Join the #MillionsMissing San Francisco Demonstration on May 25
April 18, 2016
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Please join us in San Francisco, or send us your photo. Help us all to be seen and heard!
Tag: MECFS
Keep PACE out of WebMD and HealthDay
April 15, 2016
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Web MD, the largest online publisher of news and information regarding health and well-being, has released its “latest news” about ME/CFS in an article based on the discredited PACE trials. It asserts that “British researchers concluded that a form of talk therapy, called cognitive behavior therapy, and graded exercise therapy are among the best treatments for chronic fatigue.”
Meet the Scientists: Dr Sarah Knight
April 13, 2016
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Meet the Scientists: Meet Dr Sarah Knight, looking at brain scans for neurological markers in children and adolescents with ME/CFS (Canadian Consensus Criteria).
NIH Employs Creative Effort to Boost Current Research for ME/CFS
April 8, 2016
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In a first for ME/CFS research, NIH launched a creative grant expansion program to jump start ME/CFS research in the short term by supplementing current grants.
Three Biomarker Discoveries in March
March 31, 2016
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March 2015 has been a busy month for biomarker discoveries for patients with chronic fatigue syndrome (Fukuda criteria), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Canadian Consensus Criteria) and International Consensus Criteria ME.
Why is MEpedia so crucial?
March 22, 2016
2 Comments
MEpedia is a crucial tool for advocates, researchers, doctors, policy makers, and even the general public, that will allow them to find all current information on myalgic encephalomyelitis in one place.
NIH to patients, “We are your partners”
March 21, 2016
9 Comments
The National Institutes of Health’s (NIH’s) ‘New Deal’ for ME/CFS, particularly the intramural study, has had a very mixed reaction from the patient community. Update: NIH gives update on consulting patients, and says RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations saying its new plans include RFAs (plural) and
Clarification on NINDS role in ME/CFS Research
March 19, 2016
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After the March 8th telebriefing with the NIH, many advocates in the ME community still came away with questions. Billie Moore, NJME/CFSA Advocacy Chair, and member of the USAWGaAnd CDC’s TDW Workgroup, was one of them. Though representatives of the NIH spoke at great length about the big picture of the new ME/CFS efforts that the organization is
24 organisations in 14 countries tell QMUL: release PACE data
March 13, 2016
6 Comments
All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen Mary University of London (QMUL) to release data from the PACE trial. QMUL are due to appeal the UK Information Commissioner’s decision that they should release the data to a patient who requested it, at a
New Bill Would Up NIH/FDA Funding For Neglected Diseases
March 10, 2016
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Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding for biomedical innovation and targeting diseases with unmet treatment needs. The $5 billion proposal, called the National Biomedical Research Act, is just one of six bills now being discussed by the Health, Education, Labor & Pensions