Advocacy Archives

Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis

February 21, 2016 2 Comments

Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis Dear Francis Collins: The following happened since I got sick, without the NIH funding myalgic encephalomyelitis (m.e.) as a global crisis: Humans landed on the moon AIDS discovered, science, HIV discovered, excellent treatments; 2015 US funding $30.7 billion.1 multiple sclerosis sufferers released from mental

NIH lead clinical investigator thinks CFS and fibro are somatoform

February 20, 2016 152 Comments

Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic. In 2015, Walitt co-authored a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity

Jennie Spotila Reports on NIH ME/CFS Spending in 2015

February 18, 2016 1 Comment

Jennie Spotila Reports on NIH ME/CFS Spending in 2015 Jennie Spotila has written another detailed analysis on NIH spending on ME/CFS research. On a positive note, spending on ME/CFS grants increased to $6,470,000 in 2015, which was a 20% increase over fiscal year 2014 and, “for the first time since at least 2009, there were no

Dr Nath on ACT UP and patient involvement in ME/CFS research

February 17, 2016 No Comments

At Tuesday’s CDC Grand Rounds Wilhelmina Jenkins, a long-time ME/CFS advocate, asked Dr. Avindra Nath, the PI of the NIH intramural study, a question about the planned Patient Advisory Committee mentioned in his presentation and about RFAs. We thought patients and allies may find a video and transcript of the question and Dr Nath’s response

Transcripts and Slides from Dr Nath's talk on NIH study

February 16, 2016 6 Comments

Update: The video of Dr Nath’s talk is now available on youtube. Dr Avindra Nath, Chief of the Section of Infections of the Nervous System at NINDS, gave a presentation on February 16 at CDC Grand Rounds going which went into detail on NIH’s new intramural ME/CFS study. The recording should be up on February 18 at http://www.cdc.gov/cdcgrandrounds/, but

PACE Trial’s Forbidden Fruits: The Fruit of Your Labour

February 16, 2016 1 Comment

A look at what you achieved by asking charities to call on the anonymized PACE trial data to be released, and what this means going forward.

CDC Grand Rounds on ME/CFS Tuesday

February 14, 2016 No Comments

ME/CFS is going to be the topic for CDC’s monthly Grand Rounds this Tuesday at 1 pm ET. The title of the session is “Chronic Fatigue Syndrome: Advancing Research and Clinical Education.” The presenters will be Anthony Komaroff (Harvard Medical Center), Elizabeth Unger (Chief of CDC’s Chronic Viral Diseases Branch), Charles Lapp (Hunter-Hopkins Center, P.A.), and Avindra

free patient conference call

February 14, 2016 No Comments

chat live with other pwme globally

Submit your questions to the NIH

February 12, 2016 No Comments

We invite everyone in this community to take a look at these questions and add your suggestions for additional questions or changes below. We plan to collate them and submit an additional list of questions.

USAWG submits questions to the NIH

February 12, 2016 35 Comments

Over the weekend, members of the US Action Working Group (USAWG) were alerted to the publication of the National Institutes of Health’s study protocol (as posted originally). The content of the published protocol caused a number of concerns across the community, chief among them that the Reeves criteria were apparently being used as the basis for selecting

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