Trial By Error: UK Docs Speak Up on Long-Covid; Mayo Shifts Gears (a Little)

By David Tuller, DrPH

Doctors in UK urge caution on long-Covid exercise advice

Despite BMJ’s current dereliction of key editorial oversight responsibilities, it has provided a forum for members of the medical community with Covid-19 and post-Covid symptoms to express their strong views.

The reference to current dereliction of key editorial responsibilities involves a case I and others have raised repeatedly with BMJ in recent months. The concerns relate to a study of cognitive behavior therapy and music therapy for chronic fatigue in adolescents after acute EBV, which was published in April by BMJ Paediatrics Open. More than three months ago, four colleagues and I alerted the journal itself, along with BMJ’s editorial leadership, that one of two peer reviewers flatly stated in his review that he had not read “beyond the abstract”—in other words, he did not actually read the study.

Even before we sent our letter, a sharp ME/CFS patient had previously highlighted multiple methodological problems with the paper in a cogent and persuasive rapid response. Among other issues, the study was described in the protocol as a fully powered trial but it was published—falsely—as if it were designed as a feasibility study seeking data for a fully powered trial. Given this indisputable evidence of questionable reporting of results and a broken peer review process, it is unclear why the journal and BMJ’s editorial leadership have so far refused to take action on this problematic paper—especially at a time when people around the world are desperately seeking reliable information about post-viral fatigue.

Putting aside that issue for the moment, BMJ deserves credit for posting physician Paul Garner’s series on his personal journal of illness and his struggle to recover. BMJ has now posted a letter headlined “From doctors as patients: a manifesto for tackling persisting symptoms of covid-19.”

The letter, signed by dozens of doctors in Britain, emphasizes how much we don’t know about the coronavirus and its long-term impacts. It makes the critical point that testing shortages and inadequacies, especially in the early stages of the epidemic, mean that many who had Covid-19 do not have a positive viral test. “Thus, adherence to positive test results as a criterion for access to medical services or specific covid-19 sick pay arrangements with employers is unacceptable in the context of a clinical diagnosis of covid-19,” they write.

The letter does not explicitly mention the symptom of post-exertional malaise, although it draws attention to cardiac inflammation among long-Covid patients. Appropriately, the letter warns against a uniform approach to treatment and sounds a welcome cautionary note on the role of exercise. In particular, it references the statement from the National Institute of Health and Care Excellence, which advised that the standing guidance for GET in ME/CFS should not be assumed to apply for post-Covid symptoms:

“A reliance on “one size fits all” online rehabilitation services risks serious harm to patients if pathology goes undetected and is a missed opportunity for clinicians to develop their experience with the sequelae of this virus that is set to be an ongoing presence in our clinical practice. Where current guidance has been issued, such as the statement from the National Institute for Health and Care Excellence cautioning against graded exercise therapy in the context of covid-19, it should be communicated quickly to clinicians on the front line.”

The whole thing is well worth reading.

**********

Mayo’s shifts gears (a little bit, anyway)

Patients—and me—have been blasting the Mayo Clinic for years for its adherence to the precepts of the CBT/GET ideological brigades. For unclear reasons, this prestigious medical center has chosen to undermine its sterling reputation for excellence by promoting discredited strategies in treating patients with what it has continued to call chronic fatigue syndrome. My most recent post about “Mayo’s Crappy Website” was last December.

Some of the blame for Mayo’s recalcitrance and resistance to change can probably be assigned to the US Centers for Disease Control and Prevention, which has routinely failed in the past to exert much effort ensuring that anyone actually knew that it had changed its ME/CFS recommendations. When the CDC made the change in the summer of 2017, it did not announce its decision. I was alerted to it by a social media post. As far as I know, its response to me was the first public acknowledgement that CBT and GET were no longer the recommendations for treating the illness. While the agency has since taken some positive steps to disseminate more appropriate information, it has refused to explain or apologize for its longstanding support of PACE and its bogus findings.

So Mayo has finally fiddled with the language on its website for what it continues to call CFS. The immediate decision seems to have been prompted by a tweet last January chastising Mayo for its harmful and outdated recommendations. In any event, new version is definitely an improvement, although it still falls short on many aspects.

The new version is here. The older version is here. Readers can make their own assessments. But one key change is the removal of the following passage in a section on therapy:

The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.

  • Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
  • Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen

That egregious advice has been replaced with this:

Many people with chronic fatigue syndrome benefit from:

  • Counseling. Talking with a counselor can help build coping skills to deal with chronic illness, address limitations at work or school, and improve family dynamics. It can also be helpful for managing depression.
  • Addressing sleep problems. Sleep deprivation can make other symptoms more difficult to deal with. Your doctor might suggest avoiding caffeine or changing your bedtime routine. Sleep apnea can be treated by using a machine that delivers air pressure through a mask while you sleep.
  • Exercise. Aggressive exercise regimens often lead to worsened symptoms, but maintaining activities that are tolerated is important to prevent deconditioning. Exercise regimens that start at a very low intensity and increase very gradually over time may be helpful in improving long-term function.

This language remains problematic. For one thing, it recommends what is apparently a kind of GET-Lite. It warns only against “aggressive” exercise regimens—whatever that means. I am not aware of serious evidence that any exercise regimens based on the notion of deconditioning lead to positive outcomes in chronic fatigue syndrome.

Perhaps these exercise regimens lead to positive outcomes in cases of idiopathic chronic fatigue, or fatigue secondary to depression, anxiety and other mood disorders. But this Mayo site is supposed to be about the clinical entity misnamed chronic fatigue syndrome—not about chronic fatigue.

Hey Mayo–keep up!

Comments on this entry are closed.

  • Steve Hawkins 15 September 2020, 9:27 pm

    Mayo’s (and NICE’s) language is still nauseatingly patronising though! Who do they think they are addressing? Is this the kind of language they would use if actually speaking face to face with the CoViD-19 recovering doctors in the first part of the post?

    I somehow think not! Patients are not all kindergarten children. When are we ever going to be as adults, just as capable of reasoning and logic as people who chose to study medicine while we used our brains in our own fields?

    It’s the insufferable patronising superciliousness of the whole concept of CBT (‘Clever Bugger Twaddle’) that really irks so much, when authorities who should know better are taken in by it.

  • Alicia Butcher Ehrhardt, PhD 15 September 2020, 9:53 pm

    Mayo needs to MOVE to the truth, and NOT push ‘start at a very low intensity and increase very gradually over time’ UNLESS they also point out that the increase may not be possible at all, and the increase may be capped at what the patient can endure without crashing. Long term without crashing.

    I do as much as I can – very carefully – and only occasionally. I currently stretch in a warm pool for a half hour twice a week. That is too much for the days I do it, but sustainable over months without making me crash. So far. For now. Because I want to keep joints and muscles from getting worse. Any time I need to, I skip it. Occasionally I ride an adult tricycle for a half-hour. Instead of one of the pool dips – and for the same reason: keeping muscles from losing it completely.

    There is no way I’m going to ‘increase over time’ – it’s been decades of carefully finding the limits so I can even do this much. Fix me, and I’ll be delighted to slowly work back to human.

    But the point I want to make is that Mayo is garbage in my mind BECAUSE it has this nonsense in its plan. In the one area I’m an expert (MY ME/CFS), they are WRONG. So I trust NOTHING else they write or stand for.

  • CT 16 September 2020, 1:35 am

    (Who knew that doctors could also be patients, aren’t they gods and therefore invulnerable?) Anyway, according to those doctors who now speak as patients, death should not be the only outcome that is being measured in relation to Covid-19. They should really watch this–https://www.youtube.com/watch?v=DqDTAHUMnq4 . It strikes me that it’s a bit late in the day for UK doctors to decide that the alleviation of chronic suffering is worth fighting for. They’ve had decades to challenge the political moves in UK medicine to undermine and nullify patient-reported experience of ongoing ‘unexplained’ symptoms and suffering, but better late than never I suppose. Pull out the stops then, let’s have all those expert multidisciplinary teams working on the problem, (even if the patients have had negative test results), because our NHS heroes deserve so much better. If the powers that be won’t listen to bog-standard patients then maybe they’ll listen to A-list patients instead. You never know, in time the rest of us may get some crumbs that fall from the NHS table.

  • CT 16 September 2020, 2:32 am

    Just one more thing – in the UK we’re taught from an early age how to wait our turn ‘patiently’ (!) in a queue, it’s what British people do. So I say to those doctors who are now suffering with Long-Covid – stop trying to jump the queue. In the great scheme of things you’ve been ill for only a short time. There are people who’ve been suffering horrendously with chronic pain, fatigue and other symptoms for years and decades with no help from the NHS who are way ahead of you in the queue and should be considered first. Why do you think that you’re special cases?

  • AB 16 September 2020, 9:17 am

    It might be because I have ME and not “chronic fatigue” but I never found that gentle exercise gradually increased over time led to any increase in functioning or anything useful in the end. The constant trying left me less able to physically function and carry out household, financial, self care (i.e. bathing) tasks or to maintain contact with family and friends.

    I think that the Mayo have still got this wrong.

    What happens to me is that the even gentle exercise comes out of my total energy and strength allowance for that day. I can slowly increase the length of a walk over a month but only at the expense of all the other things I could be doing. Getting to the peak activity level never led to any tangible benefits.

    During any activity buildup I had my normal recurrent viral attacks which leave me bed bound and then house bound as I recover. Trying to maintain a daily slow walk under these circumstances leads to a sharp and long term loss of physical function and an increase in ME symptoms. Stopping and starting leads to frustration and the dawning knowledge that I cannot move past a point and that getting there is increasing the viral attacks.

    I tried a slow swimming regime once when I had access to an open air pool and was able to build up the total number of strokes but the sinus / chest /ear infections and flus increased and there were weeks in between being well enough to walk the short number of steps to the pool. The more I tried the weaker I got. There was no safe baseline of gentle activity. Stopping and starting wasn’t returning anything useful.

    A supposed increase in “conditioning” wasn’t translated into an increase in my functioning. It was a pointless waste of my time. I could slowly increase the steps walked but not enough to be able to shop or dance or cook meals or talk on the phone, or work or bathe or sing without crashing as usual.

    The best way of increasing my functioning so I could maintain enough strength was to rest horizontally as much as I could. Resting led to less ME and viral symptoms and I had a better life because I could do more tangible useful things.

    There is a glass ceiling with exercise and activity that I found impossible to move beyond regardless of how gentle or slow the buildup was. The constant trying left me less able to function in my everyday tasks. The amount of gentle activity I could tolerate one day was impossible the next.

  • Lisa Petrison, Ph.D. 16 September 2020, 10:34 am

    I do not think the changed language is much of an improvement at all.

  • jimells 17 September 2020, 1:43 pm

    “hypersensitivity to exercise”

    The irony is that for a subgroup this is may be an accurate description. For me, mild activity, even just standing, causes symptoms like itching all over. For me, anti-histamines stop the itching and reduce many other symptoms as well. They have made the difference between being homebound and bedbound. But I don’t have hives so the idea that mast cells are behaving badly is simply dismissed out of hand, with no investigation whatsoever. I had to work out completely on my own what antihistamines and dosage to use.

    Now there is a study that confirms the idea that exercise can indeed activate mast cells in a cohort of patients with mastocytosis:

    “We have presented evidence … consistent with the conclusion that physical activity can induce mast cell mediator release.” [1]

    I’m not suggesting that ME is a mast cell disorder; rather, I suggest that ME involves mediator(s) that (also?) activate mast cells in a subgroup, and that this causes symptoms that can be alleviated, at least somewhat, if physicians would, you know, do their job. And stop reading crap on Mayo’s website.

    I can’t remember why anymore but I speculate that extracellular APT may be part of the story. I vaguely recall that Naviaux’s theory involves extracellular APT and mast cells have APT receptors.

    We don’t know from this study if their results are generalizable to other cohorts, and the number of patients is tiny. If researchers would quit assuming that mast cells are “the appendix of the immune system” [2] and do a serious investigation of mast cells in ME patients then maybe the field would move ahead a tiny bit.

    [1] Kulinski et al; Elevation in histamine and tryptase following exercise in patients with mastocytosis; https://sci-hub.se/https://doi.org/10.1016/j.jaip.2018.07.008

    [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2193441/

  • lucie webb 18 September 2020, 3:32 am

    Hi Jimells, are you aware of Jackie Delaney’s website in Australia re Systemic mastocytosis overlap with parasitic infection, see her mast cells and their important role in parasitic infections.https://www.badbugs.org/ConsequencesOfMisdiagnosis.html
    She gave me free advice re a dientamoeba fragilis infection.
    Another thing that helped which might have something to do with Dr Systrom’s discovery of ‘pre-load failure’ was taking masses of digestive enzymes. My Danish nutritional therapist got me doubling up on these with every meal and the permanent pain in my calf muscles disappeared when I was taking lots. But it is modern dentistry’s failure to link up with how teeth/jaws misalignment affects the rest of the body and prevents the body cleaning itself at the cellular level that is giving us so many problems. Doctors, especially mind doctors must never think they are superior to dentists, . When mental health docs learn to look into their patients mouths to assess their mental state we will be getting somewhere. You don’t buy a horse………….. Can extraction orthodontics cause bulimia? Read Pamela Blevins book ‘Song of Pain and Beauty’ and consider what the mental health services in U.K. 100 years ago did to Ivor Gurney.

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