Featured news Archives

Category: Featured news

#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,

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

Griffith Uni claims breakthrough on diagnostic blood test

March 3, 2016 6 Comments

Australian scientists say they are close to marketing a diagnostic test for Chronic Fatigue Syndrome.

NEW TIME Australia: See Forgotten Plague Film in Canberra

March 3, 2016 No Comments

UPDATED: Canberra screenings of film ‘Forgotten Plague’ on Friday 1 April at 6pm or Monday 4 April at 1pm.

Last week at NIH: Feb 28 Update

February 28, 2016 No Comments

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

Australia shouldn't fund 'totally inappropriate' CBT and GET

February 28, 2016 4 Comments

‘Chronic fatigue syndrome chronically underfunded’, Australian community radio current affairs program.

NIH patient participation and communication: what do you want to see?

February 25, 2016 12 Comments

How should patients be integrated into the NIH process? The US National Institutes of Health has made several promising, public steps forward in recent months, announcing a new commitment to research ME/CFS, hinting at possible new drug trials, and promising to use strict criteria including the Canadian Consensus Criteria to select patients for their intramural studies. Yet

Solve ME/CFS discusses Walitt, patient participation with NIH

February 24, 2016 No Comments

Solve ME/CFS had a conversation with Vicky Whittemore of the US National Institutes of Health today regarding some pressing issues, in particular the participation of Brian Walitt in the study and the NIH’s plans for patient involvement. Dr. Whittemore was receptive to Solve ME/CFS’s opposition to Dr. Walitt’s participation in the study, but said that she has

Progress In ME/CFS Patient Advocacy: Overcoming The Militant Meme & Why We Must Keep Evolving

February 24, 2016 19 Comments

What is the role of outrage in activism? “Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change.”

Bad timing, Collins says of NIH response to CFSAC

February 22, 2016 3 Comments

On Feb. 8, I wrote to NIH Director Francis Collins to express concern over the NIH’s mostly negative responses to the CFS Advisory Committee’s latest recommendations; the slow pace of formal patient involvement in the NIH’s new ME/CFS research program; and the originally-released use of the outdated Reeves criteria for selecting patients for the upcoming NIH inpatient