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

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.

https://www.youtube.com/watch?v=fv_Kb1iBb14

 

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.

 

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.

 

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/

 

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.

https://twitter.com/user/status/1306221741337911297

 

Youtube commends tend to be cesspools even on benign topics and COVID is highly politicized so mostly this is just trolls and automated comments.

 

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:

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")

ETA: There's a comment by ME researcher Bo C Bertilson, but he doesn't mention ME.

 

“It’s important to reteach the body that it doesn’t have to be afraid of breathing," Sound familiar?

 

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 ).

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:

 

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.

 

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.

 

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.

 

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.

 

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