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

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Aaarh, the RSM.

This was the line up of presenters at their April 2008 CFS Conference, archived on one of my old sites, at which Dr Alistair Miller was also a presenter:

https://readmeukevents.wordpress.com/2008/03/23/rsm-cfs-conference-programme/

And an extract from some correspondence with Dr Miller:

https://readmeukevents.wordpress.co...r-alastair-miller-speaker-rsm-cfs-conference/


"...There is no doubt in real life clinical practice that there are many patients who have serious symptoms of CFS/ME with absolutely no suggestion of any psychopathology; there are also large numbers of patients who have severe psychological problems and there are many in whom psychological and physical problems are inextricably intertwined. . .I hope folk from the ME/CFS patient/carer/”activist” community will view this conference with an open mind and a forum where genuine debate about this perplexing condition will take place so that we can all work together to overcome the effects of this devastating illness."
 
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Dx Revision Watch said:
Dr Carolyn Chew-Graham, GP Principal in Central Manchester and Professor of General Practice Research at Keele University.
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David Tuller wrote last year to Chew Graham:

Earlier this evening, I sent the following e-mail to Carolyn Crew-Graham, a professor of general practice research at Keele University. Professor Chew-Graham is the lead author of METRIC, the atrocious online training course hailed last week by Steve Brine MP as addressing “misconceptions” about the illness variously called ME, CFS, CFS/ME and ME/CFS.
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Professor Chew-Graham is a co-author of the FINE study, which tested a combined form of CBT and GET called “pragmatic rehabilitation” for home-bound patients. As reported in The BMJ, FINE produced null results for its two primary outcomes of fatigue and physical function.
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https://www.virology.ws/2019/01/28/trial-by-error-my-letter-to-professor-chew-graham-about-metric//
 
Tom Kindlon said:
https://www.dailymail.co.uk/femail/...-Healthcare-professionals-share-symptoms.html







https://twitter.com/tomkindlon/status/1307661091837751300?s=21
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Martin Marshall, GP & chair of the Royal College of GPs: “'I don't know whether #longCovid will turn out to be a similar to #chronicfatiguesyndrome, but if it is than we can expect a similar small proportion of patients with long term disability. That would be dreadful’”
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But. You do nothing about the current patients. Literally. In fact you refuse and reject the premise that there is anything to do. The RCGP has been abused as a weapon against the ME community, largely thanks to the rotten influence of Gerada and Wessely. Yet it would be 'dreadful' if a small fraction were added to it? So what does that even mean?
 
Study sheds light on coronavirus ‘long-haulers,’ but experts still lack clear picture

https://globalnews.ca/news/7335744/coronavirus-long-hauler-study/

Generic coverage, not very informed. Canada has been doing especially poorly in terms of reporting, always presented as BRAND NEW!. That ICanCME collaboration is not doing a damn thing. Thanks for nothing, I guess. It was worth a try but what's the point of "recognizing" a disease if you don't even recognize it when it happens?

Although at least there is this rational perspective on the very relevant issue of systemic dismissal of chronic symptoms:
Sometimes I’m referred people who believe they have chronic Lyme disease and when we investigate them fully, we find out, in fact, the symptoms they’re having are caused by a heart problem or caused by something like Lupus. It’s the careful analysis we need to make sure they don’t have another cause for those symptoms.
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rvallee said:
Generic coverage, not very informed. Canada has been doing especially poorly in terms of reporting, always presented as BRAND NEW!. That ICanCME collaboration is not doing a damn thing. Thanks for nothing, I guess. It was worth a try but what's the point of "recognizing" a disease if you don't even recognize it when it happens?
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The article mentions developing an autoimmune response, this is what I've been hearing a lot about from infectious experts on tv in the last few months in Canada.
 
Just watched this morning's broadcast by the UK's Chief Medical and Scientific advisors. No mention of ongoing problems after Covid.

In one sense, not surprising: we don't even have a reliable prevalence rate yet, let alone know whether most people will eventually recover, and anyway such briefings shouldn't consist of an information overload.

In another sense, it is: there were clear warnings about the grim consequences of the disease, and even if it does turn out to resolve within a year, this is clearly one of them. It's long enough to lose a job, a home, or get into severe and long-lasting financial difficulties.
 
Kitty said:
Just watched this morning's broadcast by the UK's Chief Medical and Scientific advisors. No mention of ongoing problems after Covid.

In one sense, not surprising: we don't even have a reliable prevalence rate yet, let alone know whether most people will eventually recover, and anyway such briefings shouldn't consist of an information overload.

In another sense, it is: there were clear warnings about the grim consequences of the disease, and even if it does turn out to resolve within a year, this is clearly one of them. It's long enough to lose a job, a home, or get into severe and long-lasting financial difficulties.
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Especially with medical staff being in the risk group of catching it. I don't think many hospitals can afford their doctors and nurses being absent for weeks or months. During a pandemic.
 
chrisb said:
The question is, is this a deliberate strategy, or tactic, because they think not mentioning it will avoid psychogenic ailments, do they not consider long term effects important ,or has this simply not registered with them?
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Yeah, is it incompetence, or corruption?

If Long Covid is not acknowledged, those patients will have challenges receiving disability from govt or corporate insurers.
 
Ed Yong in the Atlantic today. The article is mostly about cardiological issues concerning Covid-19, but ends with:

The heightened focus on COVID-19 allows hype and sensationalism to flourish, but also shines a spotlight on phenomena that have long been consigned to the shadows. For example, many of the lingering symptoms that long-haulers are facing are similar to known chronic conditions such as dysautonomia and myalgic encephalomyelitis, which can be triggered by other viral infections. These illnesses have been dismissed and trivialized for decades. Few doctors know how to deal with them. Few scientists study them. That might change as thousands of people with similar problems are emerging all at once, and are pushing for recognition and research. In a pandemic, experiences that might once have been dismissed grab attention. Perhaps that tells us they should never have been dismissed at all.

The Core Lesson of the COVID-19 Heart Debate
 
Tom Kindlon said:
Hear and see @Carolyn Wilshire on TV

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It's annoying to still see the trope of "this illness used to be stigmatized" going on. It's technically true that it used to be discriminated. It still is, but it used to be, too. But the far more important point is that it currently is 100% discriminated against. Nothing has changed. The state of discrimination remains total. It's the difference between talking about a history of segregation and ongoing segregation, time is very relevant here. The default standard of "care" today remains: none. Absolutely none and on principle, that is medicine goes out of its way to maintain that and reject any change to this state of systemic discrimination. Because we ask. Constantly. And they always say no, absolutely no and never. Even when they are forced to admit it's a failure they still do nothing, they just don't care.

I don't know how that point is so often made without being corrected. I guess journalists don't want to paint a bleak picture but then that is exactly how the picture remains as bleak as possible. I see it often and it annoys me so much.

Maybe it's worth writing to the newspaper. I don't know. Because this argument is so often made that it feels like whack-a-mole and I can't even begin to imagine where they get it. Who tells them that? Or is it just that they hope? Or that they somehow trust when medical authorities who push the CBT/GET nonsense tell them that it's all under control now because BPS? Where does this blatant lie come from?

There is definitely an ongoing war in Ba-Sing-Se. If you don't know that reference go and watch Avatar: the last airbender, you will not regret it.
 
ScottTriGuy said:
If Long Covid is not acknowledged, those patients will have challenges receiving disability from govt or corporate insurers.
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Yes, lots of longhaulers in Sweden are already having problems receiving disability from the social insurance agency :( It's the same problems very frequently experienced by pwME (including myself) since 2008.

Sveriges Radio: Överläkare: Stoppa utförsäkring av covidsjuka
https://sverigesradio.se/artikel/7548211

Google Translate, English ("Chief Physician: Stop denying covid patients sickness benefit")
Sveriges Radio Google Translate said:
No authority Ekot speaks to wants to estimate the number of victims, but the opinion analysis company Novus estimates that around 150,000 Swedes themselves have experienced covid-19-like symptoms for more than 10 weeks.

14 people that Ekot has been in contact with describe severe persistent symptoms and at the same time state that they risk losing or have already lost their sickness benefit, not least in connection with the fact that they go over 180 days with sickness compensation, the time when the Swedish Social Insurance Agency usually makes tougher demands about testing the ability to work against all ordinary jobs in the country.

According to a newly started patient association for covid disease in Sweden, with just over 700 members, it is more the rule than the exception that this group is distrusted by the Swedish Social Insurance Agency.
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Here's what a cabinet minister answered when recently asked about this by another politician:

Riksdagen: Skriftlig fråga: Utförsäkring av covidsjuka
https://www.riksdagen.se/sv/dokumen...ftlig-fraga/utforsakring-av-covidsjuka_H81115

Google Translate, English
The Swedish parliament Google Translate said:
[...] The government has taken a number of measures to mitigate the consequences of the pandemic. Among other things, the government decided in June on temporary exemptions which means that sick leave under certain conditions should not be tested against normal work after the rehabilitation chain day 180 and day 365. The deviation from the time limits was implemented to create financial security for those who can not receive the care or rehabilitation they need to be able to return to their work and this is due to covid-19. The Government has also commissioned the Swedish Social Insurance Agency to analyze the effects on health insurance and the sick leavers' right to compensation due to covid-19. We will have a dialogue with the Swedish Social Insurance Agency to inform us about how the authority uses the temporary provisions.

It is the consequences that an illness has for the individual's ability to work that governs the right to compensation in the health insurance. The right to sickness benefit is not in itself determined by what diagnosis you have. The background to this is that a certain disease can affect people in different ways. [...]
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The government has taken a number of measures to mitigate the consequences of the pandemic. Among other things, the government decided in June on temporary exemptions which means that sick leave under certain conditions should not be tested against normal work after the rehabilitation chain day 180 and day 365. The deviation from the time limits was implemented to create financial security for those who can not receive the care or rehabilitation they need to be able to return to their work and this is due to covid-19.

It is interesting that the government agency seems to see rehabilitation as a sausage machine that spits out healthy people after a certain number of days. And yet as far as I know there is no reason to think rehabilitation has any place in this problem.
 
Not sure which is the best thread for this Cort Johnson blogpost
Ian Lipkin on Long Hauling with the Coronavirus, a Possible B-cell Subset, and Protein Biomarkers for ME/CFS
antibodies-III.jpg

Ian Lipkin talks on his own long hauling experience with the coronavirus, and what he expects from the coronavirus in the future, as we cover Lipkin's recent ME/CFS proteome study which identified a possible B-cell subset and biomarkers. Check all that out in the SImmaron Research Foundation sponsored blog:
http://simmaronresearch.com/2020/09...-b-cells-biomarkers-chronic-fatigue-syndrome/
 
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