Big donations speeding up Big Data Study
February 12, 2016
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The Open Medicine Foundation’s Big Data study on severely ill patients can, and is, speeding up thanks to big donations.
Search Results for: PACE – Page 38
We All Have CFS, Like It Or Not
February 1, 2016
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I’ve been inspired to write by Lucibee’s recent blogpost about the PACE trial (https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/), She raises an important point about how patients can sometimes be received for reporting any sort of improvement from CBT or GET.
Australian Health Dept answers questions on ME
January 20, 2016
14 Comments
Most of the $2.4 million in research the Australian government says is for CFS is spent on psychology, exercise or for other conditions such as hepatitis C. No studies funded in a decade.
Over twenty US organizations and advocates announce new working group
December 22, 2015
26 Comments
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
Norwegian researchers ask 'What exactly is M.E.?'
December 10, 2015
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Norwegian researchers say patients with ME have more severe symptoms than those with chronic fatigue syndrome, but better mental health.
Charles Shepherd: It's time for doctors to apologise to ME patients
December 7, 2015
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[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””] “I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong” [/pullquote] In this excellent piece in Monday’s Daily Telegraph, Dr. Charles Shepherd describes the history of ME’s neglect and says it’s time for doctors
Announcing MEpedia: a knowledge base for ME science and history
December 6, 2015
40 Comments
What if we could take all of the information we have learned from all of those years of hundreds of people reading and writing about thousands of news and research articles across all of our forums and blogs and Facebook pages, and create one massive, interlinked, and structured knowledge base?
We Succeeded in Removing NIH CBT and GET Advice
December 3, 2015
16 Comments
NIH has now removed its Medline/ National Library of Medicine (NLM) article promoting CBT and GET for ME/CFS treatment. It was taken down just DAYS after we began filing complaints. I received a response from NLM explaining that they “removed the article since it did not provide a balanced view on the topic.” Although the
Debunking the myth of the militant minority
December 3, 2015
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In the British media, ME activists who have opposed cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are often been portrayed as an unreasonable, militant “minority.” Members of the #MEAction Science and Treatment Policy and Media Working Groups have drafted this fact sheet to explain the real reasons why ME patients are opposed to CBT and
Support #MEAction this Giving Tuesday
December 1, 2015
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It’s been an amazing year in ME advocacy. In countries all around the world, patients are rising up with a new energy (if that’s the right word!) of creativity and collaboration. There is a growing sense that we are living in a moment that is bigger than any one advocate or organization. That we are at the