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

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Mithriel said:
Is this true? I have never heard of that before.
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Most cells have similar numbers of mitochondra, regardless of sex. There may be modest groupwise differences between sexes in muscles, based on strength and fitness, but this has little to do with succeptibility to ME/CFS or Longcovid.
The number of mitochondria in major muscle groups is always in excess to what is required to achieve VO2Max anyway, including in CFS patients. (VO2Max is limited by the cardiovascular system - the heart/vascular system for most people, and the lungs in COPD patients and elite athletes with a very high level of training)
 
A very poor "research" project from France: "Co-survivorS, COvid 19, SURveillance, prospectiVe respIratoire, de la qualité de Vie, du stress pOst-tRaumatique et du Sommeil". Roughly: Covid-19 monitoring of respiratory prospective, quality of life, PTSD and sleep.

Basically assumes all symptoms are stress/anxiety, mental health and PTSD. Basically framed as coming from perturbed sleep. Somehow, partners with Stanford university. Looks very bad.

https://www.ledauphine.com/sante/20...endre-les-impacts-a-long-terme-de-la-covid-19
 
@Jonathan Edwards @Andy I think we urgently need ME/CFS researchers and advocacy groups to draw attention to the possibility that a substantial portion of long covid cases are clinically indistinguishable from ME/CFS and that classifying these as some new and unknown syndrome could dilute research efforts.

Not seeing the ME/CFS in long covid cases could be another chapter of ME/CFS denialism (presumably mostly out of ignorance).
 
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strategist said:
@Jonathan Edwards @Andy I think we urgently need ME/CFS researchers and advocacy groups to draw attention to the possibility that a substantial portion of long covid cases are clinically indistinguishable from ME/CFS and that classifying these as some new and unknown syndrome could dilute research efforts.

Not seeing the ME/CFS in long covid cases could be another chapter of ME/CFS denialism (presumably mostly out of ignorance).
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To me, splitting patients up on the basis of the infection that prompted their symptoms seems as legitimate as lumping them together. At the moment, we just don't know the best way of classifying patients.

If there are people that think it's best to split in this way, then I think it's premature to label them as guilty of some form of denialism. I think that we should be treading very gently until we know more.
 
In the scenario that a lot of long covid is simply ME/CFS but this is not recognized, what could happen is that research funding goes towards studies that have already been done in ME/CFS and found nothing.

What could also happen is that the CBT/GET machinery simply shifts over to long covid.

Long covid patients are also asking for diagnostic criteria that don't require a positive covid 19 test (because many patients couldn't get tested). That means this label doesn't guarantee these patients have a common infectious trigger.

That means people who previously would get diagnosed with ME/CFS could be mostly being diagnosed with long covid. The CBT/GET proponents will have a golden opportunity to continue doing what they are doing for at least a few more years simply by labelling people as having long covid instead of ME/CFS.

Using ME/CFS diagnostic criteria doesn't stop researchers from conducting studies that only look at the covid 19 subset of it.
 
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Generally a good article, no idea why anyone thought it was a good idea to ask Wessely on this topic, clearly knowing nothing at all about who he is and what damage he has done.


The scars of Long Covid

https://www.newstatesman.com/politics/health/2020/10/scars-long-covid

Speaking of the 1918 flu pandemic:
Loss of muscular energy was one of the earliest symptoms,” wrote Dr Jamieson, “and convalescents have been more struck by their astonishing lack of strength than by anything else.” He noted sluggish pulses and instances of “mental aberration” persisting far into convalescence. For some the aberration took the form of delirium, for others apathy and depression.
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The fatigue may last for weeks or months, but in most cases it improves eventually. When it doesn’t, a patient’s condition may come to resemble chronic fatigue syndrome (CFS) – itself regarded as a suite of conditions whose causes are unclear. No one yet knows how long Long Covid can last, or whether there are forms of it that will only emerge years or decades from now. One thing does seem clear, however: “The virus affects the whole body,” says Michael Zandi, a neurologist at University College London (UCL) who is studying Covid’s effects on the brain.
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Since recovery from damage to the brain and heart, in particular, can take months, many researchers view Covid-19 as an opportunity to study the long-term effects of viruses prospectively, and possibly shed light on refractory mysteries such as CFS in the process.
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“The population cohorts in which this country is a world leader will also be like gold dust,” says the psychiatrist Simon Wessely of King’s College London. The Covid-19 Symptom Study that King’s is coordinating is an example of these, but to date Wessely feels cohort studies have focused too much on hospitalised patients. Patients who never go to hospital – including many Long Covid sufferers – need more studies of their own.
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Is he involved in this study?!
One of the enduring mysteries of the 1918 flu is whether it was the cause of a subsequent pandemic of encephalitis lethargica (EL), a form of brain inflammation that is thought to have affected a million people worldwide in the early 1920s. Of those, roughly a third died, a third recovered and a third went on – years later – to develop a form of Parkinsonism.
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Collectively called tauopathies, these diseases include some rare ones that have caused generations of neurologists to scratch their heads because of their inexplicable localisation in space. One is Guam disease, which has all but vanished from the eponymous Micronesian island after causing more than half a century of misery there; another is nodding syndrome in east Africa. Guam disease resembles amyotrophic lateral sclerosis, the disease that afflicted physicist Stephen Hawking, while nodding syndrome is described as a form of epilepsy, but both have much in common with post-encephalitic Parkinsonism.
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Good to see people working how this could actually be a complete game-changer for psychiatry, a field that has completely stalled because it has long refused to look into pathogens as possible causes.
Others warn against drawing too many historical parallels with what is, after all, a novel disease. “We have to tread carefully,” says Wessely, “and not assume that previous knowledge, either from other post-viral or post infective syndromes, automatically applies to Covid-19.”

While research attempts to elucidate which historical parallels do hold, if any, he believes that the care of Long Covid patients – like that of CFS patients – should remain broad. Doctors need to provide general advice and symptomatic relief where possible, and above all listen and show kindness.
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The absolute hubris of this man, who has shown nothing but contempt and laid waste to an entire disease. And WHAT GENERAL ADVICE?! Get the hell out of here with your tired old "rousing reassurance" crap. Wessely has sent nothing but hate and contempt our way, has worked most of his career making sure we would never get anyone show us compassion, let alone listen to a damn thing we say.

What a horrible, horrible man. Sad that an otherwise good article is ruined by giving a voice to this monster, a person highly responsible for the current disaster., for thousands of unnecessary deaths and millions of lives years lost entirely to hubris by self-serving charlatans like him.
 
 
Prof Wessley’s hubris and arrogance knows no bounds. He continues to pull the wool over the eyes of health journalists and others in the medial profession. Only people with ME know what harm he has done and how galling it is to see him comment now on longcovid.

With regards to Esther and Strategist’s comments, I feel there are no easy solutions and much that could go wrong. Firstly, it’s possible that longcovid is becoming an umbrella term for those with residual fatigue and other symptoms from heart, lung or other organ damage and then those who have a symptom picture that is showing overlap with M.E, particularly the PEM/PENE. Then there may be some under the term Longcovid who are both dealing with the effects of still recovering from organ damage from CoVid and showing a symptom picture with overlaps with ME.

However, it may be that those showing a similar symptom pattern to ME still may not have the identical illness so conflating them as the one and the same will bring its own problems such as a research study selecting a mixed group of longcovid and ME patients when we don’t know if they are the same or just with some overlap. It would seem caution is needed at this stage and they should be not conflated into one group in any research studies yet.

Finally, I have noticed the media articles on Longcovid never refers to the PEM/pene that many with longcovid seem to be describing when talking about their symptoms. Media reports only refer to fatigue with regards to the exhaustion. I presume these journalists are getting this info from the medical professionals.

I said on another thread here that the info on the newly announced longcovid clinics also refer to fatigue but no mention of post exertional symptom exacerbation. Copying what I wrote on the other thread, the info on the new longcovid clinics say they will amongst other things offer a physical assessment, which will include ‘diagnostic testing, to identify any potential chronic health issues.’ The info on the longcovid clinics mentions a CPET test but it makes no mention of 2 day CPET testing.

As Trish wrote earlier this one day CPET test will probably be to assess lung and heart functioning. As we know a one day CPET test is of little use in assessing energy dysfunction as it does not show up the energy dysfunction that shows up on the second day in pwme and which may be happening in longcovid patients too. 2 day CPET testing would be one way to see if it is. Also some longcovid patients if they are experiencing the same energy dysfunction after activity as ME then there is the risk they will be made worse from the one day CPET testing that they will have to undergo from time to time.

I fear as the clinics will not have the tools to recognise and identify this in the physical examination and if all other tests come back normal with the existing available testing or show organ damage with its own treatment pathway, then longcovid patients will be shunted across to the IAPT pathway for all other symptoms (the info on the clinics said some will be put in the IAPT pathway) with its focus on anxiety and depression which will be at best a secondary problem in some patients after having to adapt to a big change in health with an uncertain prognosis. So the longcovid clinics would then make the same mistakes as the current NHS ‘CFS’ clinics.
 
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strategist said:
@Jonathan Edwards @Andy I think we urgently need ME/CFS researchers and advocacy groups to draw attention to the possibility that a substantial portion of long covid cases are clinically indistinguishable from ME/CFS and that classifying these as some new and unknown syndrome could dilute research efforts.
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I am not sure that anyone needs to draw attention to this. It is transparently obvious to everyone. It is just that how people then pump out hot air on twitter varies a bit. Nobody misses the connection, even if they skirt round it.

Useful research will depend on someone intelligent making an original observation that at present is completely unpredictable. The current sound of hot air bagpipes may be deafening but it will pass.

I am not very convinced that the appearance ofCovid is going to add much to the story of ME research, although if and when it becomes clear that Covid19 ranks alongside EBV and Q fever as a cause something may be learnt.
 
anniekim said:
However, it may be that those showing a similar symptom pattern to ME still may not have the identical illness so conflating them as the one and the same will bring its own problems such as a research study selecting a mixed group of longcovid and ME patients when we don’t know if they are the same or just with some overlap. It would seem caution is needed at this stage and they should be not conflated into one group in any research studies yet.
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The current situation is already that one cannot assume that all ME/CFS patients have the same disease.

Pathogen-specific subtypes of ME/CFS are very plausible but as far as I know this idea has not led to aything useful yet.
 
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If Wessely valued consistency he should be claiming that in Long Covid the precipitating virus has cleared and what is now important is the perpetuating factors. We know what those are. The discussions from the CIBA conference will provide a goldmine of useful quotes. I must find the book. It can't be far away.
 
strategist said:
The current situation is already that one cannot assume that all ME/CFS patients have the same disease.[/
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Tom Kindlon said:

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@Tom Kindlon, sorry I know this was posted over a week ago. One concern I have is there seems to be some post viral syndromes that can last a good while, a year or so, but ultimately are self limiting and need to be differentiated from ME. Such as say what can happen to some people after glandular fever (mono). I suppose it could be argued referring to it as ME/post viral would perhaps signify that distinction? Then there is the issue that not all people with ME say their ME started after a virus, although it could be there is one at a sub clinical level...
 
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