In an invited post on UK charity Action for ME’s blog, Professor George Davey Smith of Bristol University has told patients that the UK’s planned, major ME/CFS project, the Grand Challenge could “herald a new era in ME research”. Action for ME’s CEO, Sonya Chowdhury, described the project, which was announced at October’s UK CFS/ME
After the March 8th telebriefing with the NIH, many advocates in the ME community still came away with questions. Billie Moore, NJME/CFSA Advocacy Chair, and member of the USAWGaAnd CDC’s TDW Workgroup, was one of them. Though representatives of the NIH spoke at great length about the big picture of the new ME/CFS efforts that the organization is
New US paper says it is critical that scientists world-wide develop consensus on how to identify and classify chronic fatigue syndrome and myalgic encephalomyelitis patients using clinical and research criteria.
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
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
Recommendations submitted by advocates to NINDS to proactively contribute to a strong federal research program and to encourage collaboration between NIH and our community.
Last Week at NIH with a focus on the post-infectious ME/CFS intramural study – You can watch an introduction to the proposed NIH intramural study from the Principal Investigator of the study, Dr Nath, and can read a full transcript of his presentation and the subsequent Q&A session. The presentation was from two weeks ago
Over the weekend we wrote to NIH to share our article about Brian Walitt, along with comments from the community. We have received an initial response, but expect there will be more responses forthcoming that directly address patients’ concerns. The NIH also said they are finalizing a communications plan on the study so that communications