There are thousands of people with M.E. (Myalgic Encephalomyelitis) in Ireland. At the very best, we receive only symptom management from our doctors, that’s the best they can do for us. There is a drug, Ampligen (Rintatolimod), for the treatment of M.E. Ampligen has been successfully trialled in the U.S.A. for the last two decades.
On February 3, 2016, a group of patient organizations and advocates (including #MEAction) sent a followup letter to the Agency for Healthcare Research and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of
Tell our charities: QMUL must release PACE data I need your help. The UK Information Commissioner recently ruled that Queen Mary University of London (QMUL) must release PACE trial data requested by a patient under the Freedom of Information Act. However, QMUL appealed. The appeal will soon be heard at a tribunal. Meanwhile the PACE
Large controversial UK study still refusing to release data: latest update on the PACE trial
Queen Mary University of London (QMUL), acting on behalf of the authors of the highly controversial PACE trial, has rejected a request made by a group of scientists for raw, anonymised data from the trial. The group was led by world-famous geneticist Professor Ron Davis of Stanford University, whose son, Whitney Dafoe, is gravely ill
Calling all British M.E. sufferers & allies, Inspired by our American friends and the progress that has been made over in the States with government funding and new research projects, we think it’s time for patients to put the pressure on the UK parliament. We are asking for an increase in budget to fund bio-medical research as well as the formation of a work group to represent the issues facing our community in government.
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”,
[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
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
