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

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Andy said:
US: Coronavirus Patient And His Doctor Explain ‘Long-Haul’ Symptoms | TODAY
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Code: 
https://youtu.be/GTTx6nNMiuU?t=301
to jump to the section where the doctor mentions PEM and ME/CFS.
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Oh boy a bit off the woodworks but the casual mention without context of Epstein-Barr, especially today, will set off the Q nuts. It's complicated to explain and it's politics but ooooh boy this is like tossing fresh meat in a tiger pit.

I must say I had never imagined post-exertional malaise to be used properly in a regular way at any time. Good segment.
 
I'm wondering, why hasn't the WHO said anything about "long haulers" yet? Or the CDCs?

So far, it's a tiny handful of researchers and the media covering it.

Yesterday, a politician (himself being an epidemiologist, very outspoken about Covid) warned about long term neurological effects on a German talkshow mentioning Post Sars1 Syndrome and "chronic fatigue" (not ME though). So this is being noticed..
 
Leila said:
I'm wondering, why hasn't the WHO said anything about "long haulers" yet? Or the CDCs?

So far, it's a tiny handful of researchers and the media covering it.

Yesterday, a politician (himself being an epidemiologist, very outspoken about Covid) warned about long term neurological effects on a German talkshow mentioning Post Sars1 Syndrome and "chronic fatigue" (not ME though). So this is being noticed..
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The WHO acknowledged it a few times, not very loudly. Just mentioned in a few press conferences, not particularly important. The CDC are generally useless here, complete shambles.

It's difficult for institutions to acknowledge this while simultaneously denying ME, given the controversy. With no denial we would have been ready for this. With denial not only are we not ready for this but also have to dance around decades of denial before we can do anything, mostly because there will be no way to distinguish COVID-19 patients from others.
 
NelliePledge said:
Hopefully Carol Monaghan and ForwardME charities have picked up on this and are contacting him. @Action for M.E. @Russell Fleming
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My very foggy mind tells me there's another MP as well? Can't remember clearly. But definitely and especially relevant to the APPG. Work has basically started and is ready to get into gear at any time once the funds and resources are provided and the quackery is pushed aside.

Otherwise Gwynne is about to be sorely disappointed about what the NHS has planned for him and other post-COVID patients. Although maybe that could provide a wake-up call, medical gaslighting is hard to believe until you experience it. A real eye-opener.
 
rvallee said:
Which seems to be assumed to be some sort of PTSD. Based on nothing at all, of course.
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Based on nothing at all? You ask people who've spent a considerable amount of time in ICU (I know two recent cases) and they'll probably tell you that it was pretty hellish, especially if they had to be intubated, and that they're suffering from some form of PTSD.
 
rvallee said:
Otherwise Gwynne is about to be sorely disappointed about what the NHS has planned for him and other post-COVID patients. Although maybe that could provide a wake-up call, medical gaslighting is hard to believe until you experience it. A real eye-opener.
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Perhaps they should try lobbying the Prime Minister. Looking at him one suspects that there is something we are not being told. There is a familiar look to him.
 
rvallee said:
My very foggy mind tells me there's another MP as well? Can't remember clearly. But definitely and especially relevant to the APPG. Work has basically started and is ready to get into gear at any time once the funds and resources are provided and the quackery is pushed aside.

Otherwise Gwynne is about to be sorely disappointed about what the NHS has planned for him and other post-COVID patients. Although maybe that could provide a wake-up call, medical gaslighting is hard to believe until you experience it. A real eye-opener.
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I don't know if you mean Olivia Blake MP who's on the APPG? She's had personal experience of ME and was interviewed by the Sheffield ME group as part of their 'Millions Missing' event - see: https://www.s4me.info/threads/me-awareness-day-week-month-and-millionsmissing-may-2020.15083/

Perhaps the Sheffield ME group could ask her to contact Gwynne @Gecko?
 
Three Months In, These Patients Are Still Ravaged by Covid’s Fallout
Doctors are studying coronavirus patients who are still experiencing symptoms or aftereffects of the disease, months after infection

A good article and I like they include pictures of patients, it makes them less anynomous.

They mention ME and dysautonomia but also a guided exercise programme, that made me cringe.

"Akiko Iwasaki, professor of immunobiology at Yale, believes there are three potential explanations for long-term symptoms:

Patients have a dormant reservoir of virus in the body that periodically gets reactivated; traces of the virus in tissues are triggering inflammatory symptoms; or the immune response goes into overdrive and mistakenly starts attacking the body’s own cells."
 
Wits_End said:
Based on nothing at all? You ask people who've spent a considerable amount of time in ICU (I know two recent cases) and they'll probably tell you that it was pretty hellish, especially if they had to be intubated, and that they're suffering from some form of PTSD.
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The problem is that in the article, it reads as if all the symptoms are assumed to be either PTSD or psychological in nature, or physical symptoms that can & should be rehabilitated. It even says in the article “lying in bed all day makes it worse”. But we know from viral infections in general, this is not the reality.
 
chrisb said:
Perhaps they should try lobbying the Prime Minister. Looking at him one suspects that there is something we are not being told. There is a familiar look to him.
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What do you mean? Btw I stopped watching tv for these matters & only read articles. Does he no longer come out for conferences & appearances? He does come out for PMQs though from what I read.
 
Merged thread

BBC article on severe coronavirus does not mention possible M.E.

This article posted today cites "an infectious diseases doctor at the Royal Free Hospital" with serious after-effects of coronavirus which bear resemblance to M.E., but does not mention the possibility that she may have it or be in danger of getting it, and she doesn't refer to M.E. either:

https://www.bbc.co.uk/news/53193835

The item is near the end and is headed "I'd crash in a heap". Alarmingly it includes strikingly similar text to that of many people here in the early days before they knew what they had:

"Every 10 days or so I'd start to feel a little better and I'd start to go for longer walks," she says. "But then I'd crash in a heap and couldn't get out of bed for a week."

It was a month after falling ill that she first managed to walk to the end of the road and back. A keen cyclist, her next goal is to cycle around the block.
 
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I saw that. Whilst it's too early to know whether some patients will develop ME, I do wish people were warning them of the possibility and advocating rest and pacing. It wouldn't do them any harm, and it might save them a lot of misery.

MeSci said:
It was a month after falling ill that she first managed to walk to the end of the road and back. A keen cyclist, her next goal is to cycle around the block.
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This.

This is what annoys me so much about the BPS crap. Everybody who's ever had ME – or any kind of post-viral syndrome, for that matter – does this. Even those whose illness was severe from the outset will have set little targets for sitting up, or talking to their partner, or brushing their hair. It's what humans do. Psychologists ought to know this.
 
One might reasonably expect an infectious disease specialist at the Royal Free to be aware of the risks, so it is not clear whether it is she or the reporter who sidestepped the issue. Although it seems there were always doubters at the Royal Free... PK Thomas... I'll leave it to you to include more recent examples, should you wish to do so.
 
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