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

Since loads of people have had Covid and loads of people have RA with flares there are going to be cases of RA after Covid and flares of RA after covid. The theorising is empty speculation based on ideas from the last century that never panned out.

 

https://twitter.com/user/status/1331922938526838786


Thread about this article here:
https://www.s4me.info/threads/role-...s-cov-2-‘long-haulers’-2020-tate-et-al.18008/

 

That is where the evidence is. As we get more evidence we have to pay attention.

 

Annoying to see the BBC always bungling their reporting of ME. For the last few months, it is mostly the ME and chronic illness communities that have helped with LC, providing advice that goes completely against conventional wisdom. I've never seen "official" sources being shared as helpful, always stuff made by or for the ME community. There is no "may help", it's already been the case the whole time.

And figures they'd say it's not the same by completely botching its definition as just fatigue. Lazy reporters? Malicious editors? The BBC has been especially incompetent in its reporting on the matter so far. Shamefully bad at times. And yet again.

No, LC and ME and not the same. But the overlap is immense, I'd say about 80% of LC is ME and it's probably higher. Depending on the definition of ME, of course.

 

https://twitter.com/user/status/1332001912347095044

 

They had coronavirus. Now they’re showing up at memory clinics with serious cognitive loss

Somehow, in hindsight, such reaction as "what, you think you have actual fog IN your brain?" on and on for decades was not exactly smart. Then again, it was obviously very not smart at the time but in hindsight it's a special kind of very not smart.

https://www.nj.com/coronavirus/2020...mory-clinics-with-serious-cognitive-loss.html

Again, nothing new:

Actually you absolutely definitely do not, in no way, "know this very well" and it's precisely this unexplained belief that makes it impossible for medicine to learn from experience here. Stop it and get learning.

So far everything indicates that there no such risk factors so stop speculating what you hope to find and do the science thing where you just follow the evidence.

OK we're all fucked. Until people capable of learning from experience have the opportunity to do the science thing instead of... whatever this is.

 

"The trauma of having a major, life-threatening medical condition can leave people functioning at less than their cognitive best, Rondeau adds".

So it's the 'trauma' of having an illness that is driving them to remain sick, and not the actual infectious pathology.

 

Some journalist ought to interview Paul Cheney to discuss the cognitive impairment he found in his patients, what he reported to the CDC, and what they did about it.

 

The medicos proposing the psychobabble views are indeed not very rational. They are so special that [satire warning] they should have their very own institutions where they can propose all these things to their heart's content and never be bothered with the real world again.

 

BBC video with Dr Shepherd saying LC and ME not the same. As per the above comments, how can he be so definite? Or was there some BBC editing?

In ME Essential Magazine P4, he writes under the subtitle post/Long Covid is not simply the same as MECFS " ..some people with Post/Long covid have an illness and symptoms that are almost certainly the same as PVFS that often precede a diagnosis of ME/CFS where an infection is believed to be the trigger. Some people with Post/long covid are being diagnosed with MECFS as their symptoms persist for more than 3-4 months.."

This magazine contains a report on the IACFS-ME 2020 conference including studies tracking the conversion to ME.

 

Q&A: Neurological symptoms of COVID-19 remain an ‘evolving story’

https://www.healio.com/news/neurolo...-symptoms-of-covid19-remain-an-evolving-story

Worth reading in full, interesting discussion on broad neurological aspects.

It's far more difficult to dismiss when medical colleagues echo the same facts as the patients:

 

Ultra-marathon runner, 40, reveals how he manages 'living hell' of long COVID

https://ca.news.yahoo.com/long-covid-management-support-152422792.html


Especially interesting on the "pushing through" mindset and how harmful it is.

 

Comprehensive health assessment three months after recovery from acute COVID-19

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa1750/5998118

 

Kiwi Covid-19 long-haulers reveal 'heart-breaking' ongoing battles as group feels abandoned by health system

https://www.tvnz.co.nz/one-news/new...g-battles-group-feels-abandoned-health-system

May be a case of be careful what you wish for.

Well-meaning but he doesn't quite get it, does he:

The article links to this Ministry of Health document: Guidance for the rehabilitation of people with or recovering from COVID-19 in Aotearoa New Zealand

It tries to cover all the different kinds of post-covid problems so this bit is sensible enough, albeit so vague as to be almost meaningless:

But then it gets drowned in stuff like this (aimed generally, without distinguishing whether the patient's issues are lung damage or post-viral fatigue syndrome; risk of ME isn't mentioned, no surprises there):

https://www.health.govt.nz/system/f...g-covid-19-aotearoa-new-zealand-8july2020.pdf

 

Covid-19 patients with persistent symptoms who recover at home are MORE likely to have health problems three months later than those who were treated in ICU, study finds

https://www.dailymail.co.uk/science...worse-overall-health-long-term-going-ICU.html

 

Some? Rather an understatement!

 

Most that have a CCC diagnosis can’t work.

 

https://register.gotowebinar.com/register/6393499997621332750

 

One difficult issue with ME is to explain the cases that don't have a clear infectious origin, or at least not as clear as the 80% of cases that do. I've long strongly suspected that it was likely due to mild cases that seem so benign as to be forgotten and a slower onset. I'm in that camp. There was that weird episode a few months before it all went to hell, some really weird insomnia and odd dizziness that came and went. I couldn't sleep at all for a night. Mostly that. It was weird but otherwise unremarkable since it mostly went away.

I've posted a few times with examples of testimonies that fit that pattern, people initially either barely ill or who have "recovered" from acute Covid, to the point of being able to function normally for weeks, sometimes months, before the typical ME course began. Sometimes there is little remarkable improvement in-between. Sometimes there is, creating a separation in the timeline that makes a remarkable event seem unimportant.

This trend continues unabated. I am pretty certain this explains most of those cases. An initial mild infection that resolves enough to feel back to normal, with a slower onset of ME symptoms happening later. Enough that people would normally not even think about it, given how usual it is to have such mild illness.

The sheer number of those cases, people who were "recovered" for weeks, months, before they developed the symptoms may be the missing link, if not for all cases certainly a solid % of them. Explaining a large % of a remaining 20% or so gets us very close to a full deck.

Of course there are still some cases that are harder to explain, from accidents, even pregnancies, or surgeries. But can anyone name a more iconic duo than pathogens and opportunistic infection, taking advantage of a weakened body state, especially if latent pathogens, of which there are many, play some role?

This is one example of many, I don't keep rigorous track, I couldn't even if I wanted to. But threads like this one are pretty representative of that pattern: Am I a long-hauler?. A pattern that would normally be missed entirely. It's so unremarkable otherwise. This is the stuff that completely breaks standard medical practice. It takes special care to notice it. Or a pandemic. Whichever comes first, I guess.

 

Found this article about Karyn Bishof, the woman who created The COVID-19 Long Hauler Advocacy Project and who will be participating in this Dec. 9th webinar.

Here's the twitter announcement of the same webinar:

Code:

https://twitter.com/C19LH_Advocacy/status/1330980623805198337

https://twitter.com/user/status/1330980623805198337