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

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rvallee said:
Some of the BPS angry rants about us are about the fact that we always opposed this [advice to exercise or ignore symptoms] because we irrationally rejected a psychological explanation. Rather this [post-Covid response to this advice] is showing plainly and clearly that it is clearly aligned with the lived experience, learned quickly early on but here vastly facilitated by the fact that the COVID community is able to connect in large numbers, something we never could do.

Which puts into perspective all the objections from the early days. They were clearly rational. It makes the patients worse, simply, plainly. It was explained and documented also very plainly and clearly. Reaffirmed constantly for the decades that followed. To even ask the questions of whether exercise or ignoring symptoms was always an absurd starting point, always an invalid proposition.
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It starting to look like calling ME/CFS "A Canary In A Coal Mine" was sadly even more prophetic than could have been imagined.
 
I wonder, though, whether the unfortunate possibility of a rash of new cases developing among respected medical professionals will actually benefit the ME cause in the medium term?

The difficulty for existing 'reliable witnesses' within the medical profession (putting aside the politics of why a serious illness should even need reliable witnesses) is that having ME grinds them down. Few can carry on working full-time, and if they lose touch with roles, institutions, conferences, and publications, they fade rapidly from view. They may join the group of Poor Old Whatsisnames; the former colleagues with promising careers, who succumbed to anything from mental breakdown or alcoholism to premature death.

However, if a group of doctors, academics and researchers is affected within a few months, the collective impact of their voices is amplified enormously. They're unlikely to be silenced and ignored, and some of them will find their way to our community. We need to be ready not only to support those who do arrive in our spaces as scared, struggling individuals, but also to leverage their influence.
 
What happens in 3 months time? "Oh you've been under/ overactive ( RCGP advice), now you need GET."

Backed up with media articles by Sharp.

Surely NICE needs to make a clear statement on GET?

Also becoming anxious/ depressed is a NORMAL reaction to a massive life change.
 
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rvallee said:
I'm beginning to see more and more accounts of people who thought they had recovered, had a few good days where they thought they were done with, and relapsed. I saw several over the weeks but they are becoming more common. It would be incredibly useful to be able to follow closely, have constant monitoring and testing during the entire phase to see those patterns.

So much fluctuation. Some straight up remain ill. Others have what seems like a recovery only to relapse. I see a lot of talk of waves of symptoms, not necessarily brought about by any exertion but others who find clear exertion triggers.

And so many had a very mild illness, sometimes literally just a mild cough. So much for the whole PTSD "traumatized by a neat-death experience". All the tropes are being dismantled thoroughly. Decades wasted on this nonsense.

Just one example but I'm seeing lots of that:

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Is it worthwhile providing post COVID cohort with links to virtual conferences past and present ?
 
For the past three months, the Artificial Intelligence technologist has been cared for at home by partner Ben.

She said: “I’m bed-bound. I can’t walk more than a few paces without feeling unwell. Standing up causes breathlessness, tachycardia and sometimes dizziness. I have constant fatigue and don’t even have energy to wash my hair.”
...
“It’s as if as soon as you are labelled as having post-viral fatigue it’s a dustbin diagnosis.

“We need research into Covid-19 longevity and the longer-lasting symptoms, so GPs are better equipped to support us.”
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https://www.edinburghnews.scotsman....-three-months-after-covid-19-collapse-2884714
 
The naivete shown in the assumption that GPs would like to support 'us' - when 30 years of evidence strongly suggests that they have absolutely no interest in doing so, in any way, medically or otherwise, is 'delightful' in it's lack of appreciation of the scope of the problem..
 
Many people with prolonged symptoms complain of profound exhaustion. This can have work-related ramifications, according to some medical experts.

“This post-infectious, long-term fatigue is similar to myalgic encephalomyelitis or chronic fatigue syndrome,” describes Divya Bappanad, MD, a pulmonary and critical care physician at PeaceHealth Medical Group in Washington state. She underscores the magnitude of the problem: “With the sheer number of people we expect will ultimately be infected with coronavirus, we may be seeing a whole new group of people unable to return to the workforce, with a chronic disability unrelated to their lung function.”
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https://www.forbes.com/sites/lipiro...ction-the-prolonged-onslaught-of-coronavirus/
 
Mij said:
There are several pro tennis players who have never regained their athletic abilities after contracting EBV.
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Taking the thread further off topic, I can recall two:
From Wikipedia
On 23 December 2015, Söderling announced his retirement from professional tennis, after over four years of not playing a single ATP level match due to mononucleosis.
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On 21 February 2011, Ančić announced his retirement from professional tennis due to recurring mononucleosis.
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From what I have read, the ones who don't recover have tended to push themselves to go on training and playing before they are fully recovered. I can remember others who have taken a year or more off and come back to full playing fitness.
The same thing of trying to push through happens with a lot of people with ME, and is likely to happen with Covid patients too.
 
Kitty said:
I wonder, though, whether the unfortunate possibility of a rash of new cases developing among respected medical professionals will actually benefit the ME cause in the medium term?
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The pleas for help from physicians have begun:



Well, Gardner was the first to speak out about it but this is more of a cry for help than relating the experience.

Not surprising: the demands are the same. How odd.
 
Not Just An Acute Infection: The Prolonged Onslaught Of Coronavirus

https://www.forbes.com/sites/lipiroy/2020/06/19/not-just-an-acute-infection-the-prolonged-onslaught-of-coronavirus/
Time and time again, this novel coronavirus has shown us that it does not cause your garden-variety respiratory infection. Over the past several months, we’ve learned that SARS-CoV-2 has been associated with strokes, myocarditis, leg clots, pediatric inflammatory syndromes and much more. But we’re also uncovering that, unlike most respiratory illnesses, Covid-19 can keep people sick for a long time. Several case reports describe patients experiencing waves of symptoms for well over 60 days.
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Many people with prolonged symptoms complain of profound exhaustion. This can have work-related ramifications, according to some medical experts.

“This post-infectious, long-term fatigue is similar to myalgic encephalomyelitis or chronic fatigue syndrome,” describes Divya Bappanad, MD, a pulmonary and critical care physician at PeaceHealth Medical Group in Washington state. She underscores the magnitude of the problem: “With the sheer number of people we expect will ultimately be infected with coronavirus, we may be seeing a whole new group of people unable to return to the workforce, with a chronic disability unrelated to their lung function.”

Because this is a novel virus, we simply do not have data on long-term sequela from Covid-19 infection.

“There is unfortunately much unknown about the varying effects of Covid-19 and its trajectory,” reflects Dr. Mantravadi. “Some form of an ongoing inflammatory response is lingering in certain patients whose symptoms never warranted hospitalization but are having a long road to recovery.”
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I don't remember seeing this one posted yet, probably because of the paywall but signing in allows me to read it. Guy was a picture of healthy fitness. It's pretty good. COVID-19 is like a gattling gun firing wrenches into the MUS/FND machine. Holy crap are these people unmatched for the scope of what's happening.

The comments are especially interesting. Many good ones. Some terrible ones. One especially weird basically dismissing everything on the basis of the Royal Free outbreak and how it proved it's mass hysteria because women. Someone is actually making that argument seriously. Impressive.

‘I had the coronavirus months ago but I’m still too ill to work... or even watch TV’

https://www.thetimes.co.uk/past-six...ll-too-ill-to-work-or-even-watch-tv-d6cc3vgtb
When Dan Scoble came down with the coronavirus in March, all the classic symptoms landed in one fell swoop. “I had everything under the sun: a fever, temperature, fatigue and chest pain,” he said. “My head felt like a balloon.”

The 22-year-old, a personal trainer from Oxford who normally breezed through 10-mile runs, suddenly found himself bed-bound. He presumed it would soon blow over, but 12 weeks after falling ill as the country went into lockdown, he is still not back to normal.

Scoble has left his house just five times in three months — twice to see his GP and three times to hospital. He still suffers from crippling fatigue, recurrent migraines and a persistent sore throat, as well as abdominal and musculoskeletal pain.

“My life has been stripped,” he said. “I have no power, no control, and I don’t know when I will recover.”
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“I do not think any of us have thought it to be solely a respiratory disease for some time,” said Professor Paul Hunter, of the University of East Anglia, who specialises in outbreak response and emerging infectious diseases. “Otherwise, why would such a high proportion of patients on ITUs [intensive care units] require renal dialysis? Some people will have damage to their lungs or other organs from which they will not fully recover even after the virus has gone. It is also likely that some will go on to develop a chronic fatigue syndrome.”
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“It never ends,” said Karly Kissling, a 45-year-old yoga teacher from Penzance, whose symptoms have persisted since the start of April, when she was struck down by the virus after a day of cycling and yoga.

She woke up in the night and panicked: “I’m calling it partial paralysis, because I literally couldn’t move. It felt like someone had put a bunch of sandbags in every muscle. I said to my husband: ‘My body feels as if it has been swallowed up by the bed.’”

NHS 111 advised her that she had Covid-19 and should rest and self-isolate. The mother of two developed shortness of breath, a tight chest and fever for about a week. But the illness has still not left her. Over the past 10 weeks she has suffered from chronic fatigue, liver pain, a swollen throat and even stinging in her eyes and tongue. “I haven’t been able to drive, go shopping, walk the dog,” she said. “It’s really alarming.”
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Has the yoga teacher tried yoga to cure her unhelpful beliefs? Yogis are known for their pessimistic outlook on life.
Many patients recovering from Covid-19 could suffer significant long-term effects, according to a study published last week by researchers at the universities of Leeds, Manchester and Hull, who examined the experiences of people treated in hospital during previous outbreaks of coronavirus diseases, such as Sars and Mers.

Quality of life for one-third of survivors was impaired — even as long as a year after some first fell ill.
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Some say the experience of the long-suffering, if not critically ill, deserves more urgent attention. “Answers need to be found,” said Scoble, who still finds reading or watching television too demanding.

Kissling said: “For me the alarming part is not knowing where the end is and when the damage stops. I was in bed last weekend, functioning at about 20%. It was really scary again.You’re always feeling like you’re on the edge.”
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Me, too. I empathize, 3 months is a lot for an otherwise healthy person. It's nothing for the chronically ill.

I still think most of them will resolve though. It's known from othet viruses, e.g. EBV, that post viral fatigue can last for up to 6 months or so.
 
Thought this N=1 experiment was interesting. Anecdote of course but consistent and interesting comments below. Includes at least one comment from someone saying they felt back to normal for about a month and relapsed.

What I'm seeing is that there seems to be a threshold past which a return to normal is achieved. Until that point there may be improvement but too much exertion before that point leads to a tightening of whatever is causing the illness.

 
I'm trying to get a picture of the various post-X syndromes and can't find a source that made the effort to list them or research commonalities, differences, features. There are basically a dozen or so post-infectious syndromes, somehow all unrelated and having nothing to do with one another in such a way that it's apparently preposterous to suggest there is such a thing a post-infectious illness.

From https://me-pedia.org/wiki/Postviral_fatigue_syndrome#Viruses I get:
I guess that's one to add to the list. I can't see a reason not to add the Lyme and Q fever as well. It's so damn obvious it's incredible that Occam's razor was dismissed so thoroughly for years in favor of Rube Goldberg's blunt mace of bluntness, the equivalent of "ghosts, I guess, why do you even want a label anyway?"

And seeing so many accounts of "I've had post-viral fatigue and this is something way more severe" leads me to think the entire CFS-ME debate is largely (there can still be various other causes leading to the same) a matter of spectrum, perhaps not triggering the mechanism that causes PEM, the distinguishing feature that should mean "rest or you are in for a world of hurt".
 
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