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Dr David Tuller: The CDC’s Stakeholder Meeting


Senior Member

Trial By Error: The CDC’s Stakeholder Meeting

By David Tuller, DrPH

The US Centers for Disease Control held one of its occasional briefings for ME/CFS stakeholders last week. I was unfortunately busy during that time, but #MEAction has posted a useful account of what was discussed, which you can read here. The #MEAction account includes short, helpful descriptions of a number of CDC initiatives, including efforts involving possible links between long-term complications of Covid-19 and ME/CFS.

One point of discussion came when advocates pressed the agency to specifically disavow cognitive behavior therapy and graded exercise therapy. An ongoing failing of the CDC has been its refusal to frankly acknowledge its error in advocating for the cognitive behavior therapy/grade exercise therapy (CBT/GET) paradigm based on the discredited PACE trial and related research. And the CDC sponsored and highlights on its site a continuing medical education (CME) program that appears to promote GET, however cautiously, based on a debunked understanding of the illness.

This is the question posed by one advocate (based on an unofficial transcript):
The theory behind combining GET and CBT for ME is to use CBT to convince people with ME that they are not physically ill and to use GET to reverse their physically deconditioned state. We know that this is entirely false [and] unproven and cannot be reconciled with the 2015 Institute of Medicine report on ME/CFS, nor can it be reconciled with findings of biomedical research on ME…Why did CDC sponsor an educational course for physicians that is so profoundly incorrect, stigmatizing and rife with misinformation? And two, when will CDC ensure that all errors about ME/CFS are corrected so that they are based on science and not…whatever opinions the author based them on?

Here’s a key passage from that CME course:

Preventing physiological deconditioning in persons with ME/CFS is important, but it is questionable whether this exercise-intolerant population benefits from exercise programs. One frequently studied rehabilitative approach is GET, which is often paired with cognitive behavioral therapy. With GET, patients complete planned physical activity regardless of symptoms, with the goal of gradually increasing activity levels and functional ability. A meta-analysis of randomized controlled trials (RCTs) of GET determined that it improves sleep, physical function, and general health in some persons with ME/CFS without serious adverse effects However, the included RCTs have been criticized for applying definitions of ME/CFS that did not require PEM, excluding sicker patients, and having limited reporting of adverse events. In surveys, approximately half of persons with ME/CFS associated GET with worsening symptoms or triggering PEM If GET is going to be initiated, it must be done very gradually to avoid exacerbations of symptoms.”
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