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.”

The CDC should not be perpetuating the stupid notion that there is some special link between ME/CFS and deconditioning. Patients with ME/CFS might be deconditioned, like anyone with a disabling chronic illness, but deconditioning does not cause their symptoms. Patients need treatments for what is causing their symptoms. They do not need treatments to prevent or reverse deconditioning.

The claim that addressing deconditioning is especially “important” in this illness comes straight from the discredited paradigm promoted by the GET/CBT ideological brigades, including the authors of the PACE trial. It is hard to understand why this evidence-free notion is still appearing in taxpayer-funded materials designed to educate medical professionals.

The CME passage mentions that the relevant trials “have been criticized for applying definitions of ME/CFS that did not require PEM, excluding sicker patients, and having limited reporting of adverse events.” The passage does not mention that the core study in question, the PACE trial, also included such rampant outcome-switching that some participants met outcome thresholds at baseline—a feature that should have prevented any journals from publishing the results.

PACE, the Cochrane reviews and related studies purport to “prove” the effectiveness of GET and CBT. But whether this research meets standard definitions of acceptable science should no longer be up for debate—certainly not at the CDC, which is supposed to be the world’s leading public health agency. (Well, it has lost that reputation and its hard-earned credibility, thanks to Trump. But let’s assume we’re in a normal world.)

Given that the CDC’s seal of approval granted international legitimacy to the delusion that people’s devastating symptoms were caused by deconditioning combined with unhelpful beliefs of having an organic illness, the agency has an obligation to set the record straight on why it accepted this flawed paradigm for so long. As far as I can tell, it has never taken that necessary step.