Trial By Error: From UK’s National Health Service, “Your COVID Recovery”

By David Tuller, DrPH

In the UK, the National Health Service has launched a website called “Your COVID Recovery,” part of its strategy for coping with the after-effects of the coronavirus pandemic. This effort is geared toward “supporting your recovery after COVID-19.” In other words, it appears to be targeting the “long-haulers,” 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 “post-Covid syndrome.”

Unfortunately, the site does not mention—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 stuff—stuff that grandma might have suggested. It’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 don’t need when they’re recovering, because in general regaining strength happens naturally. Good advice is most important when things go wrong—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 illness—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.

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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 wouldn’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 “fatigue” and “getting moving again,” present a so-called “biopsychosocial” 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 clinicians—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 “What makes post COVID fatigue last a long time?” posits a range of non-organic causes for the symptom:

In 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.”

The section on “Getting Moving Again” 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 don’t know enough at this point, for example, if the following argument based on the deconditioning model makes sense:

“By 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.”

Or this: “Remember the less you do, the less you will want to do and the less you will be able to do.” Or this: “You 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.” 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 doesn’t work out for you and you suffer a relapse, don’t blame NHS. As Your COVID Recovery makes sure to alert readers: “You are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself.”

Comments on this entry are closed.

  • Dgroov 5 August 2020, 6:36 pm

    “You are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself.”

    Stay away….from malpractice

  • CT 5 August 2020, 6:37 pm

    There was a short item about ‘Long-Covid’ on Channel 4 News tonight and it sounded like sufferers are getting really fed up of being told that it’s all in their heads by their doctors. But some of them ARE doctors, so you never know, the medical profession may start to wake up and acknowledge the misery that they’ve inflicted on ME patients for decades.

  • Alicia Butcher Ehrhardt, PhD 5 August 2020, 9:33 pm

    Ignorance-based recommendations for people who’ve already suffered enough! From people who have NOT studied a reasonable sample of long-haulers for a reasonable period of time – it just hasn’t been around long enough.

    And they deliberately ignore the one thing which might help, the knowledge base on ME that is READILY AVAILABLE worldwide, and based on studying many people with a very similar illness to post-covid problems for many years.

    That disclaimer is insult added to injury.

  • CT 6 August 2020, 2:12 am

    There’s an article about ‘Long-Covid’ in today’s Daily Telegraph -https://www.telegraph.co.uk/politics/2020/08/05/mps-hear-aftereffects-coronavirus-can-linger-months-cause-lasting/ .

  • Paul Scoffield 6 August 2020, 7:19 am

    Greetings and felicitations. I rather despair at the ongoing attention to Covid and the innate Ignorance that belittles M.E . Every physical reality of the the immune status of a body with a long term auto immune condition cries out for total rest. The opposite of which is long term damage and embedding of conditions. The problems of M.E and the redundant term CFS are too many and too wild to mention. The psychological approach was always moronic based on core ignorance from day 1. I was often abused under the NHS and once had a rather rotund and unfit registrar tell me he didnt want me or my sort on his ward. Strangely enough I did not know what he meant by my sort…as I have always been very much an individual. And again Nor did I wish to be there either. Thus I was somewhat offended at his casual gibbershit. Especially as before embarking on my imaginary illness I was a 17st runner of mountains (upto 30 miles)….Thus never fat and understood the concept of making an effort, eating properly and treating myself as a coherent well balanced human being. The transition from that to lying in bed unable to talk and unable to get ot the loo…is a shock. Despite that and for the next 16 years I never got down or depressed….not in my nature and never was. The mount of mis or dis information on this subject is insane. And there is no explanation other than professional insanity. I cured myself with my own regime which was neither simple nor short..Thus these days I just have a damaged ticker so still cant buy trainers and go for a jog. Now of course we have another element to what will be entwined and defined as similar…despite the lack of any comprehension of what they are comparing.

  • Ruth Behan 6 August 2020, 10:11 am

    I am an ME sufferer and my dearest wish is to regain fitness but time and time again I find that pushing my body and mind to more than modest exertion results in loosing all the slow progress i have made. I advise people to get a heart rate monitor so that they can get a good idea of how much their body can do without getting post exertional malaise and having to go back to extended resting. I read in the New scientist that research has shown that the immune system makes antibodies against a substance called pyruvate dehydrogenase which is vital for energy production in the mitochondria of cells.

  • Deborah Waroff 6 August 2020, 12:41 pm

    Ruth, the Open Medicine Foundation has also presented work on possible role of pyruvate in down-regulated energy cycles of ME patients.
    David, I read an article reporting that exceptionally severe Covid 19 cases often have in common especially dysfunctional immune function — not just a flood of cytokines, but elevation of the wrong bits of the immune system for fighting viruses, and so on. Obviously in long-haul Covid there are likely to be these or other physiologic anomalies — even persistent virus in hidden tissue — that have yet to self correct. I am horrified that the NHS is once again, as with ME, so anti-science as to blame the victim for faulty behaviours.

  • Gay Lyon 7 August 2020, 7:25 pm

    What happened to evidence-based medicine at the NHS? They are offering medical advice to long-haul Covid patients without any basis in science. There has been no research as to why some patients don’t recover or even epidemiological studies on what their symptoms are. So the NHS advice is pure conjecture.

    If they are going to give advice that is simply best-guess, wouldn’t it be sensible to use what works on the disease which long Covid most closely resembles, myalgic encephalomyelitis? Instead, they are suggesting care which is specifically contraindicated for ME, and thereby risking making “post Covid syndrome” significantly worse.

    I guess “first do no harm” got thrown into the same bin as evidence-based medicine.

    What would be wrong with telling long Covid patients, “Look, it’s a brand new virus and we really don’t know yet why some people aren’t recovering. We believe you, but we will need to watch, study it, and see what happens. In the meantime, you should probably listen to your body, rest when you’re tired, and do your best to eat healthy foods”?