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

Without addressing the decades of lies overt discrimination, and plain failure, creating a state of hostility to this entire category of disease, this will be a serious problem, it could even derail efforts right at the start, fueling even more denial of the "we don't really see those patients much anymore". Yeah, no shit.

https://twitter.com/user/status/1463914939526135812

 

the tweet in your post seems to no longer exist.

 

Hmm... bummer.

It was from a GP running a Long Covid clinic (at Johns Hopkins, I think) saying they are having problems finding physicians to work there because LC simply isn't taken seriously enough, hardly anyone's interested.

The first of 2 is still there... But I just noticed this was from the author of a recent article that more or less argued that the biopsychosocial model is the solution to the problem created by... the biopsychosocial model (though clearly not aware that it is the problem). So I don't know. So many good intentions, so little of those intentions have anything to do with the actual problem.

https://twitter.com/user/status/1463912705299988490

 

"Is Long Covid a new type of chronic fatigue syndrome?"

Quite a long, in-depth article in the NZ general media. Bats Wessely aside early on in the piece.

https://www.rnz.co.nz/news/what-you...-covid-a-new-type-of-chronic-fatigue-syndrome

 

merged thread

I'm not sure if the was posted.

https://www.nzherald.co.nz/world/is...5N5W7IK5E/?c_id=204&objectid=12489127&ref=rss

 

For once it's good to see SW get a mention.

 

I don't know if this has already been posted but looking back I can't see it. I just came across it and on the bbc news website. It's a video interview with a young professional footballer who has long covid. Very sad. https://www.bbc.co.uk/news/av/uk-england-london-59039726

 

I really don't like where this is going. This is basically the nightmare scenario disguised as a blessing, because 99.9% of health care services would not see it as a problem: a variant that is highly contagious, causes less acute illness of the "needs hospitalization" kind, but is even worse at creating chronic illness. Basically like a meeting of all medicine's blind spots all at once. Hopefully not, but the dismissiveness displayed here borders on callous. I get that they are saying that purely in terms of how ICUs get swamped, but that's not health care, that's just myopic and foolish. The health of a society is not defined by how many people are currently in need of urgent care.

Because the only worse thing than the largest mass disabling event in human history is one that is somehow, at the time, seen as a success to the point of encouraging herd immunity, because that very hot stove will have to be touched many times until people even hesitate. Seeing how things unfolded in the last 2 years, it's clear that whether it happens is purely down to chance, the decisions made if it happens are basically guaranteed to be the worst they possibly could.


South African doctor who raised alarm about omicron variant says symptoms are ‘unusual but mild’
https://www.telegraph.co.uk/global-...r-raised-alarm-omicron-variant-says-symptoms/

They included young people of different backgrounds and ethnicities with intense fatigue and a six-year-old child with a very high pulse rate, she said. None suffered from a loss of taste or smell.

“Their symptoms were so different and so mild from those I had treated before,” said Dr Coetzee, a GP for 33 years who chairs the South African Medical Association alongside running her practice.

On November 18, when four family members all tested positive for Covid-19 with complete exhaustion, she informed the country’s vaccine advisory committee.

She said, in total, about two dozen of her patients have tested positive for Covid-19 with symptoms of the new variant. They were mostly healthy men who turned up “feeling so tired”. About half of them were unvaccinated.​

 

Implying that about half had been vaccinated.

 

I also read this and worry that "mild" might equate to "presenting with long COVID".

Of course we have no idea what the recovery rate is as it's too early to have data, but I hope authorities recognise that this strain might possibly be less about the acute severe/high mortality in those with certain pre-existing conditions and more about the chronic/severely disabling in the otherwise healthy.

But as @rvallee notes, that hope is unlikely to be adequately considered.

 

I don't think this has been shared yet. It was published four days ago.

Wired To Help People With Long Covid, Scientists Need to Define It

quotes:
There is a long history of new diseases being brought to medical attention by patients—often by women, who between monthly menstruation and routine GYN visits tend to be more in tune with their bodies than men are—and then dismissed by medicine as imagined. Lyme disease is one such example; myalgic encephalomyelitis/chronic fatigue syndrome, another. Researchers are determined that long Covid not go down that road.

“As a physician, but also as a woman, I have seen so many of these poorly defined syndromes get dismissed, and seen patients have no alternative other than quackery, when there really is a pathophysiologic basis for their symptoms,” says Megan Ranney, a physician and associate dean at the Brown School of Public Health and co-director of a new long Covid initiative there.

...

One challenge of defining long Covid is persuading patients that trauma may be playing a role in their symptoms—without appearing to tell them that it is all in their heads. Researchers are at pains to affirm to patients that while they are authentically ill, the cause of their illness may not be what they believe it to be.

This is hard. Diagnoses are validating; they put a frame of meaning around the chaos of illness. A diagnosis of long Covid in particular might give someone bewildered by strange symptoms a sense of purpose, a chance to identify with the patients’ collaboratives who are sharing information and reassurance as a means of turning their suffering to good. Scientists wrestling with definitions for the syndrome worry about taking that emotional support away. “The entire conversation about whether or not long Covid is real is predicated on this assumption that something physiologic is real, and something psychiatric is not real,” says Daniela J. Lamas, a critical care physician and assistant professor at Harvard Medical School who co-directs the Covid Recovery Center at Brigham & Women’s Hospital. “And that's not accurate. There's a tremendous amount of suffering in these patients.”

Scientists need to narrow the definition of long Covid in order to be able to research it—and conflating the physical impact of the virus with the after-effects of trauma could slow the search for remedies. But at the same time, acknowledging that some portion of the syndrome may arise not from a single infection but from shared grief could allow us to reframe, and name, the greater harms the pandemic has wrought.

 

The title suggests "helping" people with Long Covid. How is pseudoscientific nonsense like this helping?

 

I understand and share your frustration. But there's also a point being made, if Long Covid is being confused with the collective challenges of the pandemic that we all feel in a more or less degree.

I see a lot more use of the word "fatigue" now in Norwegian media, which until now has been rarely used except for in articles about ME or cancer. Now it seems we are all suffering from fatigue as in pandemic fatigue, restriction fatigue and so on.

I recently read an article from a psychologist about burnout, where she warned against exercising beyond ones limits. I suspect she's read something about fatigue, exercise and ME and assumed it was all about burnout.

I fear Long Covid, ME, burnout, increased stress due to the pandemic, have become a big messy ball which will be almost impossible to untangle again for clinicians.

 

One popular doctor on twitter who has LC tweeted that doctors need to go back to taking proper histories after I wrote that we need a biomarker to understand the pathophysiology of PEM.

After having ME for 30 years, I can guarantee that a general GP won't understand PEM by taking a 'history'. I've never mentioned PEM to my GP of 37 years.

 

They really need to talk with patients. Not to. With. This is awful. Complete caricature of what it's like to be ill.

Diagnoses are "validating" because they are the ticket to everything happening in health care. It's not an abstract, it's a requirement without which nothing happens. That medical professionals don't get this is absurd. Gatekeepers completely unaware of what's behind the gates, or that their gatekeeping is absolute.

They seem utterly unaware that without health, the basic necessities of life go away very quickly. Not "life fulfillment", basic stuff like food, shelter and security are all completely dependent on the "validated ticket". Incredible that they can't get any of this.

 

Long-Covid patients ‘gaslighted’: Founder of support group calls for clearer guidance for medics and the public


https://www.independent.ie/irish-news/news/long-covid-patients-gaslighted-41096001.html

Some extracts:
---
She said research on other post-viral illnesses indicates it could take around two years to fully recover from long-Covid. Patients suffer from a range of symptoms, from lung problems and serious breathing difficulties to an inability to walk even short distances due to chronic fatigue.
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“Chronic fatigue is a major issue, but many people, including a lot of employers, do not understand. The stigma is not that we’re sick, it’s that we’re being called lunatics. Not understanding long-Covid is re-stigmatising us.”
---
“We know what we need: time for our bodies to heal,” Ms Twomey said. “We need to be listened to and heard because this can’t continue. Long-Covid is not going to go away because Covid is not going away. We are the experts by experience, but we are being gaslighted.

“We understand medics can’t make it go away, there is no magic bullet. What we want is to be acknowledged.”
---
Ms Twomey got Covid in March last year at the outset of the pandemic. She said she is “95pc better” but still is not fully recovered.

“I feel lucky now. I don’t have to go to bed in the day any more from sheer exhaustion. But at one stage I couldn’t climb the stairs without getting breathless and I had a lot of neurological pain and a shingles-type rash. Fatigue was the biggest problem.

 

Yes. Just like ME has been conflated with non-ME fatigue, they are going to conflate long COVID with "lockdown burnout" or whatever you want to call it.

 

just in reference to the earlier article

I don’t see the problem - give them the physical diagnosis that WHO has defined. This gives them validation and a sense of control and they follow the recommended treatment and then leave it.

If the pwLC want help with mood, anxiety or PTSD from their experiences, ask if they want this to be assessed by a qualified professional and then offer evidenced based treatment. You can have both, they are just over complicating and psychologising the illness.

Making up some new psychological syndrome or psychiatric label with no validity is a not good medicine…Just something to stigmatise the person with.