From Jaime Seltzer over on Bluesky:

Please call for this one, guys, this is a horrific turn. There is something at the core of these folks that cannot accept patient narrative as a source of real data. They revert to default tropes about exercise rather than listening, or reading up-to-date studies.

>>Bluesky post from DoNoHarm BC: Advocacy alert ‼️ New Canadian draft recommendations for Long Covid are out, & they include concerning guidance to EXERCISE to prevent Long Covid, & to use CBT as a treatment. Have your say by Wednesday Nov 27 at 8:45 pm Pacific / 11:45 pm Eastern

So I got to work and submitted something. I responded with comments on four of the eight draft recommendations (specifically, #2, #5, #6, and #8). Below are the relevant sections of my submission to the formal consultation exercise (the full set of survey items can be viewed here).

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Regarding Draft Recommendation #2. (“The CAN-PCC Collaborative suggests exercise in adults with acute COVID-19 infection to prevent post COVID-19 condition (conditional recommendation, very low certainty in the evidence)…”)

As mentioned, the pertinent evidence is of very low certainty. There is considerable evidence that exercise interventions exacerbate adverse symptoms in many people with long COVID. Exercise is contraindicated with post-exertional malaise (PEM), which is prevalent in long COVID. Exercise interventions have been shown to produce adverse outcomes in many patients with ME/CFS, and have been removed from the UK’s treatment guidelines for ME/CFS (the new evidence-based guideline explicitly requires that graded exercise therapy not be offered to these patients under any circumstances). NICE, the body responsible for UK guidelines, based this requirement on a thorough review of more than 100 studies, which found no evidence to support the use of exercise in this way. Given the similarities/overlap between ME/CFS and long COVID, the draft recommendation to suggest exercise in a long COVID context is extremely hazardous.

In addition, it must be acknowledged that while evidence is negative, such exercise interventions are nonetheless widely offered in the unregulated (private) market, by unscrupulous providers. Some such providers occupy mainstream positions in academia and healthcare. Out of an abundance of caution, the CAN-PCC Collaborative should be extremely cognizant of the risk of attempted regulatory capture by providers of exercise therapies, and the history (e.g., in the UK) of lobbying by such providers of regulatory bodies.

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Regarding Draft Recommendation #5 (“The CAN-PCC Collaborative suggests the use of tools (i.e., Post-COVID-19 functional status scale, and EuroQol-5D [EQ-5D]) to evaluate adults with suspected post COVID-19 condition and dizziness and/or fatigue…”

The use of psychometric measures of psychological, perceptual, or (so-called) functional states carries the risk of reinforcing unfortunate stereotypes about long COVID, such as that the condition exists “all in the patient’s mind” or that the condition is precipitated by (and thus reflects) a patient’s personality or cognitive style, and thus is not a legitimate physical malady. Based on the history of similar conditions (e.g., ME/CFS, fibromyalgia, migraine, MS, etc.), this risk exists simply by virtue of such measures being taken. Moreover, such history suggests that the use of psychometric measures in this way is highly gendered, and is both propelled by and contributes to stereotypes of women patients as psychologically fragile and thus prone to (psychogenic) symptoms. For persons of all genders, anything that reinforces a stereotype of long COVID as a psychological state risks deflecting patients onto an irrelevant (e.g. psychiatric) treatment pathway and away from appropriate medical care.

Given these risks, psychometric measures of psychological variables should only be recommended where there is robust evidence of their central role in pathogenesis. There is no such evidence for this in long COVID.

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Regarding Draft Recommendation #6 (“Caregivers of people with post COVID-19 condition should seek psychoeducational support for their well-being and caregiving capacity”)

Evidence-based caregiver support is highly recommended and would be a welcome addition to any proposed guideline.

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Regarding Draft Recommendation #8 (“In individuals with post COVID-19 condition and post-exertional malaise (PEM), the CAN-PCC Collaborative suggests cognitive behavioral therapy in addition to pacing”)

CBT is one of many forms of psychotherapy that can be helpful for a patient presenting with mental health concerns. However, CBT is not likely to be effective in treating long COVID. Indeed, NICE in the UK has established that the research on CBT demonstrates no evidence that CBT is effective in treating ME/CFS, despite more than 100 studies having been reviewed.

There are grounds to suspect that CBT is, in fact, likely to be counterproductive in several respects. Given the aims of CBT, which focus on getting patients to recalibrate their frames of reference (e.g., to lower their expectations), it is probable that many patients will falsely report symptom improvement over time in the absence of any real physical change, thereby generating misleading feedback on any actual medical treatment. It is notable that in the PACE trial for ME/CFS, of those (relatively few) patients who reported increased personal well-being after CBT, none exhibited improvements in physical fitness, strength, stamina, or mobility, and all remained debilitated with none able to return to work or study post-treatment.

The use of CBT as a recommended treatment also serves to reinforce the adverse stereotype of long COVID patients as persons suffering a psychological illness of their own making. So, in sum: CBT is ineffective at treating long COVID; CBT will likely generate misleading feedback on (medical) treatment outcomes; and CBT will serve to stigmatise patients.

As with exercise interventions (discussed above), CBT is nonetheless commonly offered to patients with long COVID (and similar conditions), by practitioners or even physicians who for whatever reason see fit to disregard or misrepresent the research literature (much of which they have produced themselves). There is also a clearly discernible history of such parties seeking to lobby regulatory bodies. Once again, the CAN-PCC Collaborative should seek to guard against such intrusive lobbying in order to ensure that long COVID patients are protected from exploitation and provided only with interventions for which there is strong evidence.

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END (Let’s see what happens next…)