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

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strategist said:
Sudden severe chronic illness, disability is a shock. In response, a person may cling to unrealistic hopes. I know I did.
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Bit ironic with the trope over how the certain anguish that we will never get better is reinforcing the... whatever it is supposed to be doing. I never once thought that. The shock takes years to take hold, frankly, the realization that help simply isn't on the way. The hope is always there, crushed every time but still holding on. Took me nearly 10 years to really accept that this is all there is and that this failure is a conscious choice that people will fight to preserve at all costs.

I expected long haulers to be sort of outraged at the pathetic attempts with CBT/GET but forgot how long it takes people to get the hint of how truly dysfunctional medicine is when facing complex problems. It really takes being hurt by it to believe it. Then of course that frustration turns into anger and tone policing goes a long way silencing people who have every right to be outraged.

But of course by then the % of those still affected is so much lower that it's easy to point at the huge % who did recover as the "norm". Complex problems suck, nobody gets them at first and simple but wrong solutions always occupy the space for a while.
 
Jonathan Edwards said:
If I remember rightly Dr Chew Graham claimed that 10% of all NHS expenditure has always gone on Medically Unexplained Scovids. She really ought to have got those other centres sorted by now, being a professor and all that.
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I think it was medically unexplained symptoms, not medically unexplained covids! but yeah, she misquoted the number by more than tripling it--it was 3% of all NHS expenditures--if you even believe how the study did the calculations, which was questionable.
 
rvallee said:
It will be so annoying to have people say LC is more than just fatigue, it's actual exhaustion, and therefore more serious than ME, which is obviously just fatigue. Ugh. Guaranteed this will play for a bit.

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made me think of Gulliver’s Travels where the little people on the island who crack the pointier end of the boiled egg before they eat it think they are completely different to the little people who crack the rounder end first
 
An NHS spokesperson said: “Long Covid is still a new condition, but dozens of NHS clinics across the country are rising to the challenge of understanding and treating it, bringing together expert clinicians to provide comprehensive assessments for thousands of patients, with more set to open over the coming months.
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That's laughable.

I recall seeing a tweet from a woman with long-covid who, after waiting months for her appointment at a specialist LC clinic, was told that her symptoms were all due to "anxiety and depression" and was then promptly discharged.

If that's standard practice, the NHS should be able to churn through the backlog of these pesky patients within a couple of months.
 
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Art Vandelay said:
That's laughable.

I recall seeing a tweet from a woman with long-covid who, after waiting months for her appointment at a specialist LC clinic, was told that her symptoms were all due to "anxiety and depression" and was then promptly discharged.

If that's standard practice, the NHS should be able to churn through the backlog of these pesky patients within a couple of months.
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That's why these clinics are genuinely excellent. That woman was sorted so quickly. And she never came back, so she's obviously delighted with the results!
 
Jonathan Edwards said:
It seems to me that the Long-Covid campfire is getting to the stage where only Dr Pope and Dr Chew Graham can be bothered to sit around the dying embers in the drizzle.
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I don't think they are singing Kumbaya anymore.

NelliePledge said:
made me think of Gulliver’s Travels where the little people on the island who crack the pointier end of the boiled egg before they eat it think they are completely different to the little people who crack the rounder end first
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or the joke about someone going up to heaven and seeing a large wall and asking 'who's behind that'? to be told
'oh that's the [religious group], they think they're the only ones up here'.
 
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Art Vandelay said:
That's laughable.

I recall seeing a tweet from a woman with long-covid who, after waiting months for her appointment at a specialist LC clinic, was told that her symptoms were all due to "anxiety and depression" and was then promptly discharged.

If that's standard practice, the NHS should be able to churn through the backlog of these pesky patients within a couple of months.
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Saw the same from a German patient that's bedbound.

Made me think of old Western movies where everything (the Saloon, the town hall etc.) are just a 2D coulisse/movie set. Nice from the front but nothing behind it.
 
Patient perspective: Young person with long COVID after mild disease
Shannon (name has been changed) is a nurse in her 20s who works at a busy hospital in Dublin, Ireland. When the COVID-19 pandemic struck in March, 2020, Ireland was one of the countries that went into a relatively early lockdown. But still, the patients began to mount. At work, Shannon was told her ward would be made a COVID ward and she was scared. “It was so much to take in. We basically learned as we went along. All the policy changes, the changes to personal protective equipment (PPE). And all this combined with the constant worry we ourselves could be infected and take the virus home to our families”, she explains.

Nothing could really prepare Shannon or her colleagues for what followed in late March and into April. “The ward became like a war zone. All the doctors and nurses were scared. We just didn't know what we were dealing with, or how to treat these patients. It seemed like on every shift, we'd have to move one or more patients to the intensive care unit (ICU), and also at least one would die”, she explains. “We were dealing with the stress and grief of the families. Normally when a patient dies, their family is there with them. As this can't happen during the pandemic, we had to ring their families. It was heart-breaking every time.”
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https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(21)00123-5/fulltext
 
The Lancet: Long-haul COVID: heed the lessons from other infection-triggered illnesses by John N Aucott and Alison W Rebman

Although the frequency, severity, and potentially the etiology of persistent symptoms can vary, sequelae after COVID-19 appears poised to join the range of other postinfectious syndromes described in the field of infectious diseases.
2 These often share a common symptom phenotype, which might also meet case definitions for myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, or post-treatment Lyme disease. We hope that researchers and clinicians will draw on these other conditions as they continue to advance scientific understanding of so-called long-haul or persistent COVID-19.
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ETA: Both authors are from:
The Lyme Disease Research Center, Division of Rheumatology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore
 
ME/CFS is what we have when the symptoms go on for years and years without resolving which is exactly what she is saying longcovid is.

Exactly the way we have known for years that some people have an extended recovery from an infection but then return to normal whereas others stay sick.
 
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