BMJ letter from LongCovid doctors.

The effects of the virus should be studied in the way that any other disease would be, with thorough attention paid to epidemiology, pathophysiology, and management

That allows for an easy get out. It will be studied like "any other disease". The "any other disease" selected is ME/CFS.

Edited for typos.
 
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But this is good:
Where current guidance has been issued, such as the statement from the National Institute for Health and Care Excellence5 cautioning against graded exercise therapy in the context of covid-19, it should be communicated quickly to clinicians on the front line.
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and
  • Patient involvement—patients must be involved in the commissioning of clinical services and the design of research studies.
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Basically what the ME community has been begging for decades. And the chronic illness community in general.

They seem to want exemptions carved for themselves because it affects them. I don't like the framing, as if this were truly unexpected and impossible to anticipate. There is systemic failure that guaranteed medicine would fail massively at dealing with long COVID. Medicine is currently built not to do this, with extreme prejudice. They are asking the very same things we have been asking for decades, because those things are self-evident.

Medicine has rejected those self-evident things for decades. It can't deliver this right now. This is the way forward but it's too naive of the context that guaranteed these people would end up ensnared in a self-fulfilling prophesy they would have used in practice themselves if they hadn't been unfortunate.

That's the problem with junk drawers. Everything is tangled up and you can't actually carve out exceptions. There is no discussion here, or even comprehension, that this outcome was guaranteed by choices made and reaffirmed over decades. This is a recurring problem that is currently in a maximum state of failure and is many times larger than even the worst case scenario of long Covid.

I would ask this question, though: why can't they accept that this is psychological? Because apparently that's a thing that people with chronic illness have to do. We certainly have to. I know it isn't, yet it's required of us, to prove a negative, which is impossible. Because I see nothing accepting psychological causes here. As it should. And yet all these people would have asked us the very same question had they been on the right side of the patient-physician divide.

This isn't a rhetorical question, I want answers. We have to provide those answers. We can't, because it's impossible and an invalid proposition. How does one do that? Prove a negative in a situation where they are guilty until proven innocent? What is their argument for why this is not psychological? Medicine can't function with having to require physicians to personally experience a disease before they can see that it is, in fact, a disease. No profession can and exceptions shouldn't be carved out arbitrarily, it goes against the very idea of professional expertise.
 
Peter Trewhitt said:
A step forward but it is a shame they did not mention the possible symptom of post exertional malaise as an indicator that exercise might be contra indicated.
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Do people with post-viral sequelae from Wuhan Virus NCOV-2019-SARS-2 typically have PEM? We get it not only from “exercise” but from many ordinary functions which are not perceived as an effort by people in low-average health. Perhaps they only tire more easily than normal, but they don’t have the 24-48 hour worsening that we do.
Or perhaps they do. I think we should make no assumptions and look for enough data before making any public statement.
 
Sisyphus said:
Do people with post-viral sequelae from Wuhan Virus NCOV-2019-SARS-2 typically have PEM? We get it not only from “exercise” but from many ordinary functions which are not perceived as an effort by people in low-average health. Perhaps they only tire more easily than normal, but they don’t have the 24-48 hour worsening that we do.
Or perhaps they do. I think we should make no assumptions and look for enough data before making any public statement.
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My understanding is that some long Covid suffers do experience PEM that looks very similar to that experienced by people with ME. So though Covid can produce symptoms that do not overlap with ME it is likely that a percentage of long Covid suffers do look like fitting into definitions of ME.

However it will take time before it is clear that for them a diagnosis of ME is the most appropriate, with or without other concurrent conditions, or if we will need a new distinct diagnosis.
 
The following I find encouraging:
Failure to understand the underlying biological mechanisms causing these persisting symptoms risks missing opportunities to identify risk factors, prevent chronicity, and find treatment approaches for people affected now and in the future.
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Before we get people exercising, it’s important to be sure that it’s going to be safe.
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A reliance on “one size fits all” online rehabilitation services risks serious harm to patients if pathology goes undetected
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Peter Trewhitt said:
...However it will take time before it is clear that for them a diagnosis of ME is the most appropriate, with or without other concurrent conditions, or if we will need a new distinct diagnosis.
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In case you are maybe not aware, on August 19, someone in the NHS submitted a request to SNOMED CT (via NHS Digital) for creation of a new Concept(s) for a "Post COVID-19 syndrome" (or similar term, subject to consultation with clinical bodies). This review status of this request is currently marked as "In Progress". A large number of COVID-19 related concept terms have already been added to SNOMED CT.


In the context of this request, the WHO has been asked to clarify whether they are developing terminology and coding for a similar concept term for ICD-10/ICD-11, but thus far have not responded to my enquiry.

There are no proposals in the ICD-11 Proposals platform for a new concept term(s) and coding for a "Post COVID-19 syndrome" (or similar term) but the WHO might potentially be discussing this outside the context of ICD-11 proposals. Although ICD-10 Version: 2019 is the final update in the life of ICD-10, emergency codes for COVID-19 were added to ICD-10, earlier this year. But there is currently no code in ICD-10 for a "Post COVID-19 syndrome" (or similar term).

It would make sense for new terminology and any associated specifiers to be standardised across SNOMED CT and ICD-10/ICD-11 as the two systems are cross mapped and in some countries (eg NHS England) both systems are mandatory for use across all primary and secondary care settings.


SNOMED CT Request #32731 text in a dedicated thread here:

Post Covid-19 Syndrome SNOMED coding:

https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/
 
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In the BMJ letter the 39 “doctors as patients” write:
Patient involvement—patients must be involved in the commissioning of clinical services and the design of research studies.


“No decision without me”6—lessons learnt from other illnesses have shown the importance of involving those most affected. Patients experiencing persisting symptoms of covid-197 have a great deal to contribute to the search for solutions. Involving patients in research design8 and the commissioning of clinical services will ensure that the patient perspective is listened to and will optimise the development of such studies and clinical services. This may take the form of representatives from patient formed groups, which may include signatories of this letter, liaising with policy makers, researchers, and healthcare leaders.
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The above reminded my of Trisha Greenhalgh’s negative comments about ME/CFS patients in her BMJ article “Towards an institute for patient-led research” (https://blogs.bmj.com/bmj/2019/11/1...owards-an-institute-for-patient-led-research/):
Notwithstanding the potential for such creative conflict, a significant challenge for patient-led research is that it is often (understandably) underpinned by “cognitive passions”—that is, deeply-held, emotionally-charged perspectives on a condition. While such passions give energy and focus to a patient-led research agenda, they may mean that patients find it difficult to approach research into their own condition with the equipoise expected in science. However, while one high-profile patient-scientist conflict seemed to generate negative tension (chronic fatigue syndrome [28]); there are many counter-examples of conflicts that were highly productive, including in rare diseases, HIV/AIDS, mental health, and breast cancer.
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On Twitter it appears that most of the vocal medical long-haulers think Prof Greenhalgh is doing a great job following her BMJ article on management of “post-acute covid” (thread here). I’m not sure if they are aware of her above comments and her past praise for SW (see Tweet below) and the role he has played in treating (often post-viral) ME/CFS patients in almost exactly the opposite way to the way they propose treating people with “persisting symptoms of covid-19”, or whether they are choosing to overlook it.

Tweet from 2012:



If I feel well enough I over the next few days I may try to post a polite and carefully worded rapid response below the BMJ letter, highlighting the positive contributions that patients have made in field of ME/CFS research and treatment, and how that is now benefiting long-haulers. Although, @Caroline Struthers ’s experience suggests it may be a waste of time (see https://www.s4me.info/threads/bmj-m...020-greenhalgh-et-al.16286/page-2#post-279983)

I don’t want to alienate Greenhalgh but I do think it would be helpful for her to clarify her views on the CBT/GET models of ME/CFS and whether or not she believes that these should be applied to those who meet the various diagnostic criteria for ME/CFS following covid-19. At the moment she seems to be carefully avoiding the subject.
 
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Wrt JAMA paper on cardiac MRI

In many cases, myocarditis improves on its own or with treatment, leading to a complete recovery. Myocarditis treatment focuses on the cause and the symptoms, such as heart failure. In mild cases, persons should avoid competitive sports for at least three to six months.29 May 2020
Symptoms: Heart failure
www.mayoclinic.org › drc-20352544
Myocarditis - Diagnosis and treatment - Mayo Clinic
 
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