Closed Doors’ – Jennie Spotila Uncovers Another ‘Secret’ Government Chronic Fatigue Syndrome Project

(Here we go again? Just months after Jennie Spotila uncovered the mess that was the IOM contract, she reports another ME/CFS project is going on behind closed doors. Once again the principals aren't talking.  Ironically the government is starting to spend some money on chronic fatigue syndrome, Read more [...]

Canary Singing: Jen Brea Portrays Chronic Fatigue Syndrome on News Channel

Canaries didn't warn coal miners that the air was bad by dying. It was when they stopped singing that miners knew the air was getting foul.  Jen Brea may be sick. but she's singing loud and clear about chronic fatigue syndrome in her film project. In an empathetic  video interview with Al Jazeera, Read more [...]

Unfulfilled Commitments / Broken Promises: The NIH and Chronic Fatigue Syndrome After Twenty Five Years

An Institute for All Americans? This Budget request represents the Administration’s priorities for guiding the Department of Health and Human Services (HHS) to enhance the health and well-being of all Americans. National Institutes of Health The Department of Health and Human Services 2013 Read more [...]

Speaking to Power: Dr. Peterson in Sweden, ME/CFS Patients in the Netherlands Take it to the Parliament

(Dr. Peterson speaks to the Swedish Parliament and years of effort in Holland culminate in the delivery of a petition to have ME/CFS be considered and treated as a biomedical disease in blogs by Anne Ortegren and Esme de Groot.) Dr Peterson in Sweden by Anne Ortegren Dr Peterson and Gunnar Read more [...]