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

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Dolphin said:
I haven't been following her posts recently, but this at least suggests she recognises the similarities and is willing to say this publicly.
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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.
 
Andy said:
I haven't been following her posts recently, but this at least suggests she recognises the similarities and is willing to say this publicly.
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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.
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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.
 
Dolphin said:
But if in a few years time, they are getting special clinical treatment that would irritate me more.
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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
 
leokitten said:
But if in a few years time, they are getting special clinical treatment that would irritate me more.
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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
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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.
 
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Dolphin said:
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.
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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.
 
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Have We Been Thinking About Long-Haul Coronavirus All Wrong?
Time Magazine, October 16, 2020

Tompkins adds that any progress for ME/CFS patients will hinge on doctors definitively determining that coronavirus can turn into ME/CFS, rather than making post-coronavirus syndrome a separate diagnosis. “It would be a disservice to make post-COVID something special,” he says, because ME/CFS patients wouldn’t share the benefits. “I don’t think there’s a nickel of difference between the two,” he adds.
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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.
 
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JemPD said:
It doing my head in, there is a very wide ranging symptoms PwME are experiencing & its misinformation & ignorance and that _ _ _ _ _ _ _ stupid CFS name that makes any of them even dream that ME =fatigue, so if you dont have fatigue you cant have ME

:banghead::banghead::banghead::banghead::banghead::banghead:

My head is going to explode over all this. I dont know how you can keep following it @rvallee & others you're all ruddy heros.

edited for sense
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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
 


Join Anthony Fauci, MD, director of the National Institutes of Allergy and Infectious Disease, and James Madara, MD, American Medical Association CEO and EVP, as they explore the impact of COVID-19 and what lies ahead for physicians and medical students. For more American Medical Association events and other AMA members-only benefits, join the AMA: ama-assn.org/join.
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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.



so the the sections that are meeting now
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uh are part of our house of delegates
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180 medical societies
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all state and specialty branches of
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military medicine
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and the leadership of those societies
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are part of
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the recipients of this knowledge
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and in medicine as you know in the last
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half century we've moved from
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episodic to more chronic disease
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and now with kovid we find these
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very odd odd
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symptoms and effects in a longer period
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of time
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so how should physicians be thinking
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about that you know on one hand
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do we have to prepare for yet another
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source of chronic disease
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or are these side effects uncommon and
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how do we in our practices when we see
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patients with a history of covid
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that seemingly have recovered how do we
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think about
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odd things that seem to manifest
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themselves
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that just strike you as maybe not usual
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for this particular patient
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well you're you're hitting on something
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that
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is a work in progress and that it's
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evolving
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we do know for absolutely certain
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that there is a post covet 19 syndrome
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referred to sometimes as long covered
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chronic covid long haulers it's got
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different names
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i think we better get an appropriate
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medically reasonable
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name for them soon and what it is is
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that
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variable percentages and we're studying
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a number of cohorts now
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that the nih is funding and in fact we
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have a
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program right here here in bethesda
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in which we're looking at a large cohort
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of post
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covered survivors and we're seeing
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variable percentages in anywhere from 25
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to 35
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or more have lingering symptoms well
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beyond what you'd expect
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post antiviral syndrome like influenza
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and others
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it's fatigue shortness of breath
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muscle aches dysautonomia sleep
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disturbances
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and what people refer to as brain fog
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which is a non-medical way of describing
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a lack of ability to concentrate
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or to focus so there's no doubt that
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that is going on that can last
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anywhere from weeks to months and it
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might even be longer and the reason we
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don't know it's longer because we've
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only been involved with the syndrome
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for about 10 months right now so it
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could be
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even longer than that the other thing
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we're seeing that's really quite curious
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and somewhat disturbing
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is that there have been a number of
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studies of people
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who have recovered virologically from
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either moderate degree disease
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or maybe severe disease which required
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hospitalization you didn't have to be
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hospitalized to get this
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but when a bunch of cardiologists did
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mri scans of the heart they found that
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even an asymptomatic people
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about 60 percent of them had indication
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of inflammation in the heart now that
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could be
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of no ultimate clinical consequence
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which would be fine
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or it could down the pike
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lead to things like premature
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atherosclerotic cardiovascular disease
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unexplained arrhythmias cardiomyopathies
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we don't know what it's going to mean
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hopefully it won't meet much
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but the findings there are real and
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that's one of the things we really want
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to keep an eye on
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Dolphin said:
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.
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Most people who want to make a complicated argument on Twitter make a Thread. Confines on character limit is no excuse whatsoever.
 
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leokitten said:
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
Click to expand...
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.
 
rvallee said:
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.
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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
 
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