Tag: NIH

Last week at NIH: Feb 28 Update

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

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

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

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Solve ME/CFS discusses Walitt, patient participation with NIH

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

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NIH's initial response to article and comments on Walitt

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

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

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

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NIH lead clinical investigator thinks CFS and fibro are somatoform

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

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Jennie Spotila Reports on NIH ME/CFS Spending in 2015

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

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

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

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

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

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CDC Grand Rounds on ME/CFS Tuesday

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

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