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

I just read something that reminded me that NICE guidelines for “CFS/ME” currently use a 4-month wait period which means by these criteria, some COVID cases could now be eligible for a diagnosis. These criteria are fairly loose so a lot more would satisfy them than say the ICC ME criteria.

 

https://twitter.com/user/status/1284805182702809093


"Mystery", I guess is one consequence of denial.

ABC News is one of the most watched nightly news in the US.

 

Chicago Tribune: COVID-19 patients could be at risk for chronic fatigue syndrome: "Your whole life can change if you get this"

Jason says that when chronic illness sets in, patients tend to question why they can’t resume their previous lifestyle. But if researchers get out ahead of this now, the medical field can start finding ways of accommodating people with post-viral fatigue, being sensitive to their needs.

“That’s what’s important,” he said. “We don’t want to retraumatize them or stigmatize them as if this is something that is their fault. Fatigue and pain are primary reasons people go to their physicians. The problem is if you see 25% of your patients are fatigued, and someone comes in with some kind of post-viral fatigue, they just get put into that larger category and doctors don’t understand that one can be much more serious and much more limiting.”

 

Hey, great article!

Strong start:

I will very much be saying WE TOLD YOU SO until my dying breaths. Many great quotes.

 

https://edition.cnn.com/2020/07/18/health/long-term-effects-young-people-covid-wellness/index.html

I'm disappointed that Ryan, who has ME/CFS and help create the documentary The Forgotten Plague, didn't mention ME/CFS in this. Though I suppose there is a possibility that an earlier draft did mention it.

 

Andrew Gywnne talking about his post-covid symptoms could be me talking about my post-infectious symptoms 37 years ago.

It does seem like there are at least two (possibly more) distinct, but not necessarily mutually exclusive, post-Covid processes that can occur. One sounds like the result of lung damage - i.e. low work capacity due to insufficient oxygen, while the other sounds a whole lot like ME/CFS.

It's kind of amazing to hear post-Covid patients talking about things as specific and unusual as "word finding" problems, which I've only heard of in relation to ME/CFS. Hopefully, this will turn out to be a short-lived, post- infectious syndrome for most of these patients - but its similarity to ME/CFS (except for duration, so far) certainly seems to be put the lie to the idea that ME/CFS symptoms are the result of "deconditioning."

 

People like SW often retweet things they haven't actually read...

 

The last bit could apply to millions of people for many many years:

"They're going to be penalising people who are unwell..."

 

Pariante is another of SWs proteges.
https://www.cambridge.org/core/jour...-c-infection/ADC138DA6D536B3535EC0F72237D52A6

 

BBC Radio 4 Programme You and Yours today discussed Covid-19 with at least 2 mentions of ME/CFS. You can listen here: https://www.bbc.co.uk/programmes/m000l0rk

 

Really impressed by this. You could hear him slowing dow and struggling to find words!

 

A couple of things strike me about the interview. It seems much easier now to describe the condition now that the descriptive vocabulary is available, even if far from perfect. Forty years ago it was a nightmare trying to find words when no-one, or no-one you knew, knew of the possible existence of such a condition.

It will be interesting to see parliamentary interventions on post-covid matters and compare them with actions taken previously on ME or PVFS related matters.

 

Two thirds of nurses recovered from COVID still experiencing fatigue

(In Ireland)

https://www.inmo.ie/Home/Index/217/13598

This could have stopped at Royal Free. Instead it was allowed to fester and grow into a massive problem. Denial is not a serious position in any profession.

This whole thing where we lack a basic vocabulary to talk about things is very problematic and amateur:

Here fatigue is used to mean something different than what it means in other parts of the same report. What a confused mess. Sort out your crap, medicine, this is embarrassing.

"Recovered"

I imagine physicians likely have similar numbers. It costs about $1M to train a doctor. That's a very significant waste that health care systems are ill-equipped to deal with.

We told you so.

 

Medics With 'Long COVID' Call for Clinical Recognition

https://www.medscape.com/viewarticle/934287

Same reaction from the patient community: the data are not reliable because not all the relevant questions are being asked. Exact same reaction from the ME community to decades of doing that...

Oh, it's not "just fatigue"? Weird how nobody has been pointing that out for decades. Oh, wait.

Nothing beats lived experience to understand the severity of a disease. But this is a very lousy system to work with if we expected all oncologists to live with cancer or any combination thereof.

Can we now move on from the stupid behavior junk? Or do enough physicians have to go through the insult of gaslighting and iatrogenic harm to get this moving?

 

It takes a critical mass of medics to be affected to change things. Only when the glass houses have broken under the weight of stones will enough light be cast to see a clearer picture.

Similar to professions such as police. There was a terrible junction on a main road near us. Guaranteed fatal accidents for year upon year. When this happened to the traffic cops themselves the junction was quickly revised and speed reduction introduced along the stretch of road. Funny that.

 

@rvallee Aren't you forgetting something? This all counts for nothing

In addition, we believe that understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it. Though medical training affords insight into the subjective effects of illness, it is axiomatic that objectivity is not similarly enhanced.

 

https://blogs.bmj.com/bmj/2020/07/1...longcovid-are-missing-from-the-nhs-narrative/

I’m not sure that’s a good definition of post viral.

 

I hope someone remembers that the important thing is to withhold a diagnosis so that the patient does not become too attached to it. If necessary NYD-N should do the trick.