Category: Advocacy

Columbia professor says PACE damaging Lancet’s reputation

Yesterday, Columbia University professor of statistics Andrew Gelman published a warning that The Lancet was risking its reputation by refusing to rectify errors in the main paper on the PACE trial that appeared in the journal in 2011. In his article on a popular statistics blog, Professor Gelman described the PACE authors’ refusal to share

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In-Depth article on ME/CFS Research Plans

MedPage Today’s Update on ME/CFS Research Plans MedPage Today reposted Shannon Firth’s earlier article on ME/CFS in their 2015 recap and also published an in-depth update by the author. The new article goes in-depth on Ron Davis’ plans for the Big Data study and also includes an interview with Jen Brea and information from the

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David Tuller: 68 unanswered questions about the PACE trial

Yesterday, journalist and public health expert Dr. David Tuller published on Virology Blog a list of 68 questions for the authors of the controversial PACE trial. The trial studied the effects of graded exercise and cognitive therapy on chronic fatigue syndrome. Dr. Tuller has, he said, been seeking answers from the PACE researchers for more

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Ron Davis' Plea for his Son's Life

Ron Davis’ Plea for his Son’s Life Ron Davis recently posted a heart-felt plea for more research “before his son, and others like him, die from this horrific disease.” He has given us permission to share his post in order to reach as many people as possible with Whitney’s story. Here is Dr Davis’ plea:

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Over twenty US organizations and advocates announce new working group

Help us build a powerful, participatory voice for change in Washington #MEAction is thrilled to announce that we are coming together with over twenty organizations, bloggers, and independent advocates to form a US Action Working Group. We aim to create a powerful, participatory voice for change in Congress, across our federal agencies, and in medicine. Read the

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NIH considering Ampligen and Rituximab trials

Basic research and drug trials under discussion at the NIH In October, the National Institutes of Health (NIH) announced it was stepping up its commitment to ME/CFS and would be expanding its intramural and extramural research programs. Francis Collins, director of the NIH, told Science that his colleagues were “determined to move pretty fast on this.”

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Tell Congress to Increase ME Funding

Have you always wanted to email your Congressmen/ women about ME/CFS but don’t know what to say? Or maybe you’re too sick to draft a letter? We’ve made it easy! Just go to the listed website and copy and paste the sample letter!

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What the CDC needs to know about the $5.4 million funding restoration

In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was restored to the full $5.4 million. The omnibus budget bill is expected to pass both houses on Friday. CDC funding for ME/CFS had previously been cut to $0 in the proposed 2016 budget. [pullquote align=”right” cite=”” link=”” color=”” class=””

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