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 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.”

Facebook
Twitter
WhatsApp
Email

Latest News

#MEAction logo is in white in the top left corner and the words Colorado State Chapter are in white laying across an image of snow capped mountains and pine trees. There is a bottom section of the image that is a green box with the words Working-With-Governors-Office-to-Create A New Senior Policy Advisor Role-Leading to Statewide Report on Long COVID

#MEAction Colorado Works With Governor’s Office to Create A New Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning–Leading to Statewide Report on Long COVID

#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February 25, 2020. Representative Alex Valdez read into the legislative record a proclamation about the presence of and deleterious effects of ME in Colorado. This effort was relatively easy to accomplish and consisted of finding a representative

Read More »
Left: Woman healthy and happy standing beside her husband. Right: Sick woman in hospital bed.

Woman with Severe ME and EDS starving to death in NHS hospital

UPDATE: We want to provide a brief update on Sami Berry’s case and what she needs help with now. The situation in hospital reached the point that Sami decided she had to self-discharge to try and stay alive. She is at home with a Percutaneous Endoscopic Jejunostomy (PEJ ) tube but she needs treatment with

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top