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

https://twitter.com/user/status/1310837666599100422

https://twitter.com/user/status/1310839510050242561

https://twitter.com/user/status/1310841228825710592

https://twitter.com/user/status/1310841699682471937


https://twitter.com/user/status/1310842862905495552

https://twitter.com/dan_wyke/status/1310843598808797185?s=21

 

e could have saved them a lot of truble by reminding them of all he relevant sources of information they would need for the programme. BBC science and medical correspondents going back at least to Geoff Watts. The SMC. Sorted.

EDIT I wonder how they reported on McEvedy and Beard.

 

Do we know what is meant by "the people in the back", who must, from the tone adopted, be recalcitrant school children?

 

She co-authored the pre-print that wanted to separate Long Covid from ME/CFS. One of the co-authors was Rachel Pope who claimed she thinks ME can’t follow from COVID; other co-authors seem like they may also be invested in keeping separate from ME/CFS. So I suspect that is where she is coming from and she may be complaining about ME/CFS patients along with others making the link.

 

BMJ - Long covid and self-help pacing groups - getting by with a little help from our friends by Paul Garner

Being ill is a lonely business, and worse with covid-19. Locked away from friends, no collegial coffee breaks, no face to face medical consultations, and a television full of Orwellian government briefings. Add symptoms that your friends don’t quite believe; fatigue that doctors have framed as psychosomatic; and the poison of post-exertional malaise with no advice on NHS or NICE websites. The isolation is complete.

With little formal support, many of us turned to social media. This helps, but has a limit. There are only so many times you can read long stories about other people’s illness, or miracle cures from histamine free diets. Four of us, all struggling with random, vicious symptoms, and finding it difficult to pace alongside family, life, and work commitments, decided to work together. We set up our own self-help pacing group twelve weeks ago: a community of practice to swap stories, share experiences, and provide mutual support.

 

In the first part of the tweet, she means that people – including, I imagine, far too many doctors and journalists – are lazily describing Long Covid simply in terms of fatigue. I'm not surprised sufferers get frustrated about that.

I don't have too much of a problem with what I think she's saying in the second part, that there's no evidence yet that supports automatically lumping Long Covid in with other post-viral conditions. It looks likely there will be subgroups, some of which may display patterns of sequelae that have not been seen before in significant numbers of people; and others that are much more typical after a virus, such as postviral symptoms that resolve within a year or so, and long term problems that can be diagnosed as ME. There may also be patients who're unlucky enough to be left with both atypical symptoms and ME. In the interests of learning as much as possible about the after-effects Covid-19, that research still needs to be done.

 

Long Covid: What is it, what are the symptoms and what help is there for sufferers?

https://www.itv.com/news/2020-08-12...symptoms-and-what-help-is-there-for-sufferers

Denial has consequences. No excuses for this failure. It's the same failure going back millennia, ascribing magical nonsensical explanations to pre-breakthrough diseases.

Common sense: file not found. Also: "boost your immune system"? Really? Atune your chakras? Channel your inner mindfulness? Why bother doing advisories against supplements that claim the same if you're going to make the same claims from the other corner of your mouth? Pseudoscience boosted by medical authorities. Ugh. It's not as if a lot of long-haulers are constantly pointing out that they were super fit before they got ill and it seems to offer no protection whatsoever but sure let's light the sage around the room to dispel the evil spirits that cause disease.

Yes. Because people can absolutely do that, sit out for months, maybe years, who knows? No income, no help, no support, no clarity, bad advice, rampant discrimination. Totally a normal thing people can do. Children can just take care of themselves. Bills with auto-pay from the disability fairy accounts. Food gets prepared and sent under people's nose just like magic. This is common nonsense.

All the unknowns here were the product of a series of failures. Willful ignorance leading to a massive public health disaster. But, hey, it's so much fun to think about magical software-hardware analogies and doing copy-paste research on finding the right explanation to end all those annoying complaints.

 

I wonder if once again a doctor has confused "graded exercise" with "reduced exercise"? It's really not helpful with a name for a phenomena which can have two opposite meanings..
“Use your common sense in terms of resting, not overdoing it, doing a bit of exercise, but not too much - graded exercise, if you like... gentle exercise that doesn't fatigue you, doesn't wear you out is important.

 

Yes. I realised that. I was wondering whether it was the likes of us that she regards with such imperious disdain.

 

ME/CFS is not a good diagnosis to have, with no treatment options and little promise of progress (or so most people think, I'm not that pessimistic). I can understand they prefer to exhaust other possibilities first before accepting that they might have ME/CFS.

If they're clinicians, accepting that ME/CFS is a horrible and real illness could be especially difficult if they were previously invested in some BPS narrative of "not a real disease, curable with positive attitude and exercise, but patients just don't want to get better".

 

Yes, but the institutions with which Pope and Alwan are, or have been, associated have contributed to the state of the morass. How surprising that they now they wish to dissociate themselves from the consequences.

 

The irony of medical professionals rejecting ME, or even PVFS, because they reject a psychological explanation for their illness is predictable and illuminating. Especially the language: "this is real", "this isn't psychological", "this isn't just anxiety" and, obviously, "this isn't just fatigue". It's so thick it's deserving of becoming an entire field of research in itself, how expertise can sometimes turn less competent than novices, precisely because of what the expertise teaches.

It's clearly rejected because they view ME as psychological, which they know is not their case, but that is precisely the argument made for ME/CFS being psychological. And they hate the gaslighting. And hate the stigma. And the uncertainty. And the socioeconomic consequences. But seemingly would have no issue making a special case for themselves and leaving us in the same oubliettes they found themselves into.

Awkward.

 

I frankly don't mind this temporary attempt at segregation, ME is a black hole of criminal neglect and despair, it will lead nowhere anyway, but it would be fantastic if it lead to the acknowledged debunking, in fact, of the stupid "illness seeking label" trope that is widely cast on us. It is clearly soundly rejected, as anyone with more than 2 neurons would know is obvious.

Of course that won't happen because doublethink is fundamental to psychosomatic ideology but it sure would be great if medical professionals stopped making blatantly false claims about sick people. Weird thing to ask since one would assume this is the norm but here we are, with the opposite norm, somehow.

 

Nine in ten recovered COVID-19 patients experience side-effects - study

"In an online survey of 965 recovered COVID-19 patients, 879 people or 91.1% responded they were suffering at least one side-effect from the disease"

"Fatigue was the most common side-effect with 26.2% reading, followed by difficulty in concentration which had 24.6%"

No information yet if they were hospitalized and how long since they had tested negative.

 

It's tough to see the leading European & UK figures of the #LongCovid advocacy movement conflate ME with chronic fatigue, out of all people. Especially when the ME community as a whole has been supportive of their work and has continuously -- since April -- been providing guidance on pacing.

Clearly, not all cases of long Covid are ME. Some people might have other sequelae (e.g. lasting organ damage). And I understand that they don't want to face the stigma associated with ME. But that advocates still publicly and repeatedly imply that it is 'just fatigue' or associate it with 'anxiety', in order to avoid stigma around long COVID, is gut-wrenching.

Now that they are going through prolonged post-viral illness, I can't imagine that they would think of ME as a psychological disorder? I hope the answer to this question is negative, but I may be wrong after all.

For all of us who have been sick with ME long before COVID appeared, we face enough difficulties with gaslighting and denial as it is. But it seems that as long as an association between ME and long COVID stands in the way of the motives of these advocates (recognition, medical care...), they won't hesitate to fight it vigorously. I am not sure whether they are aware of the damage this further inflicts upon ME sufferers, but I don't think they seem to care much about it.

I think that proper education about ME is urgently needed to at least mitigate this repeated, public conflation of ME with chronic fatigue and anxiety. It could be as simple as explaining diagnostic criteria for ME to people with long COVID and seeing if they fulfill them. In the US, #MEAction have been doing well on this side, in particular with their clinicians seminar held in August. In the UK, Forward-ME (and especially ME Association) must act quickly before ME gets buried even deeper -- this issue is becoming a priority for ME advocacy.

 

In situations where there is no definitive ICD-10 or OPCS-4 code(s), clinical coders, NHS bodies, academic institutes and non-coding professionals can submit queries to NHS Digital for advice.

The Query Resolution Database is publicly searchable and gives access to resolutions provided in response to customer queries.

Between March and July, a significant number of queries were submitted in relation to COVID-19 and ICD-10 coding and emergency coding, including a query (Query UID 13409 resolved on July 22, 2020) requesting advice on emergency coding of 'Post covid-19 syndrome'.*


Advice from NHS Digital (resolved July 22, 2020) in response to submission of a query regarding the emergency coding of 'Post covid-19 syndrome':

Post #38 https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/page-2#post-291242



The WHO has released further Emergency Use codes for classifying consequences of COVID-19 for ICD-10. These are not yet added to the browsers for ICD-10 but have been added to the September 2020 release of the Blue ICD-11 MMS browser:

Post #39 https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/page-2#post-291248


*Edited to insert intro text.

 

Barely worth mentioning

https://www.thesun.ie/news/5955694/coronavirus-ireland-miracle-dad-long-term-effects/

 

She's yet another doctor who clearly has never listened to a single one of her ME patients.

I'm fuming today because two of my doctors have filled out reports describing my symptoms as "severe fatigue" when I never used the f word (ie, 'fatigue') in any of my conversations with them. In fact, I made sure to stress that I felt "ill" and "sick" at every opportunity and I listed my symptoms in detail. Yet, to them, I am just suffering from "fatigue".

Do doctors have their sense of hearing removed upon graduation?