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

I was told I would get better by my teacher who also got m.e. (one year before me) when I bumped into her 5 years later. She meant well but I was so sick at the time and it never happened for me. It's a lottery when it comes to recovery I'm afraid.

 

https://twitter.com/user/status/1325515300595507201

 

I haven't been following her posts recently, but this at least suggests she recognises the similarities and is willing to say this publicly.

 

Not sure I take it that way, and a number of other pwME haven't either. To me it comes across as trying to shut us up because the Long Covid folks are special because lots of them are getting chronically ill from the same thing all at the one time - whereas we just got ill, mostly, in dribs and drabs from a variety of causes.

 

https://twitter.com/user/status/1325571169844670465

 

Okay. But I was quite irritated by her earlier posts, so this seemed to me like progress.

I suppose I should add that in some ways, I don't mind if long Covid get special treatment, if it leads to lots of extra research that would not otherwise happen. I think that it could help us a lot in the long-term.

But if in a few years time, they are getting special clinical treatment that would irritate me more.

 

I noticed upon re-reading it that she doesn’t mention ME or CFS explicitly. If that is deliberate and she won’t explicitly mention similarities, that’s frustrating; it could however simply be due to the confines of the character limit on Twitter.

 

Sorry if I misunderstood what you meant by special clinical treatment, but they are already getting special clinical treatment. No need for me to paste all the news and other stories from Google, but long COVID specialist clinics are popping up in US and UK

 

Yes, I realise that. But my own view is special clinical treatment for them may change attitudes and structures for ME/CFS in the long-term and similarly special money for research now may lead to research progress that will help us. And also the extra clinical experience may help the research progress. I’m willing to put up with some short-term pain for hopefully some long-term gain.

But I do spend quite a bit of time on social media highlighting similarities which on occasion has annoyed the odd person with long Covid (and those with ME who reject comparisons) and so caused me a bit of angst.

 

Other than the lung problems and blood clotting all the other symptoms are what most everyone with ME/CFS has and under the official symptom lists for ME. Once they realize that many are getting PEM from exertion and there’s no otherwise obvious reason for them to (like COVID specific organ damage which many do not have), then it will hopefully start making sense to them.

If it looks like a duck, walks like a duck, and talks like a duck, it’s probably a duck.

 

Have We Been Thinking About Long-Haul Coronavirus All Wrong?
Time Magazine, October 16, 2020

Yes and by making it something special when it really isn’t over the long-term will just screw us, chronic Lyme, and Fibro communities with decades more of suffering and no effective treatment. It’s medically criminal.

 

It is upsetting me too. I never had fatigue at all for the first 6 years and even now I just suddenly stop. But there were weird neurological symptoms, no temperature regulation and lots of pain.

I had summer flu: being well one day, forced to stay in bed for the next few days then fifty four years of chronic ill health and disability.

I don't care about special treatment as such, it is the way that I have been told I have kept myself ill because of some mythical psychological gain and deconditioning when I was more active for the first forty years than many an office worker.

I don't feel I can bear it if long covid is acknowledged as a physical disease and we are left with FND

 

Agree, particularly in the autonomic disorders research department which is receiving more attention with post-infectious Covid.

 

https://www.youtube.com/watch?v=djtXmzicN6Q

He discusses long Covid. Nothing particularly useful from an ME/CFS point of view, I think:
"more have lingering symptoms well beyond what you'd expect post antiviral syndrome like influenza and others".
No mention of ME or CFS.

 

Most people who want to make a complicated argument on Twitter make a Thread. Confines on character limit is no excuse whatsoever.

 

Nothing useful, though. Not that I can see so far. It's all the usual, looking for other explanations but otherwise have nothing to offer but reassurance and misguided attempts at rehabilitation. They are getting more tests but most of those are negative, not much there.

Technically they are getting more "help", almost none of it is worth a damn. I think that's important to keep in mind, it may seem as if they are getting more but they aren't getting anything more than we have other than attention. Ironically it shows how worthless "attention" is by itself.

 

These are the kind of clinic I’ve been reading about popping up in the US

Long Island clinic to treat people with lingering health effects of COVID-19

 

And I’m sure all the doctors at these clinics accept most insurance! Unlike most ME specialists here in the US. How can post COVID syndrome doctors manage to accept and work with insurance yet most ME doctors cannot?? Hmmm... sounds like greed to me

 

That will be one of the major drivers for the wish to to differentiate the conditions.