PLOS One today published a statement that its staff were evaluating Professor James Coyne’s request for data from a PACE trial paper published in the journal in 2012. Professor Coyne said on social media that the move “represents progress”. King’s College London had denied Professor Coyne’s request on behalf of the study authors and had
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=””
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
