News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Management of the long-term effects of COVID-19


https://elearning.rcgp.org.uk/mod/page/view.php?id=11665


Not terrible. Not really useful or informed either.

But one thing does stand out: slides by Chew-Graham, which make no mention of anything related to ME, or even fatigue. Which is her "expertise", having worked on this very problem for years. Somehow all of this has stopped existing.

Having spent years teaching about this, insisting that patients should comply with this treatment model, being vociferous against anyone who says otherwise, now in its limelight moment, the moment of truth where this neglected problem has become so large as to need experts on this very topic to provide the way forward. And they are there, and they speak. But not of anything they have done in the last several years. Nope.

As if it never happened. As if we never existed. Incredible.
 
Steve Bruce said two Newcastle United first-team players remain seriously unwell with Covid-19 and could be out for several more weeks, if not months.

Whereas the majority of Bruce’s squad have recovered from the team’s recent coronavirus outbreak, Newcastle’s manager said “four or five” were still sidelined by the virus. “For a couple of them it’s had a damaging effect,” he added. “It won’t be a week or two [that they’re out], it will be longer than that.
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https://www.theguardian.com/footbal...e-bruce-shocked-by-effect-of-covid-on-players
 
I don't think this has been posted before. Obviously Mayo is being mayo.


Mayo Clinic Q&A podcast: COVID-19 Activity Rehabilitation Program

https://newsnetwork.mayoclinic.org/...ast-covid-19-activity-rehabilitation-program/

After COVID-19 patients have recovered from the infection, some continue to have lingering effects from the disease, known as post-COVID syndrome. To help these patients, Mayo Clinic has launched the COVID-19 Activity Rehabilitation Program. This program takes a multidisciplinary approach, including specialists in occupational medicine, pulmonary medicine, psychiatry and infectious diseases to treat persistent symptoms and help patients return to daily activities and work.
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I'm getting a really strong vibe of why people believed in exorcism for so long. It really doesn't matter whether something makes any sense or not, you can even put something to the smartest people around, give them plenty of time and they can actually manage, in the best of circumstances, to be completely oblivious to the whole thing and just keep doing what they're doing for no reason other than this is what they want to be doing. Remarkable.
 
A short (1:46), BBC report on two LC patients; mainly on Dr Natalie MacDermott, who was one of the authors of the critique of the NICE guideline, in Lancet. She was also one of those interviewed in the ABC's Science Friction radio program. I saw this report given a run on both the ABC News channel and the SBS news, yesterday.

Long Covid: I used to run, now I can only walk 200 metres

Of interest is the claim that her malady has been found, by an MRI scan, to be from some sort of spinal-cord damage. There was no mention of ME/CFS.

Edit: I see now that this is an edited version of the item that was on Australian television. They've cut the chap out of what was a ~2:30m report.
 
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Autonomic dysfunction in ‘long COVID’: rationale, physiology and management strategies

https://www.rcpjournals.org/content/clinmedicine/early/2020/11/26/clinmed.2020-0896


Confusing advice. Recommends GET, though recumbent, unless it makes symptoms worse, but since PEM is not a recognized thing "worse" is very difficult to define and very much leaves open the door to advise to push regardless. This is an area where shutting the door to ME will cause problems.

Not bad but not very helpful either, again with this treating all things in isolation breaking everything.
 
don't know if this has been posted already or if this is the right thread.
Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services
Abstract
Background
Approximately 10% of patients with Covid-19 experience symptoms beyond 3–4 weeks. Patients call this “long Covid”. We sought to document such patients’ lived experience, including accessing and receiving healthcare and ideas for improving services.

Methods
We held 55 individual interviews and 8 focus groups (n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their stories and comment on others’ stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, clinical relationships, access, and service redesign.

Results
Of 114 participants aged 27–73 years, 80 were female. Eighty-four were White British, 13 Asian, 8 White Other, 5 Black, and 4 mixed ethnicity. Thirty-two were doctors and 19 other health professionals. Thirty-one had attended hospital, of whom 8 had been admitted. Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others felt “fobbed off”); and possible critical events (e.g. deterioration after being unable to access services). Emotionally significant aspects of participants’ experiences informed ideas for improving services.

Conclusion
Suggested quality principles for a long Covid service include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.
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https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-020-06001-y

A few participants in our sample (both clinicians and non-clinicians) made comparisons with post viral fatigue states like myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). They expressed empathy and newfound solidarity with people suffering with these conditions. More commonly, our respondents felt the fatigue they were experiencing was distinct, and a consequence of their organ damage.
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Sly Saint said:
don't know if this has been posted already or if this is the right thread.
Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-020-06001-y
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More commonly, our respondents felt the fatigue they were experiencing was distinct, and a consequence of their organ damage.
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I expected nothing better from Greenhalgh, it's still disappointing that they did not bother to learn a damn thing, still anchored on the invalid definition of ME as fatigue, THE fatigue. Nevermind that they say the same things for the same reasons and would explain the exact same way that LC is not just fatigue if one suggested so. Nevermind that it isn't really relevant what people "feel" is the cause of fatigue, even less so that it's a common thing to say for pwME that it an extreme level of fatigue unlike any normal fatigue, let alone that it's far far more than just that or even that PEM is obviously not the same as fatigue itself, even the extreme kind. Nevermind that dysautonomia causes fatigue and that it's very common in both. Nevermind it all. It's frankly getting silly, the level of willful ignorance, but that's just par for the course with us, we are not deserving of people actually being bothered by such things as facts like they normally do.

This paragraph is insulting. It was probably meant to be. It's entirely out of ignorance but it's still frustrating, as it's all coming at a time when it could have tipped the entire issue towards future progress given the NICE committee and whatever Cochrane is doing in the meantime waiting for others to absolve them of any responsibility in making a decision that will displease people irrelevant to the issue. Instead everything is stalemating. What a dumpster fire.

I browsed a bit. Of course if you'd remove the labels and context this may as well be an ME study. The statements and facts are the same. There is no mention of pacing, only one reference to exertion increasing symptoms, but as they did not bother to read anything about ME, of course they have no clue about PEM and since they shut the door on us they shut the door on this as well. Dumb dumb dumb and self-defeating.

Crabs in a bucket mentality meets escalation of commitment aligning to repeat the exact same mistakes for the exact same reasons. Frankly things are moving backwards right now, for everyone.

And nitpicky but one does not "express empathy". One either feels or has empathy and one expresses sympathy. Whatever.
 
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Has this been shared?

British Journal of Sports Medicine - Blog - Dec. 18. 2020
"Return to exercise" - helping patients to overcome the long tail of covid-19
Exercise remains a key component of rehabilitation for patients recovering from covid-19. However, there is limited guidance on how to start and progress exercise in non-athlete populations in the post-acute period of infection. We discuss if specific “return to exercise” protocols could help to solve this problem and return patients in the general population back to normal function.

Here are some reactions from twitter:





 
Kalliope said:
Has this been shared?

British Journal of Sports Medicine - Blog - Dec. 18. 2020
"Return to exercise" - helping patients to overcome the long tail of covid-19
Exercise remains a key component of rehabilitation for patients recovering from covid-19. However, there is limited guidance on how to start and progress exercise in non-athlete populations in the post-acute period of infection. We discuss if specific “return to exercise” protocols could help to solve this problem and return patients in the general population back to normal function.

Here are some reactions from twitter:





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Predictable. One of the most direct and important consequences of obsessively working to separate from us. PEM is an ME-specific term, at least for the most part. Advise against exercise is based on PEM. Separating from ME means leaving off the stink of PEM, as it's ME-specific and also incompatible with the typical "fatigue" trope if you just borrow that concept from us and nothing else. All it needs is clever marketing terms.

So now GET can be "tried" all over again, along with the entire roster of weird woo woo therapies. After all it's completely different and it's never been tried. Because you don't have ME. Yes, exercise may be bad for ME, we know that now. But you don't have ME, do you? Or PEM? No, you don't, PEM is not a recognized symptom or feature of LC. Can't have that "chronic fatigue" stink, right? Therefore any advice against exercise is not relevant here. Even if the ME guidelines pass in a good form. It's an exclusion factor, they explicitly said it in the NICE LC guidance: out of scope.

And of course if you don't want to try, maybe it really is all an attitude problem. After all there is no evidence of harm from exercise for people with Long Covid, it's a brand new condition with no comparables. Go look for it, doesn't exist. Obviously, never been tried. So why won't you just try it?

It sucks to be Cassandras. Everyone hates what you say no matter how it turns out. Even if ignoring our warnings leaves everyone worse off in the end.
 
Sly Saint said:
don't know if this has been posted already or if this is the right thread.
Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-020-06001-y
Click to expand...

Last time I checked diagnosis and scientific research on the pathophysiological similarities between two supposedly distinct conditions doesn’t take into account if patients “feel” their illness is different than another illness. So much subjective bias goes into that. They have no clue. I have no clue how ME feels for another sufferer who has the same illness I do. You evaluate and compare the description others give of their symptoms and overall illness experience. So far when patients describe long COVID I do a double take because they could all be describing ME.
 
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I’m wondering whether some or all of the “feels different to ME” comments may come from people who have or had ME. Still doesn’t convince me as those who had ME and then got Covid but didn’t feel much different would likely have not taken part in the study; they may even never have had a Covid test if the symptoms seemed similar to an ME relapse.
 
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