#MEAction, Author at #MEAction Network

#MEAction delivers Lancet PACE petition, makes Wall Street Journal

March 8, 2016 23 Comments

#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

March 10th Sacramento screening of Forgotten Plague

March 7, 2016 1 Comment

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.

ME lectures by Mella and others available on DVD

March 7, 2016 No Comments

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.

Participate in the Tuesday March 8th NIH telebriefing

March 6, 2016 1 Comment

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 call for PACE data release, AYME refuses

March 6, 2016 3 Comments

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 to drop functional movement disorder control group from study

March 6, 2016 No Comments

NIH is dropping the functional movement disorder (FMD) control group from their intramural study, according to an email Simon McGrath received from Vicky Whittemore.

#MEAction's Questions for NIH's Intramural Study Team

March 4, 2016 19 Comments

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,

#MEAction Co-founder taking Leave of Absence

March 4, 2016 4 Comments

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

Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever

March 3, 2016 48 Comments

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

Vote: USAWG requests to NINDS director

February 29, 2016 No Comments

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

Author: #MEAction