By David Tuller, DrPH
In the UK, the National Health Service has launched a website called â€œYour COVID Recovery,â€ part of its strategy for coping with the after-effects of the coronavirus pandemic. This effort is geared toward â€œsupporting your recovery after COVID-19.â€ In other words, it appears to be targeting the â€œlong-haulers,â€ as those experiencing lingering symptoms after an acute bout of Covid-19 have been called. These prolonged medical complaints have been given the collective name of â€œpost-Covid syndrome.â€
Unfortunately, the site does not mentionâ€”unless I missed it, which is always possible–the salient fact that many people currently reporting such symptoms did not obtain a coronavirus test when they were sick because of supply shortages and restrictions on who qualified to get one. Furthermore, the accuracy of the coronavirus tests have varied, depending on the protocol for obtaining a sample, the point during the illness cycle at which it was taken, and other factors. Some patients who have been presumptively diagnosed by clinicians with Covid-19 have tested negative for the virus.
I’m not dissing the entire effort. People are desperate for information. The site does provide caveats about the many unknowns regarding the long-term course of illness and the ultimate prognosis. It provides some helpful resources, including an overview of the range of possible post-Covid symptoms–problems with taste and smell, persistent cough, musculoskeletal pain, and so on. That’s all good.
And much of the advice in Your Covid Recovery is generic, common-sense stuffâ€”stuff that grandma might have suggested. Itâ€™s the kind of guidance that would likely be offered for the fatigue, achiness and other complaints that can follow a bout of influenza or other viral illnesses. The kind that most people donâ€™t need when theyâ€™re recovering, because in general regaining strength happens naturally. Good advice is most important when things go wrongâ€”like when a significant minority of people who have an acute viral illness remain somewhat or very impaired and are then diagnosed with myalgic encephalomyelitis, chronic fatigue syndrome, ME/CFS or some other variation.
(Important to note: People also meet some of the criteria used for this illness or cluster of illness after exposures to non-viral pathogens, toxic substances and other biological insults, or in some cases after no reported exposures at all. In the current context, the relevant trigger is a virus.)
For some reason, the CBT/GET ideological brigades theorized decades ago that these patients with prolonged symptoms do not get better because they sabotage their own recovery. Per their theory, such patients, for a variety of psychological and social reasons, get stuck in the recovery process. The patients are said to harbor false convictions that biomedical abnormalities limit their ability to exert themselves. Thus, they remain sedentary and develop significant deconditioning, causing further fatigue, disrupted sleep, cognitive deficits and other problems.
According to this paradigm, cognitive behavior therapy and/or graded exercise therapy should be effective treatments for curing patients. These interventions were tested in the much-touted PACE study and proved to be ineffective for treating the illnessâ€”despite the bogus results based on manipulated data that were published in The Lancet in 2011 and in other journals.
As I have said over and over, the PACE trial is a pile of crap, and those up and down the British medical, academic, and government hierarchies who defend it are engaged in serious emperor-has-no-clothes-ism. It’s time they stopped deluding themselves about the quality of this purported “science,” faced reality, and put their clothes back on.
The NHS site delivers its messages with a large dose of encouragement, as if recovery is more or less assured for most patients. If that were the case, then the guidance probably wouldnâ€™t be needed. Unfortunately, as the site itself makes clear, a significant number of people who have battled acute Covid-19 continue to experience persistent problems.
And notwithstanding some useful information, some sections, like those on â€œfatigueâ€ and â€œgetting moving again,â€ present a so-called â€œbiopsychosocialâ€ framework and approach that seems lifted from the PACE playbook, with an emphasis on the “psycho” and “social” rather than the “bio.” The text makes little mention of possible underlying abnormal physiological processes that could be causing the ongoing fatigue. These sections do not mention possible links with ME/CFS, although these possible links have been widely noted by health officials and experienced cliniciansâ€”including some who themselves have suffered serious post-covid symptoms.
Given that there is no mention of ME/CFS, there is also no mention of the core symptom of post-exertional malaise. If post-covid syndrome patients do in fact end up meeting ME/CFS diagnostic criteria and suffering from post-exertional malaise, some of the advice in this NHS material could cause them significant harm. It is worth noting–since Your COVID Recovery does not–that the UK’s National Institute for Health and Care Excellence has explicitly warned that the recommendation for graded exercise therapy in its 2007-but-still-active CFS/ME guidance is not indicated at this point for post-Covid syndrome.
Despite the lack of current understanding of and evidence about post-Covid syndrome, a typical passage in Your COVID Recovery, in a section headlined â€œWhat makes post COVID fatigue last a long time?â€ posits a range of non-organic causes for the symptom:
â€œIn some people, different things contribute to the fatigue and make it last a long time. Low levels of physical activity, a disturbed daily routine, poor sleep patterns, demanding work, caring responsibilities, low mood, anxiety and stress can all make fatigue worse.â€
The section on â€œGetting Moving Againâ€ is based on the presumption that the fatigue associated with post-Covid syndrome is related to deconditioning, and it suggests that patients can therefore overlook or ignore a resurgence of symptoms after exertion. Perhaps the advice is appropriate for some or even many people with fatigue following acute Covid-19. But we simply donâ€™t know enough at this point, for example, if the following argument based on the deconditioning model makes sense:
â€œBy being active and starting some exercise you become stronger and fitter. You may notice your tiredness increase and some breathlessness at first but these should improve the stronger you get; this is a normal response to doing more exercise for all of us.â€
Or this: â€œRemember the less you do, the less you will want to do and the less you will be able to do.â€ Or this: â€œYou should aim to build up to 30 minutes of activity at least five days a week, but this is not going to happen at the beginning of your recovery.â€ Again, no mention that this goal will possibly or likely not work for everyone–not only just at the beginning of their recovery, but for an extended period of time.
In the absence of sufficient data specifically about post-Covid syndrome, it is reckless for health authorities to make recommendations based on unwarranted and unsupported assumptions. In any event, if the get-up-and-go advice doesnâ€™t work out for you and you suffer a relapse, donâ€™t blame NHS. As Your COVID Recovery makes sure to alert readers: â€œYou are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself.â€