By David Tuller, DrPH
Embedding ME/CFS in NIH’s RECOVER initiative
Ian Lipkin is a well-known professor of epidemiology at Columbia University and director of the Center for Solutions for ME/CFS, funded by the U.S. National Institutes of Health (NIH). In a recent opinion piece for STAT, he and ME/CFS patient advocate Elizabeth Ansell, the founder and executive director of a campaign slugged #NotJustFatigue, call for the NIH’s RECOVER initiative, which investigates Long Covid, to fully embed ME/CFS into its future plans.
The authors note that their appeal for better integration of ME/CFS into the RECOVER mission is aligned with recent recommendations from Congress as well as scientific and medical experts. They also highlights the many challenges that people with ME/CFS can face in trying to navigate an uncaring health care system and deal with dismissive or unsympathetic clinicians.
Here’s a key passage:
“RECOVER has the potential to be a model for innovative, patient-centered research. But for that to happen, NIH must listen to Congress, the scientific community, and the millions of individuals waiting for hope. Including ME/CFS within RECOVER’s scope is not just an opportunity — it’s an imperative. With hundreds of millions in funding and the largest-ever cohort of people with post-viral illnesses, RECOVER could provide the answers that ME/CFS researchers have sought for decades. NIH must seize this moment to lead.”
This is a smart message. But it presumes the future research will be smart as well. The article could have clarified that not all cases lumped into the Long Covid category are the same and that only a subset meet ME/CFS criteria. For research to be useful, it clearly needs to take these facts into account.
You can read the piece here. (Unfortunately, it is behind a paywall, but there seem to be archived versions out there.)
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Dutch CBT/GET ideologues maintain high media profile
My friend Anil van der Zee frequently blogs and makes haunting videos about his experiences as a longtime severe patient. He also takes stunning photographs from his perch on the bed in his Amsterdam flat. He recently wrote a post about his distress at seeing that leading Dutch advocates of cognitive behavior therapy (CBT) and graded exercise therapy (GET) continue to have a major media presence and significant impact on public debate.
Anil’s work is always worth a read (or a view, depending on the medium). Here’s the opening of his recent post (via Google translate):
“I have read the news reports about the opening of long-COVID clinics for children with mixed feelings. On the one hand, I find the stories of children and young people with long COVID incredibly distressing; they are consistent with what we have seen in ME for decades. Many of those with ME are now adults, some even 60+ years old. I am glad that at least there finally seems to be more help for a small proportion of children and young people with long COVID. Hopefully this will be beneficial to all children and young people with post-acute infectious diseases (PAIZ) or infection-associated chronic diseases.
“On the other hand, I read with pain in my heart that a doctor like Sanne Nijhof is given a large platform in the media. It is doctors like Sanne Nijhof and her predecessor and colleague Elise van de Putte from the Wilhelmina Children’s Hospital (WKZ) who have not only researched cognitive behavioral therapy/graded exercise therapy (CBT/GET) in their FITNET-study, but have also actively promoted and praised this treatment.
“As a result, CBT/GET has been applied for years as a standard treatment for children with ME, while we have known for decades that people with ME deteriorate due to post-exertional malaise (PEM) – getting sicker after minor physical, cognitive, sensory, or emotional exertion – from the buildup of activities that these treatments are based on. It is also important to mention that about 50% of Long-Covid patients meet the ME criteria and therefore also have PEM.”
You can read the full blog post here.
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Information disappears from U.S. government websites
The ongoing dismantling of U.S. government agencies and programs is worldwide news. The Sick Times, the online outlet that covers Long Covid, is tracking how the dismantling impacts this specific domain. The news organization reported the other day on the removal of important online information from government websites. The article’s headline: “Now offline: Government resources about Long COVID as a disability.”
Here’s some of the bad news:
“Several government resources about accommodations for people with Long COVID have become unavailable in the last week, following purges of government websites and datasets under the Trump administration. These pages offered crucial information about rights under the Americans with Disabilities Act (ADA) for people with Long COVID and their employers.
“In 2021, the federal government recognized that Long COVID can be considered a disability under the ADA. Pages and articles on AskJAN, a public-facing website by the U.S. Department of Labor’s Job Accommodation Network, explained how people with Long COVID could use this law to request accommodations that would make their jobs, schools, or other aspects of their day-to-day lives possible.
“As of February 11, Long COVID is no longer included in AskJAN’s directory of disabilities. The website’s Long COVID resources — which previously included information about the disease’s legal status, key symptoms, and suggestions for accommodations — are also unavailable. (View an archived copy of AskJAN’s Long COVID landing page here.)“
You can read the full article here.
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Disclosure: My academic position at the University of California, Berkeley, is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.