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
Update: NIH confirms RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations and made clear there would be more than one RFA, without saying how much money it would commit. The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive research strategy for ME/CFS research
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
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
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.
The US National Institutes of Health (NIH) is hosting a telebriefing on Tuesday to “share information about [their] upcoming activities and to gather feedback” from the ME/CFS advocacy community. They have limited phone lines and said they want to make sure to address questions from representatives from community organizations and leaders, so the call is not open to the entire public,
Update (Sunday March 6, 1630 GMT): NIH drops FMD control group I’d asked Dr Vicky Whittemore is she had any corrections to the content and got this reply: The only correction I have at this time is that it has been decided that they will not include individuals with functional movement disorders in this study
