On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. What follows is a full transcript of the conference call. You can view the transcript and listen to the audio of the call on the NIH website. On the call were
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.
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
Recommendations submitted by advocates to NINDS to proactively contribute to a strong federal research program and to encourage collaboration between NIH and our community.
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
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
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pace of formal patient involvement in the NIH’s new ME/CFS research program; and the originally-released use of the outdated Reeves criteria for selecting patients for the upcoming NIH inpatient
The US National Institutes of Health (NIH) has announced a $246,000 grant to study the use of an oral solution of isotonic saline to reduce orthostatic intolerance (OI) in ME/CFS patients. The grant has been awarded to New York Medical College’s Professor Marvin Medow, who has long had an interest in OI in ME/CFS, particularly
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
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
