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

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Deaths Are an Incomplete Measure of Covid-19’s Impact
By Josh Bloom and Henry Miller — August 10, 2020
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https://www.acsh.org/news/2020/08/10/deaths-are-incomplete-measure-covid-19’s-impact-14959

Particularly worrisome are the numerous reports of patients
experiencing long-term adverse effects that resemble a condition
variously known as myalgic encephalomyelitis or chronic fatigue
syndrome (ME/CFS). Its signs and symptoms may include fatigue, loss of
memory or concentration, sore throat, swelling of neck or armpit lymph
nodes, unexplained muscle or joint pain, headaches, non-restorative
sleep, and extreme exhaustion that lasts more than 24 hours after
physical exercise or mental stimulation ("post-exertional malaise").

People with ME/CFS are often incapable of performing ordinary
activities, and sometimes become completely debilitated, unable even
to get out of bed. A good word picture was provided in an interview of
three Covid-19 patients on NPR's July 11 "Weekend Edition," who
described in poignant terms their ongoing symptoms, and CNN anchor
Chris Cuomo recently described on-air his experience with some of
these symptoms following his bout with Covid-19. The manifestations of
ME/CFS can persist for years, although, of course, we can't yet know
what the typical, long-term post-Covid-19 course will be.
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Daisybell said:
I say that my ME came on after parvovirus. A colleague at work caught parvovirus some time after I did, and she died from myocarditis....
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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
 
Mithriel said:
Scotland was well on the way to using the CC for ME until they received a letter from the head of the neurologists in Scotland who said that neurologists would not use the diagnosis and a letter form the head of the GPs saying they would not use the diagnosis either (Can't remember the exact organisations)

Completely coincidentally that would be Michael Sharpe and Clare Gerada.
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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 :rofl: 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:jawdrop:) 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:facepalm:
 
"An MD: “‘We know little about what is causing this, so further research is crucial, but the symptoms are similar to what we see in patients with ME & #ChronicFatigueSyndrome, so there may be much to learn from these patients that can inform how we help #LongCovid patients,’”
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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
Let us start simple. With other common viral illnesses, such as flu, we would expect recovery to mean going back to pre-infection levels of functionality and quality of life. This means we must follow up all patients with confirmed (by test) or highly probable (by symptoms) COVID and find out whether they have returned to their previous normal within a specified time from the onset of their symptoms.

The ‘recovery’ definition must include duration, severity and fluctuation of symptoms, as well as functionality and quality of life. Everyone who is symptomatic would remain a ‘case’ until they fulfilled the recovery criteria or died. This is basic bread-and-butter epidemiology. We just need to apply it to this pandemic.

To do so, we must also define who had the infection in the first place. When testing is absent or inaccurate, physicians must be provided with universal and simple criteria for what constitutes clinical COVID. A good starting point are the studies characterizing typical symptoms on a population level.
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https://www.nature.com/articles/d41586-020-02335-z
 
Track post-COVID sickness, not just cases and deaths

Define ‘recovery’: that the virus leaves many ill for weeks or months must shape pandemic policy.

Eight months into the global pandemic, we’re still measuring its effects only in deaths. Non-hospitalized cases are loosely termed ‘mild’ and are not followed up. Recovery is implied by discharge from hospital or testing negative for the virus. Ill health in those classed as ‘recovered’ is going largely unmeasured. And, worldwide, millions of those still alive who got ill without being tested or hospitalized are simply not being counted.

Previously healthy people with persistent symptoms such as chest heaviness, breathlessness, muscle pains, palpitations and fatigue, which prevent them from resuming work or physical or caring activities, are still classed under the umbrella of ‘mild COVID’. Data from a UK smartphone app for tracking symptoms suggests that at least one in ten of those reporting are ill for more than three weeks. Symptoms lasting several weeks and impairing a person’s usual function should not be called mild.
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https://www.nature.com/articles/d41586-020-02335-z
 
MSEsperanza said:

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


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


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https://twitter.com/trishgreenhalgh/status/1293153400843112449
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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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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.
Common non-specific neurological symptoms, which seem to co-occur with fatigue and breathlessness, include headaches, dizziness, and cognitive blunting (“brain fog”).4 Until evidence based guidance appears on how to manage or when to refer such symptoms, we recommend supportive management and symptom monitoring in primary care.
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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:
From the limited current evidence, we anticipate that many patients whose covid-19 illness is prolonged will recover without specialist input through a holistic and paced approach. Much can be achieved through interprofessional, community-facing rehabilitation services which embrace patient self management and peer support and harness the potential of video and other remote technologies
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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:
Patients, many of whom were young and fit before their illness, have described being dismissed or treated as hypochondriacs by health professionals
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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.
 
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Thursday, August 6:
UP to 500,000 Brits are suffering the effects of “long Covid”, MPs have been warned.

They have also been told some doctors are dismissing many of the long-term symptoms suffered in the wake of the coronavirus as ME.

Experts have indicated psychosis, fatigue, loss of eyesight and mobility issues are among the wide-ranging conditions that have been identified in those who have previously contracted the virus.

The founder of the Long Covid Support Group Claire Hastie warned that GPs were regularly misdiagnosing ongoing problems as anxiety or ME, saying: "Many people in our group to this day are being told by their GPs that it's caused by anxiety and it's all in their heads.

"It can cause anxiety, but it is not caused by anxiety. The science needs to catch up with us."
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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

Dr. Lynne Turner-Stokes, a U.K. specialist in rehabilitation medicine, and one of the few experts in managing long COVID, has made the case that all patients who still have symptoms at 2-3 months should undergo screening to see if the infection has caused medical complications. For some patients with long COVID who are not improving under the management of their primary care team, specialist rehabilitation clinics are needed to help manage patients’ symptoms and to promote their recovery, just as we have specialized clinics for treating people living with HIV. We need to build on the services already in place, she argues, for heart and lung rehabilitation and bolster them with other services to make them fit for purpose for rehabilitation of patients with long COVID.
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https://time.com/5878448/longterm-covid19-recognition-research/
 
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).
 
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