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

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Some French coverage in national media in Canada. Not bad, though many statements that this was completely unexpected, nobody could have predicted and this is especially difficult because we have to start from scratch. Despite mentioning mononucleosis, which, you know, makes it expected. It's both, actually: brand new and unexpected but also a common thing. Which, yeah, just about sums up the clusterfuck we are in.

Because we did predict and warn about it, as did many. Not unexpected. In fact the failure of medicine to prepare for something that was predictable and happens regularly is something that needs serious accountability. This messaging of a familiar-but-also-totally-unexpected thing needs to be met head-on, it is blatantly false. We're still in early days and already there is a revisionist history. Ugh.

 
ukxmrv said:
Most of them seem to be from Covid-19 deniers so anyone with post Covid is a hypochondriac (the vile comments). It's an interesting new stigma variation.
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I think these are the people most terrified of Covid - why else the need to deny facts and the inability to tolerante ambiguity.

It can only happen to others, to crazy ones or unhealthy people that don't do glutenfree yoga and take their vitamines and think positive or do whatever the right thing is to do to not become or stay ill.
 
I was listening to the September 12 podcast (TWIV 663) of “this week in virology“ and Dr. Racanciello said he recently visited Ian Lipkin, who was infected with covid-19 this spring, and Dr. Lipkin said that he loses his breath if he walks up a mild incline. sad to hear.

I thought it was an enlightening podcast episode. It included a good summary and discussion of the USA vaccine trial methodologies, etc.
 
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LIVING
11 Hints You’ve Already Had COVID
September 15, 2020
5 Min Read
https://kyrnews.com/living/22614/11-hints-youve-already-had-covid/

Fatigue

Tiredness is common when recovering from illness, and people who have COVID have reported fatigue that can range from mild to crushing and can last for weeks or months. Dr. Anthony Fauci, the nation’s top infectious-disease expert, likened the phenomenon to chronic fatigue syndrome. “We’re starting to see more and more people who apparently recover from the actual viral part of it, and then weeks later, they feel weak, they feel tired, they feel sluggish, they feel short of breath,” he said on Aug. 13. “It’s very disturbing, because if this is true for a lot of people, then just recovering from this may not be okay. You may have weeks where you feel not exactly correct.”
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Sick and tired of Covid-19: The 'recovered' patients who aren't getting better
9:22 pm on 15 September 2020



By Louise Thornley*, Reporter

For a subset of Covid-19 survivors, the illness has lingered. Slammed by fatigue, pain, headaches and more, they're just not getting better. What's going on, and what could help?

https://www.rnz.co.nz/news/on-the-i...-recovered-patients-who-aren-t-getting-better
She says she has fatigue condition herself. Quite a bit of discussion about ME.

 
A few weeks ago I noticed a rehabilitation program that was particularly full of woo, calling it a 'bootcamp': https://www.s4me.info/threads/bps-attempts-at-psychologizing-longcovid.16013/page-7#post-284044.

A report on this program, which is frankly excessive on the woo woo, although it was built entirely on assumptions built for standard pneumonia rehabilitation:


Breathing Exercises For Chronic COVID-19: What They Are and How They Help

https://www.verywellhealth.com/breathing-exercises-chronic-covid-19-5077693

I won't even bother quoting the woo, it's... it's really something.

And yet, unlike our BPS overlords, even people prone to Deepak Chopra-level of woo are capable of actually learning from experience, or at least seemingly:
Mackles and Greenspan emphasize the importance of long-haulers not overdoing it. Scientists aren’t yet sure what the exact mechanisms behind this are, but when long-haulers exert too much physical effort—whether that’s by taking that extra step, or in some cases, that extra deep breath—they sometimes circle right back to where they started. This could be a result of chronic fatigue syndrome (CFS), which has been found to emerge after a viral infection.

“What we found when we started working with these patients is that Bootcamp would be working for them and they would be feeling great, and then, all of a sudden, out of nowhere, they can’t get out of bed for multiple days," Mackles says. "We’ve learned to make the process incredibly slow—slower than our original Bootcamp that was developed for people with cardiovascular and pulmonary diseases."

Joel Hough echoes that sentiment. The 56-year-old software engineer based Manassas, Virginia, tells Verywell that because of a COVID-19 infection in April, he developed CFS-like symptoms in May. He initially pushed himself too much on breathing exercises and bike riding, and wound up immobile for over three days. Since discovering this Bootcamp and its pacing practices, he says his heart rate is lower, his oxygen rate is higher, and he is slowly recovering—making sure to moderate his movements.
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It still seems to assume deconditioning. Or whatever. I'd frankly rather people like that not be involved at all, we don't need woo woo, we've had plenty of that for decades. So many of the BPS assumptions about fear, motivation and deconditioning are used as fact. Because this is not an adequate model of rehabilitation.

Besides lung rehabilitation, there is nothing to support the idea that this plays a rehabilitative role, it's nothing but a belief that it should. It's nothing but wishful thinking. The whole pragmatic thing is completely useless without an actual theoretical understanding, it's built to cherry-pick and enable biased thinking. The whole "just try" approach is a poison pill.
 
Opinion piece written by a MD/researcher at Karolinska Institutet, published in the Swedish Medical Association's medical journal.

Läkartidningen: Primärvårdens viktiga roll för förståelsen av covid-19-sekvele
https://lakartidningen.se/opinion/debatt/2020/09/primarvardens-viktiga-roll-for-forstaelsen-av-covid-19-sekvele/

Google Translate ("The important role of primary care for the understanding of covid-19 sequelae")
Google Translate said:
Primary care has an important role to play in future care and in learning about the late effects of covid-19. The problem we have with diseases like covid-19 is that we cannot invoke objective findings when we do not have strong enough lenses for the "microscope". Instead, a learning approach is needed. The simplified heuristic thinking that fits precision medicine does not fit into the learning approach we need now [3, 4].

Rejecting a patient's story due to a lack of diagnostic tools is not only an example of a lack of empathy (alleviate and comfort if one can not cure) and professionalism, it is also a sign of a serious lack of understanding of the role of science in medicine. It grossly reduces the potential contribution of primary care to the better scientific understanding of covid-19 sequelae that we so urgently need.
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ETA: There's a comment by ME researcher Bo C Bertilson, but he doesn't mention ME.
 
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I noticed in the video that @Arnie Pye posted (in message 1701) that the UK official was pretty adamant that developing longCovid was not related to the severity of the illness.

This runs contrary to the 2006 Dubbo study, where post-infectious development of ME symptoms was linked to self-reported symptom severity.

The longCovid cases seem to be attracting a lot of attention, at least compared to historical cases of ME. I thought this might be due to there being more Covid cases during the pandemic as compared to the number of influenza cases seen annually (even though post-infectious ME seems to follow a variety of infections - not just influenza).

I'm not really sure of the number of annual ME/CFS cases in the US. I don't even think ME/CFS is reportable (which, of course, looks just brilliant now :rolleyes:).

So far, however, the number of Covid cases in the US has not even equaled the low end of the number of the influenza cases seen in an average year in the U.S. (let alone any other suspected viral triggers of ME).

Up to this point, there have been about 6.8 million U.S. cases of Covid. Historically, annual US influenza cases range between 9.3 and 45 million.

So it would appear that the seemingly high number of longCovid cases is not due to the sheer number of Covid cases.

It could be that longCovid is attracting more attention than post-infectious ME simply because it is Covid-related, but if there are more longCovid cases than annual ME cases, and if longCovid is not related to the severity of the Covid infection, the question is "why?" What makes this virus particularly "good" at triggering longCovid?

The answer to that question might answer a lot of questions about ME.


Annual US flu statistics:

Annual Flu.jpg
 
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Is there a problem in comparison with the Dubbo study? Surely that only investigated cases of clear infectious origins. I presume that cases with insidious onset, which may not have had clear infectious symptoms which could be classified, could not have been included.
 
chrisb said:
Is there a problem in comparison with the Dubbo study? Surely that only investigated cases of clear infectious origins. I presume that cases with insidious onset, which may not have had clear infectious symptoms which could be classified, could not have been included.
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Yes - I'm just comparing infectious onset (like in the Dubbo study) where severity seemed to be a factor, with infectious Covid onset, where severity doesn't seem to be a factor. I guess the point I was trying to make is that if infectious severity is not a factor in longConvid, then the virus (perhaps in conjunction with individual predisposition) must have some other quality that ultimately triggers the symptoms of longCovid.

Just speculating, but could insidious onset be an asymptomatic viral infection? Do asymptomatic Covid patients ever develop longCovid?
 
I feel reasonably certain that insidious onset cases were mentioned as early as the LA General Hospital outbreak though there was the same lack of positive response to tests as in the acute onset cases. The suggestion seemed to be that the original iinfection was asymptomatic, but the course of the illness similar, if not identical. By analogy one might expect long covid not only in those with mild infection , but those with no apparent initial infection. Will the epidemiology be done?

Obviously we stand to be be corrected by some of those with less than 6 months knowledge of ME.
 
I think long Covid may be getting more attention than 'long flu' or 'long glandular fever' for many reasons.

First, because Covid itself is such a major news story, as both a new illness and one that has turned everone's lives upside down, and put a lot of people in hospital, so long covid is getting attention.

Second because 'long Covid' seems to be different from 'long flu' because it is a mix of people with ongoing organ damage, blood clotting problems, breathing problems etc, mixed together, and overlapping, with people developing profound fatigue, PEM, brain fog etc that look more like ME.

So not only are they dealing with PVFS, ME/CFS that some people get after flu or glandular fever, they have the added worry of organ damage to heart, lungs, kidneys, strokes etc.

Third, because the internet has enabled them to gather very quickly into large forums and carry out their own surveys and publicity.

Fourth, because, as a new illness, they don't automatically carry the burden of decades of misunderstanding and stigma, and they are reacting with shock and sometimes vocally, to being fobbed off with diagnoses of anxiety etc. Having that happen to each of us with ME individually, and only gradually finding other patients to discuss this with, and all having different stories, makes us less powerful than a sudden influx of people with a 'new' condition.

I'm not surprised some, even those with ME/CFS symptoms, don't want to be immediately associated with ME/CFS if they look at the UK NHS or NICE guidelines for these and find them as profoundly unhelpful as we do.
 
Flu has never been a major trigger for ME. It can give a post viral lasting a few months but for actual ME it is rare. That is why there was an outcry when SW looked at flu patients prospectively and decided that CFS was not viral.

The Dubbo studies were done by BPSers. Andrew LLoyd was right there alongside SW when CFS took over and ME became psychological. Not saying it makes them wrong but it never inspired confidence.

The onset infection for ME can be very mild or subclinical. It is also more likely if someone gets 2 infections at the same time. That inplies that it is not the virus so much as the immune system not being able to prevent the virus getting deep into the body. Traditional viruses associated with ME like enterovirus and EBV have ways to evade the immune system and long covid may well be caused in the same way.
 
If it's not already been noted here, @maxwhd on Twitter has highlighted that Jessica Bavington's Vitality 360 company is now touting for post COVID-19 patients:

https://vitality360.co.uk/post-viral-fatigue

Post-viral fatigue

Post-viral fatigue & COVID-19


and a online training and mentorship course

Date: 27th October 2020

https://vitality360.co.uk/training-and-mentorship

"Understand more about what ‘long tail’ COVID-19 symptoms are & learn about how our assessment/screening process considers red flags related to the symptoms this group is reporting..."


I expect Prof Helen Payne will be next.
 
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To think, it was to avoid this sort of quackery that "Campaign against Health Fraud" was set up. But then they turned against the patients. Because, if cancer patients could accept a psychological component to their illness, why couldn't ME patients? The world is mad.
 
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Great interview in the Norwegian newspaper Dagsavisen with journalist, author and physiotherapist Jørgen Jelstad. He wrote a very well researched book about ME in 2011 and has since written about ME and in particular research into ME on his blog and in newspapers, as well has holding numerous lectures on the subject. He has been working on a second book about ME which will soon be published. His mother is a severe ME sufferer.


- But no one is protected against disease. It is disturbing how society treats the sick - and with ME you get the extreme version. If you are not able to lift the water glass to your mouth, talk or sit upright, you have no choice anyway. No one chooses such a life. I think we are approaching a social rights struggle, which has not quite reached the surface yet. It's a battle we need.

Dagsavisen fremtiden: - Kan få en runde med flere ME-syke i etterkant av pandemien
google translation: - Can get a round with several ME patients after the pandemic
 
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