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.
On Tuesday, March 8th at 10am ET, the NIH is holding a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. Due to the limitations of the technology, only 100 lines are available. Call-in information has been sent to a select number of advocates including members of
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,
Our co-founder, Beth, is taking an indefinite leave-of-absence to focus on her health. She is very grateful for all of the support she has received. We will be working hard on hiring an editor and community organizer over the next couple of weeks, but we may be slow at posting/ responding to comments and emails
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
The US Action Working Group (USAWG) is submitting a letter to NINDS director Walter Koroshetz detailing a list of requests relating to patient participation, extramural funding and the intramural research agenda. You can read that list of requests here. All USAWG actions are opt-in. We would like to poll active #MEAction members who are American citizens or residents
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
