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A patient who recovered from post-COVID myalgic encephalomyelitis/chronic fatigue syndrome: a case report, 2023, Oka

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by SNT Gatchaman, Mar 2, 2023.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    A patient who recovered from post-COVID myalgic encephalomyelitis/chronic fatigue syndrome: a case report.
    Oka T

    Background: Some patients infected with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) complain of persistent fatigue, dyspnea, pain, and cognitive dysfunction. These symptoms are often described as "long COVID". Whether a patient with long COVID might develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is of interest, as is the treatment and management of ME/CFS in a post-COVID patient. Here I report a patient, who, after an infection with SARS-CoV-2, developed ME/CFS and recovered after treatment.

    Case presentation: The patient was a previously healthy 55-year-old woman who worked as a nurse and became ill with COVID-19 pneumonia. She then presented with severe fatigue, post-exertional malaise, dyspnea, pain, cognitive dysfunction, tachycardia, and exacerbation of fatigue on physical exertion, which persisted for more than 6 months after her recovery from COVID-19 pneumonia. She was bedridden for more than half of each day. The patient was treated from multiple perspectives, which included (1) instructions on eating habits and supplements; (2) cognitive and behavioral modifications for coping with physical, emotional, and cognitive fatigue; (3) instructions on conditioning exercises to improve deconditioning due to fatigue and dyspnea; and (4) pharmacotherapy with amitriptyline and hochuekkito, a Japanese herbal (Kampo) medicine. The patient made a complete recovery after completing the prescribed regimen and was able to return to work as a nurse.

    Conclusions: To the best of my knowledge, this is the first detailed report on a patient infected with SARS-CoV-2 followed by long COVID with the signs/symptoms of ME/CFS who recovered after treatment. I hope this case report will be helpful to health care practitioners by its presentation of some of the therapeutic options for alleviating disabling signs/symptoms in patients with post-COVID ME/CFS.

    Link | PDF
     
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  2. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  4. Hutan

    Hutan Moderator Staff Member

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  5. Hutan

    Hutan Moderator Staff Member

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    Just as an aside:
    That quote illustrates the difficulties with the 'sleep problems' or 'non-restorative sleep' criteria of the more demanding ME/CFS criteria. The patient seems to have PEM; her illness sounds very much like ME/CFS. And yet, different interpretations of the sleep criteria can potentially see someone excluded from a CCC compliant diagnosis (and probably IOM and ICC compliant diagnoses too). Sometimes, I wake up in the morning noting that I feel awful, but most days, it's just more of the same, and often an afternoon sleep is restorative, in that I can get going again, to make dinner or something. I think 'sleep issues' as part of ME/CFS criteria creates unnecessary confusion.
     
  6. Hutan

    Hutan Moderator Staff Member

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    There's an awful lot of fluff there, with not one, but two vicious cycle diagrams and a lot of what I find to be awfully patronising. Perhaps the clinician was able to offer some useful advice, although we just have their word for it.


    Did the patient actually improve? I think that's arguable. She did report lower fatigue at the end, but she seemed to be learning how to manage her illness, as most of us do over time, regardless of whether we are given instructions about how to improve our coping approaches. If anything, the increase in heart rate on standing got worse. Much was made about axillary temperature, suggesting what I think is quite a normal temperature initially was high, and that the subsequent decrease was indicative of an improvement in health. To the contrary, the final axillary temperature might be tending towards being too low, and, in any case, one measurement doesn't prove much.

    So, the conclusion that the woman had recovered was based pretty much on her self-reported symptoms, while she was still not working. At the final appointment , she reported that she was planning to return to work, but we don't hear how that went - and that would be a better test of whether she had recovered. I myself reported to my GP at one point that I was better, I hoped it was true, and even got her to sign a form that I had recovered, so that I would be allowed to complete a project I was working on (which I never did finish). My son returned to school full time - and ended up worse than he had ever been.

    So, I'm not convinced the woman permanently recovered; the information we are given seems compatible with someone learning how to manage their illness, and perhaps recovering a bit naturally over time, perhaps reporting improvements out of politeness and wishful thinking. If you were a clinician looking to promote your clinic, the logical thing to do is write the paper about recovery before the patient tries to resume their pre-illness activities.

    That said, is there anything in the treatments?
    I think we can discount the fluff about a good diet and vitamin C; too many other people have been there and done that, with no benefit. But I think it might be worth looking at amitriptyline and hochuekkito, to see if there is any reason to think they might be useful. (Not that I'm suggesting trying them; I assume amitriptyline at least could be dangerous.)
     
    Last edited: Mar 2, 2023
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  7. Sean

    Sean Moderator Staff Member

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    To date, there is no single treatment that can cure every patient with ME/CFS,

    To date, there is no specific treatment for ME/CFS.
     
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  8. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Apparently there's psychogenic fever. From the same author —

    Psychogenic fever: how psychological stress affects body temperature in the clinical population (2015)

    and different Japanese authors, recently referencing that paper —
    Psychogenic fever and postural tachycardia syndrome among school-aged children and adolescents with fever of unknown origin (2022)

    the latter concluding with:
    Those delicate teenage girls... This is the first time I've come across PUO (pyrexia of unknown origin) which is a common childhood referral problem being explained with MUS-like psychologisation.
     
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  9. Hutan

    Hutan Moderator Staff Member

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    Screen Shot 2023-03-02 at 4.08.56 pm.png

    Axillary temperature at first visit 37.2 degrees
    Axillary temperature at last visit 36.3 degrees

    A lot more weight than seems warranted is given to two measurements of temperature, that really aren't very extraordinary.

    I think we may have commented about Oka before, the psychogenic fever idea rings a bell.
    Ah yes, here:
    Clinical effects of wasabi extract containing 6-MSITC on myalgic encephalomyelitis/chronic fatigue syndrome: an open-label trial 2022 Oka et al
    Oka (I'm assuming it's the same one) has a track record of publishing with a Japanese traditional medicine company.
     
    Last edited: Mar 2, 2023
  10. Milo

    Milo Senior Member (Voting Rights)

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    Axilla temperature is the least reliable measurement of them all. It is typically only performed on newborns.
     
  11. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    ME/CFS is a very variable condition between and within patients. I am sure we can all share anecdotes of people dramatically cutting back their activity levels and seemingly improving dramatically, perhaps attributing that improvement to whichever intervention they were doing at the time, be it diet, gentle exercise, psychotherapy, positive thinking.

    One I cite is someone who went on holiday on a Greek island and felt much improved, so she left her job and sold everything she had to raise enough money to return to the island for over six months. With a healthy Mediterranean diet, gentle walking, swimming, lots of rest and sunbathing she believed this resulted in a total recovery. Then returning to full time but temporary job in the UK, within a few days she experienced a major relapse leaving her unable to work again. Having previously left her permanent post she had no entitlement to ill health retirement just general state benefits.

    We desperately need good longitudinal data for a reasonable sized cohort. The single case reported here may have recovered or she may simply have learned to manage her symptoms to avoid triggering PEM, but we have no idea if that could be sustained when returning to premorbid activity levels.
     
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  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Uh, literally half recover, at least. Come on this is just weak. A freaking TV show about busting myths was more rigorous than this. And it was for entertainment. Why are entertainers more serious about a freaking TV show than actual medical doctors about their actual job?

    Do they literally don't know anything about the overall picture? I mean for years people have insisted that most recover, therefore it's very likely to randomly find people who will recover. Unless this clinician has only treated this patient, this is one case out of who knows?

    Of course those claims about everyone recovering were largely aspirational hopium and in fact many do not, but on a year-span most do, this is what was expected given the probabilities.

    Why is medicine so bad at statistics and probabilities? And I mean just absolutely catastrophically awful in ways that are hard to put into proper context.

    It's a good thing we will have medical and research AIs to allow us to bypass this broken system. Because it is completely broken and unable to commit a competent effort.
     
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