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

https://graziadaily.co.uk/life/in-the-news/lena-dunham-long-covid/

https://twitter.com/user/status/1292961608793284610

https://twitter.com/user/status/1292962740680773637

 

https://www.acsh.org/news/2020/08/10/deaths-are-incomplete-measure-covid-19’s-impact-14959

https://twitter.com/user/status/1292959840608964609

https://twitter.com/user/status/1292964534223884289

 

https://twitter.com/user/status/1292976428284358656

 

A key point is that, significant myocarditis or other heart damage (or neurological damage) is not typical in Long-COVID patients either. Without strong (prospective population-based) epidemiological studies of post-viral consequences, it is impossible to form any conclusions.

There is an ecological bias here - the first is that a large amount of people have been infected in a short amount of time, so an abudance of rare outcomes suddenly become visible. Combined with confused patients who are frustrated due to the lack of competent medical answers for their unusual symptoms are seeking answers on the internet...

Doing the rounds in the news are articles about covid-19 related hair loss for example (which could also be a medicine side effect...), regardless of how uncommon this symptom is.

 

There was an interview on NZ radio today. No mention of ME. Part of it about the long hauler phenomenon that hasn't had much media attention in NZ to date, the other part about the Survivor Corps in the US which is primarily a vehicle to encourage recovered patients to donate plasma and partly a support group for long haulers.

One bit was confusing. Donating convalescent plasma is a good idea. But long haulers donating plasma may not be such a good idea (ME and mystery factors in the blood and all that). On the Survivor Corps website they clearly state that only people who've been symptom-free for a while can donate, which is as it should be, but the interviewee seemed to suggest they were encouraging their FB group members - many likely long haulers - to donate. I hope I misunderstood that, quite possible. I wonder if the producers of plasma products are aware of the ME angle. Somehow I suspect not.

The interview: https://www.rnz.co.nz/national/prog...io/2018758953/long-haulers-with-diana-berrent

The Survivor Corps site (worth a poke around for those following long covid closely) https://www.survivorcorps.com

 

yesterday on BBC Radio 2 (Jeremy Vine show but with Vanessa Feltz) Dr Jarvis mentions ME several times in discussion on long-covid. (starts around 1.05)
https://www.bbc.co.uk/programmes/m000llsj

 

Until recently Sharpe was based in Edinburgh. I also know the Wessely visited Dundee's Ninewells hospital 1 or two years ago, won't have helped, funny that. Considering all that travelling he does on our behalf, spreading the word I have never met a Scottish Dr who uses the Scottish guidelines for M.E. (which are not bad) it's always been NICE. On a scoping exercise Forth Valley region said M.E. was a historic term that was no longer used. The chief medical officer of Scotland (Calderwood of holiday home covid infamy) said last year regarding M.E. that they take their lead from the CMO in England (Why, and why would she demote herself) and also that they couldn't tell practitioner's what to do. A lot of nonsense. So we just left Doctor's to mindlessly infect people with hepatitis, and let them continue to dole out thalidomide pills. Mmmm

 

"Coronavirus: Chronic fatigue possible 'extraordinary' after-effect"
A lot of this Australian article is about Chronic Fatigue Syndrome
https://au.lifestyle.yahoo.com/coronavirus-chronic-fatigue-after-effect-223447773.html

 

I think this MD’s quote could well put fear into any covid patients who’ve researched the history of ME/CFS, and seen the way the illness has been marginalised. Or, just have a prejudiced view of it from general media reporting.

Beyond basic advice on pacing to avoid post exertion malaise, in the longer term, it’s more likely a substantial research investment in long covid will inform better understanding of ME/CFS, that the other way round.

 

Only talks about long Covid but address a familiar issue

https://www.nature.com/articles/d41586-020-02335-z

 

I think some sort of stratifying of Long COVID patients may need to be done in research to find some of the abnormalities which may be less obvious in a heterogeneous group.

 

https://twitter.com/user/status/1293148324107821058

Code:

https://twitter.com/trishgreenhalgh/status/1293148324107821058

https://twitter.com/user/status/1293151894282657792

Code:

https://twitter.com/SithElephant/status/1293151894282657792

https://twitter.com/user/status/1293153400843112449

Code:

https://twitter.com/trishgreenhalgh/status/1293153400843112449

 

The "debate" and "controversy" really need to be spelled out here. It's very clearly divided: patients overwhelmingly report it is at best useless and at worse severely harmful while a group of controversial ideologues strongly disliked by the patient community have bullied this ideology despite a lack of evidence. The main issue is that no one can tell if it will make them worse. There is no logical reason why prudence over harm should be the norm with medication but dismissed as irrelevant in non-pharma interventions.

It's seriously embarrassing that exertion intolerance still has not been formally recognized as a significant symptom. From reading what is by now probably thousands of patient reports it's the most significant symptom, much more prevalent than even fatigue. Recognizing this symptom makes the very premise of exercise as a treatment an absurdity, which it has always been since the recognition that worsening of symptoms following exertion was the recognized feature of post-viral illness before the psychosocial sabotage.

This is incompatible with the psychosocial model of illness and the entire concepts of MUS and FND. Physicians are explicitly trained to dismiss those as psychosomatic/somatization/BS and have to reconcile entirely conflicting advice without useful evidence. Clinical advice should not be completely oblivious of reality. Very weak and disappointing.

At least this is good:

But is essentially the complete opposite of what has been built for the last several decades in regards to post-viral illness. It is also the very point of controversy that has been discussed above without elaboration. A complete paradigm shift is not realistic without fundamentally changing the system that created an invalid model. Moving forward is incompatible with the psychosocial model of illness.

Again, context matters:

This is not happening arbitrarily, the system was built to explicitly do this, encourages physicians to quickly default to it, even more so in the NHS. There are decades of failure behind this and they all have the same origin: belief in psychosomatic illness. Pretending that this context does not exist, has not only been fully planned and deliberate but also loudly contested for decades is insulting. This is basically talking about post-viral illness as if it were an entirely new phenomenon. Disappointing.

This is better than the YourCovidRecovery but only marginally so and it conflicts entirely with decades of reform pushing psychology as first line medicine. So I have no idea what impact this may have, it is mutually exclusive with current practice within the NHS but does not recognize that fact. For the most part it's for people who have other issues than post-viral illness, as usual.

Those decades of denial, sabotage and massive suffering inflicted on millions have to be acknowledged to make progress. This document still sidesteps the issue entirely. Not good enough.

 

Thursday, August 6:

https://www.thesun.co.uk/news/uknews/12325355/coronavirus-long-covid-symptoms-appg

The language seems similar to the Daily Telegraph article that also came out a few days ago. There are a few possibilities for that: one would be that the wording came from a press release or something similar from the long Covid people, but other possibilities remain.

 

We Need to Take Care of the Growing Number of Long-term COVID-19 Patients

https://time.com/5878448/longterm-covid19-recognition-research/

 

https://twitter.com/user/status/1292730386263547904

https://twitter.com/user/status/1291271414369091585

https://twitter.com/user/status/1291271416416022529

 

https://theconversation.com/im-a-co...it-feels-when-symptoms-last-for-months-143676
https://twitter.com/user/status/1293349478649548807

 

https://www.cnn.com/2020/08/10/health/children-long-covid-symptoms-intl-gbr/index.html

No mention of ME or CFS specifically, but it does mention:

 

Just speculating, but I have a feeling it will be those who have had 'mild' covid who will be at greatest risk of developping ME. Those who were hospitalised will most likely have had a longer period of convalescence and were not physically able to force themselves to 'get on with normal activities' before rehab.

I hope that within the various studies on covid-19 they will include non-hospitalised patients and also look at what medications (eg antibiotics, coricosteroids) they were given. There have been a number of stories of people who were not initially treated as covid patients but for bacterial throat/chest infections.

(There has been a simple/quick test available to show if someone has a viral or bacterial infection available for years. IMO it should have been standard use across the NHS (and other health systems)
and now more than ever).