NIH Forms New Working Group on ME/CFS

NIH recently announced that it is forming a new Working Group on ME/CFS. The announcement is very low on specifics, but this Working Group has the potential to make a big impact on research at NIH.

Dr. Walter Koroshetz, Director of the National Institute for Neurological Diseases and Stroke, publicly announced the Working Group at the May 24, 2018 meeting of the NINDS Advisory Council. In introducing the topic, Dr. Koroshetz asked how many Council members were conversant in ME/CFS and only two people raised their hands (37:55 of this video). That pretty much makes the case for this Working Group right there, in my opinion.

Dr. Koroshetz went on to describe the disease, the need for research, and the Collaborative Research Centers. He explained that the Trans-NIH ME/CFS Working Group is internal to NIH, and the question is how to get input from outside the NIH. Dr. Francis Collins reportedly asked NINDS to form a ME/CFS Working Group of its Advisory Council, with the goal of getting guidance from other federal agencies, and the scientific and patient communities, on how best to advance research on ME/CFS at NIH. Dr. Koroshetz said that Dr. Steven Roberds of the Tuberous Sclerosis Alliance had agreed to lead the Working Group, and that it would report back to the NINDS Council.

At the CFS Advisory Committee meeting on June 20, 2018, Dr. Vicky Whittemore made the same announcement as part of her report to the Committee. She added a little more detail, stating that members of the Working Group would be invited by Dr. Koroshetz, and that more information and a timeline would be announced in the near future. Dr. Whittemore said the Working Group would be looking at the research needs, including whether targeted RFAs are needed.

I reached out to the chair, Dr. Steven Roberds, and asked if he could share any information about the group’s plans, objectives, and membership. Dr. Roberds replied, “Because we are still in the planning stages of the Working Group, I unfortunately don’t have any plans I can share with you at this time for your article. . . I hope we have some specific information to share in the not-too-distant future.”

The membership composition of the Working Group will be key in accomplishing its goals, and the details of that charge and its timeline are of critical importance here. Will this Working Group participate in the planning of NIH’s 2019 meeting on Accelerating Research on ME/CFS? Will the Group make specific recommendations on funding amounts and mechanisms? How much public involvement will there be? We will have to see.

Dr. Roberds is the Chief Scientific Officer of the Tuberous Sclerosis Alliance. That disease has very little in common with ME. Tuberous sclerosis is a genetic disorder that causes non-malignant tumors all over the body. There are also neurological effects, specifically seizures, developmental delay, intellectual disability and autism. Only 50,000 people in the United States have the disease, and many are able to work and live healthy lives.

In stark contrast, there are an estimated 1 million people in the US with ME. While severity varies, the diagnostic criteria for the disease require a significant impact on function and an estimated 25% of people with ME are housebound or bedridden. The neurological effects are quite different from tuberous sclerosis, and people with ME experience severe effects on many other body systems, including the immune, autonomic, and metabolic systems.

So why would Dr. Roberds be selected to lead the ME/CFS Working Group for the NINDS Council? It turns out that he has significant experience in stakeholder engagement.

In 2015, Dr. Roberds helped lead an NIH meeting to update the research plan for tuberous sclerosis. The meeting was co-sponsored by NIH and the TS Alliance, and led to a set of very specific short and long-term research goals.  In 2017, the TS Alliance led an external Patient-Focused Drug Development meeting, and submitted a Voice of the Patient report to FDA.

While Dr. Roberds is not an expert in ME, he does have experience in bringing federal agencies and stakeholders together. As a member of the NINDS Council, he also has insight into NINDS, its strategic and program priorities, and the types of resources available to researchers.

This ME/CFS Working Group could be a key step forward for us. The caveat is whether Dr. Koroshetz with invite the researchers, clinicians, and people affected by ME who can make substantial contributions to the Group’s recommendations, and whether NIH will listen to those recommendations.

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8 Responses to NIH Forms New Working Group on ME/CFS

  1. bobbi ausubel says:

    I am so grateful to the research and writing you do Jennie.

  2. bobbi ausubel says:

    Hi Jennie,

    I am so grateful to you for your ongoing efforts in researching and writing about what is happening for ME. You are a treasure!!!

  3. Wigglethemouse says:

    Is this a rotating mice wheel? Ron Davis provided feedback two years ago to an NIH ME/CFS working group.

    https://www.omf.ngo/2016/07/07/my-suggestions-to-nih-on-mecfs-strategies/

  4. Hope you’re right about his qualifications, “experience in bringing federal agencies and stakeholders together. As a member of the NINDS Council, he also has insight into NINDS,” and that they are actively helpful for real results for us.

    It is still ridiculous how little is known by medical personnel who should have a better grasp on disease than the general public, though. Two people raising their hand to indicate knowledge is a terrible result.

  5. jimells says:

    If NIH wants to know what they should be doing, they could, I dunno, maybe read the last twenty years of CFSCC (est. 1999) and CFSAC (est. 2003) recommendations? And then act on them?

    The public relations people must’ve told NIH management that their image needs a bit more polishing, so the obvious solution is to have more meetings and write yet another report to sit on the shelf and collect dust. ‘Cuz when ya don’t (want to) know what to do, then do what ya know.

  6. billie moore says:

    Oh, goody. Another study group. So helpful to those who pleaded for help yesterday and Wednesday in CFSAC public testimony. Results will take at least a year. Koroshez needs a study group to tell him RFAs are needed? The translation of this announcement is that the NIH, along with the CDC, will not take any action that does not emanate from within the NIH. It also proves, as suggested by jimells, that recommendations by CFSAC are of no consequence whatsoever.

    Thank you, Jennie, for finding out about this and following up with the wonderfully ME-experienced chair. I am not shooting the messenger! We would be much less well informed without your unstinting digging.

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