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

hunter green rectangle image with fall leaves around the boarder. in the center the #meaction logo and the words, What we are thankful for

#MEAction Gives Thanks

We have come to the time of year, where we focus on what we are thankful for and what has made a difference in our lives. At #MEAction we will always be thankful for this amazing community, for you truly are OUT OF THIS WORLD! With this focus, #MEAction staff share what they are most

Read More »
square image with a white stars on a black background. there is a key image with a heart shape at the top of the key. the words, community is key underneath image. #MEAction logo at bottom of the image.

Community is Key

#MEAction knows COMMUNITY IS KEY! It is through community that we find strength and feel fully seen and heard by others who know our struggles. When challenges come our way, this community has shown us over and over again that we are stronger together. “#MEAction’s community has made sense of this nonsense world of chronic

Read More »
black rectangle with white squiggles in the background. red bubbles and honeycomb in the corners. in the middle a red box that reads: #MEAction & the Mayo Clinic awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant. #MEAction logo in the bottom right hand corner

#MEAction & Mayo Clinic Projects Continue – New Grant Awarded

Given the rapidly changing landscape at the federal level, we recognize that the road ahead may bring some changes for patient advocacy. Even in this evolving environment, we’re excited to share some positive news: #MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by

Read More »
Scroll to Top