All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen Mary University of London (QMUL) to release data from the PACE trial. QMUL are due to appeal the UK Information Commissioner’s decision that they should release the data to a patient who requested it, at a
Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding for biomedical innovation and targeting diseases with unmet treatment needs. The $5 billion proposal, called the National Biomedical Research Act, is just one of six bills now being discussed by the Health, Education, Labor & Pensions
At the NIH tele-briefing on Tuesday, March 8th, Dr Walter Koroshetz, Director of NINDS set out the NIH’s strategy for tackling ME/CFS. He said it won’t be an easy task ‘else it would have been solved long ago’, and it wasn’t clear where the solution will come from. The NIH’s focus will be on attracting
Swedish ME patient Kasper Ezelius has announced the launch of an email service called CureME that will allow subscribers to both post and receive news on ME/CFS. Subscribers can choose to receive research news only, which is the main focus of the site. Registration is free. The list replaces Co-cure, an ME/CS information
On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. What follows is a full transcript of the conference call. You can view the transcript and listen to the audio of the call on the NIH website. On the call were
#MEAction delivers Lancet PACE petition, makes Wall Street Journal #MEAction has sent an 11,000-signature petition to The Lancet, calling for the retraction of “misleading” analyses and claims published in a 2011 PACE trial paper concerning the effectiveness of cognitive behavioural therapy and graded exercise therapy for ME/CFS. Copies of the petition, which when printed were
Forgotten Plague, the new documentary about ME/CFS is screening at Reading Cinemas The Tower Theatre in Sacramento, CA at 6:30pm on March 10th, 2016.
In November 2015, six lectures on ME were held in Stavanger, Norway. The event was filmed and made into a DVD which is now available for an international audience with English subtitles for the Norwegian lectures.
Ten organisations so far have joined ME/CFS patient Clark Ellis’s call to Queen Mary University of London (QMUL) to release data from the PACE trial but one group has refused. In early February, Mr Ellis asked seven major UK ME/CFS charities to write to ask QMUL to abandon their tribunal appeal against the UK Information
NIH is dropping the functional movement disorder (FMD) control group from their intramural study, according to an email Simon McGrath received from Vicky Whittemore.
