Long Covid in the media and social media 2023

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The Pandemic after the Pandemic: Long covid haunts millions of people—Washington Post Editorial

https://wapo.st/3RLcbjDI’m

“It’s time for all hands to be engaged. The National Institutes of Health should take leadership by appointing a senior official to drive the science about long covid forward, across all fields. The nation and the world should not hesitate to prepare for what is shaping up to be the pandemic after the pandemic.”
 
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Jaybee00 said:
Merged thread

The Pandemic after the Pandemic: Long covid haunts millions of people—Washington Post Editorial

https://wapo.st/3RLcbjDI’m

“It’s time for all hands to be engaged. The National Institutes of Health should take leadership by appointing a senior official to drive the science about long covid forward, across all fields. The nation and the world should not hesitate to prepare for what is shaping up to be the pandemic after the pandemic.”
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I am really glad this is getting a WaPo editorial. But reading stuff like this really makes we wonder what people think "the pandemic" was if this wasn't part of it? This is the pandemic, not a separate pandemic "after" or separate from the main event, which is still ongoing.
 
BMJ: As a doctor with long covid, I feel abandoned by the NHS

quote:
One key feature of everyone I know with long covid is that we “pushed through” the initial stages of our illness, believing that we could get better by carrying on and ignoring our bodies. As a doctor, the system I worked in and the martyr complex instilled by medical culture enabled that view. In medicine, being ill, being human, and looking after ourselves is still too often seen as a kind of failure or weakness.

Being a doctor was how I defined my life, but eventually I was unable to carry on working. Now I’m in constant pain. I struggle to sit, walk, or play with my children. Like thousands of other people, I face the stark reality of being left behind—thrown away because I am now disabled.

https://www.bmj.com/content/380/bmj.p337
 
Kalliope said:
BMJ: As a doctor with long covid, I feel abandoned by the NHS

quote:
One key feature of everyone I know with long covid is that we “pushed through” the initial stages of our illness, believing that we could get better by carrying on and ignoring our bodies. As a doctor, the system I worked in and the martyr complex instilled by medical culture enabled that view. In medicine, being ill, being human, and looking after ourselves is still too often seen as a kind of failure or weakness.

Being a doctor was how I defined my life, but eventually I was unable to carry on working. Now I’m in constant pain. I struggle to sit, walk, or play with my children. Like thousands of other people, I face the stark reality of being left behind—thrown away because I am now disabled.

https://www.bmj.com/content/380/bmj.p337
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Pretty telling that it's anonymous. I don't know why that's not addressed. There is such disrespect and contempt for this issue that a GP pleading for reason feels that they have to be anonymous to say so.

It's also amazing that in most of those accounts, there is still zero awareness that this is a long-standing issue, such that the writer probably had their fair share of it, sent patients like them packing exactly the same way they now understand is harmful. An entire system nearly incapable of self-awareness. Amazing.
 
Not that it alters your general point, but this particular account reads more to me as a relatively younger, hospital-based clinical doctor, rather than a GP. It is possible she worked in an area that had little intersection with ME/CFS. I imagine someone who was prepared to be open and reflective (anonymously) would be more likely to have made a comment joining the dots of systemic failure.

I frequently neglected my needs or personal life for work. I miscarried at work, and continued with my clinic, not even giving myself time for a brief cry in the toilet. I missed a friend’s funeral because they were not a “first degree relative."
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There's a good reason some, like me, saw LC coming long before most. All I did is work with the raw data, the patient reports, and looked at the patterns. The patterns are unmistakable once you pay attention. None of those patterns are taught in medical school, and physicians only look for those patterns. Even when they are plain to see, consistent and logical.

But of course any system that discards raw data, doesn't even accept it as input, will fail miserably. It doesn't matter how many millions of reports there are of an issue, if they never make it into any records. That this has been on purpose makes this criminal, it never should have happened, this is all human folly and dirty politics.
Binita Kane on Twitter said:
Treating #LongCovid I’m struck by the similar vocabulary used by multiple patients independently to describe symptoms; ‘Feeling severely poisoned’ ‘Internal vibrations’ ‘Pressure at base of skull’ ‘Small animal trying to scratch its way out of my chest’ - to name a few.
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Most physicians don't see those patterns, even when they look right at them. It's the training, it can only be the training when so many amateurs, simply by experiencing it themselves and comparing to others, can easily grasp this in weeks. I don't think there's a single comparable in any profession, blatantly rejecting reality and substituting their own to massive documented harm that just keeps going and going. Those things are common with corrupt politics and business, they are never the product of a profession acting of their own free will and motivation.
 
Yup, this sounds like your average evidence-based medicine. I don't know what people expected from an evidence-validation process that is based on popularity, biases and opinions happening in private clubs among friends, but this is pretty typical of EBM:
Imagine having a paper rejected because "all #LongCovid patients recover after a few months or a year" - despite data in the paper highlighting that this is not the case!
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Kalliope said:
BMJ: As a doctor with long covid, I feel abandoned by the NHS

quote:
One key feature of everyone I know with long covid is that we “pushed through” the initial stages of our illness, believing that we could get better by carrying on and ignoring our bodies. As a doctor, the system I worked in and the martyr complex instilled by medical culture enabled that view. In medicine, being ill, being human, and looking after ourselves is still too often seen as a kind of failure or weakness.

Being a doctor was how I defined my life, but eventually I was unable to carry on working. Now I’m in constant pain. I struggle to sit, walk, or play with my children. Like thousands of other people, I face the stark reality of being left behind—thrown away because I am now disabled.

https://www.bmj.com/content/380/bmj.p337
Click to expand...

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Scientific American has an article about Long Covid which includes a section on ME:

Long COVID Now Looks like a Neurological Disease, Helping Doctor to Focus Treatments

Quote:

Postviral syndromes have been documented for more than a century, arising after infection with viruses from HIV to the flu. Epstein-Barr virus, which causes mononucleosis, is one of several viruses linked to a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is estimated to affect at least one and a half million people in the U.S. ME/CFS bears striking resemblances to long COVID, with symptoms such as immune system dysregulation, fatigue and cognitive dysfunction. “One of the patterns we see is patients who definitely meet the criteria for ME/CFS. This is something we are seeing and treating all the time” in long COVID patients, Pittman says. ME/CFS can be severe, with some people losing mobility and becoming bedbound.

Nath, who also studies ME/CFS, says that “we think mechanistically they are going to be related.” Researchers suspect that ME/CFS, like some cases of long COVID, could be autoimmune in nature, with autoantibodies keeping the immune system activated. ME/CFS has been difficult to study because it often arises long after a mild infection, making it hard to identify a viral trigger. But with long COVID, Nath says, “the advantage is that we know exactly what started the process, and you can catch cases early in the [development of] ME/CFS-like symptoms.” In people who have had ME/CFS for years, “it's done damage, and it's hard to reverse that.” Nath speculates that for long COVID, if doctors could study people early in the illness, they would have a better chance of reversing the process.

Torgerson hopes that researchers will ultimately come to better understand ME/CFS because of COVID. “COVID has been more carefully studied with better technology in the time we've had it than any other infectious disease ever. I think we'll learn things that will be applicable to other inflammatory diseases driven by infection followed by an autoimmune process.”
 
It is sad, but not unexpected, to see the lack of anything actually discovered in this article.

It is a bit like a report on a collection of different sized space ships landing in Bridlington. "Scientists speculate that they might be from Mars or Neptune or another solar system (er yes)." "Professor Jack Whoever has a theory that the passengers my talk in funny robot voices and keep going on about exterminating people." "Professor Lynnette Uber-Strobes says that we may have to treat each crew differently - maybe with garlic or stakes through the heart or salt water - so we need a multidisciplinary team of garlic throwers and firemen."

I could find absolutely nothing beyond what one could have predicted would be speculated by people who haven't a clue what is wrong or how to treat it.

Maybe this is an illustration of something that I have speculated before about - that the reason why nobody has any idea about ME is the same as the reason why nobody has any idea about LongCovid. Simply because it is too hard. We don't have the understanding or the means to solve this type of illness yet. Of course, it must be good to have all this focus on post-viral illness, but the first lesson is that it hasn't been cracked before because it isn't easy. I doubt the old chestnuts like neuroinflammation, viral persistence and autoimmunity will get us anywhere. More likely Maureen Hanson's urine metabolites or GWAS. Something nobody has predicted. Maybe Edinburgh should put in for money to repeat the GWAS on 10,000 LongCovid cases.
 
Jonathan Edwards said:
Maybe this is an illustration of something that I have speculated before about - that the reason why nobody has any idea about ME is the same as the reason why nobody has any idea about LongCovid. Simply because it is too hard. We don't have the understanding or the means to solve this type of illness yet.
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This is dispiriting but probably true, unfortunately. I had always held out hope that the reason we have no idea is that there hasn’t been enough research yet, and that a/the break would be forthcoming with just a bit more research/funding.
 
Jonathan Edwards said:
Simply because it is too hard. We don't have the understanding or the means to solve this type of illness yet. Of course, it must be good to have all this focus on post-viral illness, but the first lesson is that it hasn't been cracked before because it isn't easy.
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Maybe it's only hard to solve because it goes against established wisdom and the right idea appears as nonsense.

A way to make progress in such a situation might be to rely less on conventional wisdom and go back to old school methods of doing science which involve more experimentation and poking things to see what happens, so to speak.
 
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