BMJ Management of post-acute Covid-19 in primary care, 2020, Greenhalgh et al

Two more Rapid Reponses

One of interest (first two paragraphs) from Diane O'Leary
Greenhalgh and colleagues provide an invaluable foundation for management of long Covid (including both “post-acute Covid” and “chronic Covid”) in primary care.[1] It would be helpful to have some explanation, however, for their use of the term “chronic fatigue syndrome” (CFS) rather than “myalgic encephalomyelitis/chronic fatigue syndrome” (ME/CFS). While authors might hope to circumvent longstanding controversy about those terms, management of long Covid does require clear, consistent understanding of the core ME/CFS debate.

The term “chronic fatigue syndrome” names a psychiatric condition that sometimes develops in reaction to acute viral infection.[2] [3] [4] It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs. By contrast, the term “myalgic encephalomyelitis” or “ME/CFS” names a chronic biomedical disease that typically develops after acute viral infection.[5] [6] Criteria for CFS are very broad, while criteria for ME/CFS include only those with the hallmark symptom of post-exertional malaise. In the US, “ME/CFS” has been the term in use for governmental health organizations since 2015, including NIH, National Academy of Medicine, CDC and the Agency for Healthcare Research and Quality. In the UK, NICE has also shifted in recent years from the terms “CFS” and “CFS/ME” to the terms “ME” and “ME/CFS”. This change signals concern about biomedical disease as a guiding principle of revisions to the existing guideline for management. This year, in a striking shift in orientation, the UK funded the largest ever biomedical study of ME/CFS.[7]
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https://www.bmj.com/content/370/bmj.m3026/rapid-responses
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Discussion of this Rapid Response has moved here:
Diagnosis of ME and the use of the labels ME and CFS.
 
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You may be interested to see the latest Rapid Response to this article
https://www.bmj.com/content/370/bmj.m3026/rapid-responses
links all the rapid responses.
https://www.bmj.com/content/370/bmj.m3026/rr-7
takes you directly to mine.

Here's the beginning of it, the rest at the link:

Rapid Response:
Re: Management of post-acute covid-19 in primary care - A warning to Post Covid sufferers and their clinicians

By Patricia A Davis
Dear Editor

Pseudoscience wears many guises. People with poorly understood long term medical conditions have always been the target and victims of snake oil sellers promoting their untested and sometimes dangerous treatments, some coming at us from unexpected directions. My aim in this rapid response is to warn post-Covid sufferers and their clinicians about the perils ahead.

If clinicians cannot provide effective treatment that enables people to return to their normal activities, and, worse still, if they provide ineffective or harmful treatment, or express disbelief in the severity or even the reality of those symptoms or misdiagnose them as indicating psychological problems, where can a patient with long term debilitating physical symptoms turn for help?

People with ME/CFS understand this dilemma all too well. And now many Post Covid patients are confronting it too. In my thirty years living with ME/CFS, I have experienced disbelief, misunderstanding and unhelpful advice from all directions - advice to exercise from doctors that made me sicker, and alternative medicine whose only effect was to empty my wallet.

So what has the ME/CFS experience to do with Covid-19?

Like Post Covid, ME/CFS is not just about fatigue. The defining symptom is post exertional malaise [1], or 'crash' which some Post Covid patients report experiencing too. A walk, a shower, a Zoom meeting can confine them to bed for days, as eloquently described by Professor Paul Garner in his recent BMJ Opinion articles [2]. It looks likely that some will be diagnosed with ME/CFS. The only strategy that patients find helps is pacing - surprisingly difficult for people desperate to return to normal life. The ME Association [3] and Physios for ME [4] have helpful guides. The stark truth is there is no proven cure for ME, though some find medications help with pain and sleep.

So what about my warning?

People with ME/CFS are battered on all sides by a persuasive mix of treatments promoted on the basis of professional eminence, charisma, or compelling anecdotes, but devoid of good research evidence of efficacy or safety.
[...]
more at link.
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Snowdrop said:
Really excellent. Thank-You Trish for your efforts.

Is it me or am I sensing a thaw at the BMJ with regard to taking on information that accurately reflects the troubling situation we find ourselves in courtesy of the pysch 'experts?'
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I think rapid responses allow a wider range of points of view. They're not peer reviewed, and I gather almost all are published unless they are off topic, rubbish or libellous.
 
Trish said:
Changing the subject somewhat, but returning to the subject of this thread, you may be interested to see the latest Rapid Response to this article
https://www.bmj.com/content/370/bmj.m3026/rapid-responses
links all the rapid responses.
https://www.bmj.com/content/370/bmj.m3026/rr-7
takes you directly to mine.

Here's the beginning of it, the rest at the link:
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Well done, Trish! Excellent letter. I'll be sticking it out on Twitter shortly.

At one point, BMJ Rapid Responses had a voting button, so you could "Like" a letter - appears that BMJ have stopped doing that unless it does not display for me in Opera, or it only shows when you are logged in to BMJ, which I'm not at the moment.

Anyway, great to see your letter up there.
 
Are you aware Trish, that a small selection of BMJ Rapid Responses are chosen for publication in the BMJ print edition? The print edition versions are indexed in PubMed. (I had an RR selected for the print edition in 2003.) This appeared about three weeks after the article to which it referred had been published in print. If yours were selected, you should expect to be contacted by the editors by email to discuss and agree any edits, confirm your address and email address. Would be great if yours were selected for the print edition.
 
Snowdrop said:
Really excellent. Thank-You Trish for your efforts.

Is it me or am I sensing a thaw at the BMJ with regard to taking on information that accurately reflects the troubling situation we find ourselves in courtesy of the pysch 'experts?'
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Some words to that but I doubt Godlee understands how they are directly linked to the whole Crawley/BPS affair she has utterly failed at handling. "Honouring the patient experience" is exactly what Godlee and her journal has helped to effectively block and disparage. Some patients are more equal than others, or something to that effect...
Fiona Godlee said:
One of the most distressing aspects of living with long covid, says Garner, is the dismissive attitude of some doctors.
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Oh, is that a bad thing? Yes, yes it is. So why is Dr Godlee a strong proponent of doing exactly just that on some patients, not on others?

https://www.bmj.com/content/370/bmj.m3392
 
Andy said:
Now I wonder who might have convinced them to think like that...


Link in tweet is to the subject of this thread.
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How shocking that the ... *checks notes* ... current standard of care is being applied to ... *checks notes* ... sick people.

I mean, yeah, it is, because that current standard is shockingly bad and harmful. But I have little patience for Greenhalgh's blatant hypocrisy here, it's very annoying. This is a house she agreed to build, and then defended. We warned it was rotten all the way down and leaking toxic spills everywhere.

And now, what, she wants exemptions? The whole system that guaranteed failure should remain in place but we'll do an exception for this one situation that falls perfectly under the criteria? Hell no. What a completely broken mess of a system.

You say you don't like your monster's work, Dr Frankenstein? But it is what you ordered it to do. Maybe the problem isn't the monster itself.
 
There are lots of parallels. I once had chronic fatigue for a few months. Awful.
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Sorry don't know how to embed a tweet. The above is a response from T Greenhalgh.

It still seems a rather insensitive and clueless comment. It gives me the impression that few people outside those affected with illness really pay close attention to what it's all about yet think they know. Too busy no doubt.
 
From the BMJ article:
There is much debate and controversy about the role of graded exercise in chronic fatigue generally (see patient responses to a recent Cochrane review47) and in covid-19 in particular (see a recent statement from the National Institute for Health and Care Excellence (NICE)48). Pending direct evidence from research studies, we suggest that exercise in such patients should be undertaken cautiously and cut back if the patient develops fever, breathlessness, severe fatigue, or muscle aches. Understanding, support, and reassurance from the primary care clinician are a crucial component of management.
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That paragraph on evidence on treatments for chronic fatigue seems not too bad to me at a first glance.

OK, the authors could have added something about the difference betwee chronic fatigue and ME/CFS and they could have said that there is not only much debate and controversy but that Cochrane finally acknowledged much of the criticism and as a result there has been much controversy between the Cochrane editor in chief and the authors that worked on the revision of the review. And that the latter controversy nearly let to a withdrawal instead of the publication of the updated version.

And that as a consequence to the still poor quality of the updated version, the new editor in chief set up a patient advisory group for a completely new update process.

Or at least, the authors of the BMJ article could have actually referenced the patients' and others' responses and the announcement of the editor in chief instead of the old review from 2017 via Pubmed [= endnote 47].

Of course, the reference to the old review might just be a typo.

Edited for clarity.
 
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