Professor James Coyne’s request for the dataset used for a paper about the PACE trial in the journal PLOS ONE was rejected on Friday as “vexatious”. King’s College London (KCL), acting for the PACE authors, wrote to Professor Coyne that they considered that there was “a lack of value or serious purpose to [his] request”,
A new study has found that two human herpesviruses: Epstein-Barr virus (EBV) and Kaposi’s sarcoma-associated herpesvirus (KSHV), previously only proven to infect B cells, can also infect neurons. For years there has been indirect evidence that gammaherpesviruses like EBV and KSHV could infect nervous tissue. For example, EBV viruses have been found in the cerebrospinal fluid and brain tissue
[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
Professor James Coyne yesterday posted online his letter to PLOS One complaining about the PACE authors’ failure to provide him with data from a paper published in the journal. Coyne’s letter was premature because he had been misinformed that he would receive a response within 20 days rather than 20 working days. However, it indicated
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
The United States Department of Labor is proposing new regulations about certain disability claims. Tell them you support this.
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
This is the sixth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur to meet other activists “face to face.” It’s an opportunity to ask big picture questions about the platform, brainstorm strategy, and offer suggestions for future directions. We’d love this call to especially focus on connecting with
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
Medline Plus, NIH’s web site for patients, just published an article from health news distributor Healthday, based on the recent, discredited U.K. PACE study. The new article states that “cognitive behavioral therapy and graded exercise therapy are among the best available treatments for extended relief” of ME/CFS. Fortunately, if you want to file a complaint about this article, it’s super easy.
