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 but is still the best overview of the study from NIH at this point since, in the three weeks since the protocol was posted, they have only published one short post about patient recruitment.
– Brian Vastag sent an email to Francis Collins on February 8th and received a response from Dr Collins on February 17th. Dr Collins’ reply covers the CFSAC response from NIH, including the patient voice in decision-making, the use of CCC in selecting study subjects, and more.
– There is a comprehensive MEpedia page about the study, which is being updated frequently. It includes information on the study protocol, all of the investigators, criticisms, and more.
– NIH has told #MEAction via email they are “setting up a call-in to describe the NIH plans to the community and answer questions “ They told the Solve ME/CFS Initiative something similar in a meeting between Vicky Whittemore and Carol Head on Tuesday, but they have not announced a day or time for the call yet. They have also said they are setting up a website to explain more about the study which will include answers to the community’s questions. And NIH said that the CFSAC responses would be updated as early as next week to reflect the trans-NIH Working Group’s work.
– NIH’s initial response to our post about the current Lead Associate Investigator did not acknowledge the major concerns from many in the community (our post and Jeanette Burmeister’s analysis) about Dr Walitt’s statements regarding fibromyalgia and Chronic Fatigue Syndrome.
– Cort Johnson shares a different perspective on Dr Walitt and his views on ME/CFS and fibromyalgia.
– As mentioned above, Carol Head spoke with Vicky Whittemore of NIH about their strong opposition to Walitt’s position as Lead Associate Investigator. Dr Whittemore was “very receptive to [SMCI’s] strong opposition to Dr. Walitt’s participation in the study, but said that she has no role in the study design or staffing; that rests with Dr. Nath.” Dr Whittemore also shared some of NIH’s suggestions for incorporating patient feedback into the decision-making process.
– #MEAction is collecting more ideas from the patient community on how NIH should incorporate patient input in a meaningful way in all areas.
– There is an interesting thread looking into the backgrounds and research interests of all of the investigators of the study at http://forums.phoenixrising.me/index.php?threads/investigating-the-investigators-of-the-upcoming-post-infectious-nih-study.43223/.
– Dr Collins mentioned ME/CFS in a recent blog post about Lyme. He said about the gene expression pattern in white blood cells in patients treated for Lyme disease, “in fact, the signature 6 months after treatment showed intriguing similarities with autoimmune diseases, including lupus, rheumatoid arthritis, and chronic fatigue syndrome.”
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the