Long Covid in the media and social media 2022

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https://www.theguardian.com/science/2022/jun/26/can-our-mitochondria-help-to-beat-long-covid


But why do the mitochondria of these patients become sluggish in generating ATP? David Systrom, a pulmonary and critical care doctor at Brigham & Women’s Hospital, Boston, believes he has found answers through studying patients with ME/CFS, an illness that in many cases is precipitated by viral infections such as Epstein-Barr and bears many similarities to long Covid.


When Systrom studied the mitochondrial DNA of these patients it appeared to be normal, but after taking a deep look and conducting muscle biopsies, he identified abnormalities at the electron level, deep within the mitochondria.


“In both ME/CFS and long Covid it’s most likely that these are acquired forms of mitochondrial dysfunction, perhaps related to the initial infection itself or an autoimmune response to a virus or both,” Systrom says. “This impedes the mitochondrial machinery, but doesn’t affect the DNA itself, and it means the mitochondria then fail to generate appropriate amounts of ATP to serve the needs of the muscles.”


Systrom is now running his own clinical trial in both ME/CFS and long Covid patients, in partnership with Japanese drug company Astellas, which has developed a drug that aims to restore normal mitochondrial metabolism.
 


I'm conflicted by this, because they are asking for the privilege to be the only people protected by this. I understand people can't be expected to think about the big picture while suffering, but the fact is that protection from illness and disability is a privilege, denied to many, and it won't change as long as it's accepted.

I don't see a real difference between healthcare workers being infected on the job and anyone else, whether it's teachers or store clerks, or really anywhere. There is supposed to be a right to be protected from illness and disability, but it's only a paper right, it only ever works this way, with people fighting for their own privileged status rather than recognizing that this is supposed to be a right that either extends to all, or can be denied to anyone for any reason.

I am additionally mildly annoyed that the healthcare systems they work(ed) for have been doing this to other people, and they can't make the connection, rarely seem able to acknowledge the fact that what they are suffering is not a unique injustice, but rather the universal norm in chronic illness, a norm they all played a role in enforcing, even if mostly unwittingly.

The whole point of rights is that they are universal, no exceptions. The counterpart is duty, which is also not supposed to have exceptions. The real big picture here is that many of those rights and duties regarding health exist only on paper, are nothing but cheap words because they have so many exceptions and exemptions.
 
It's easy to blame the media for their failure, but they are citing the work of medical experts here, who are themselves confused and confusing everyone. Either medicine reforms itself massively, or we never get out of this mess, acute/deadly or chronic Covid. This is not a functioning system. Without the help of technology that can measure reliably, medicine is completely lost. I'm at the point where I would frankly question anything said by a physician, I can't take anything said at face value anymore, knowing how this knowledge came about.

Physiology, biology? Sure, what's known and solid enough to be predictive. The rest is mostly arbitrary and probably unreliable. If technological progress had stalled at where it was in the 1950's, we'd still have 1950's level healthcare. It's overall technological progress that makes things move forward, the rest is too trivial to make any difference.

 
rvallee said:
It's easy to blame the media for their failure, but they are citing the work of medical experts here, who are themselves confused and confusing everyone. Either medicine reforms itself massively, or we never get out of this mess, acute/deadly or chronic Covid. This is not a functioning system. Without the help of technology that can measure reliably, medicine is completely lost. I'm at the point where I would frankly question anything said by a physician, I can't take anything said at face value anymore, knowing how this knowledge came about.

Physiology, biology? Sure, what's known and solid enough to be predictive. The rest is mostly arbitrary and probably unreliable. If technological progress had stalled at where it was in the 1950's, we'd still have 1950's level healthcare. It's overall technological progress that makes things move forward, the rest is too trivial to make any difference.

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This was highlighted to me on Twitter in the trending/What’s happening section
 
Dolphin said:
While this seems plausible, have there been research studies that have found this? I have stopped following the research.
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There was a recent study using VA data that claimed something along these lines, but I don't think it's even measuring re-infections (and it's looking more at post-Covid risk of various bad outcomes than Long Covid as in the thing that is similar to ME). Doesn't tell us anything really.

The ONS data shows a significant recent rise in people reporting Long Covid who first got Covid in 2020 (so presumably were re-infected with Omicron), which certainly points in the direction of a significant number of people getting LC from re-infections, but we don't really have the data to say how re-infection LC risk compares to someone getting their first infection with Omicron.

So basically, people are getting LC from re-infections, but we don't really know how common it is. Seems like a pretty important question now that almost everyone has been infected.
 
News from the Netherlands.

Over half of people with Long Covid for two years are declared unfit to work

A majority of people with Long Covid who are registered with state benefits agency UWV have been so disabled by the virus they are no longer fit for work.

Employees who have been ill for two years and unable to work or work full time are eligible for disability benefits based on an evaluation by the UWV, once their sick pay entitlement expires.

Some 85% of workers who suffered from the long-term effects of a Covid infection two years ago are now receiving disability benefits. Over half of this group, some 62%, can no longer work at all.

https://www.dutchnews.nl/news/2022/...vid-for-two-years-are-declared-unfit-to-work/
 
Trish said:
The Telegraph article is paywalled. Can anyone reveal what it recommends. Replies on Twitter seem to suggest it ignores Long Covid.
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I didn't read the article but the twitter thread seems to have most of the content, is pretty long.

It advises the usual: CBT, exercise, lifestyle changes, be fit, think positive, ignore it and it will go away like magic. Says it could be anything from Covid to stress and anxiety, especially stress and anxiety and depression and fear and anything but the elephant in the room. The usual biopsychosocial playbook we're all painfully familiar with, full of ambiguity about the cause and certainty about the solution at the same time. I'm pretty sure it's a paid promotion.
 
Rushing back to exercise could cause long Covid

Young Covid-19 survivors say they would never have pushed themselves physically during recovery if they had known it may have played a role in triggering their long Covid, an expert says.

Dr Anna Brooks, a cellular immunologist at the University of Auckland who is leading a major research project on long Covid in New Zealand, has worked with young Covid-19 survivors who are debilitated after having a ‘mild’ Covid-19 infection.

https://www.renews.co.nz/rushing-back-to-exercise-can-cause-long-covid/
 
As is the case with ME/CFS, Australia is very much behind the rest of the world when it comes to Long Covid.

There's very little help (eg, public hospital Long Covid clinics have restrictions on which patients can be referred to them due to lack of capacity) and there's almost no acknowledgement of the similarity with ME/CFS. And, of course, Australian GPs still mostly believe that post-viral illness is "laziness" or "anxiety".

'I feel like I've died': Desperate pleas of women with long COVID

Mother-of-two Kristie Trudgett, 44, sobs as she describes having long COVID.

"I want my life back," she told 9news.com.au.

"I don't know what to do."

The headteacher at TAFE in Kingscliff, northern NSW, caught COVID-19 in February, and has never really recovered.

As well as constant fatigue, her symptoms include tingling so bad she describes it as "a sensation that there's poison running through my body".
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De Sterke described having to "budget" for what she can do every day, because of the "crushing fatigue".

That's compared to her previous life of going to the gym, weightlifting, cycling to work, hiking, and travelling with her partner.

She also has gastrointestinal issues, and says if she does anything as challenging as walk down the stairs, her heart rate soars.
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De Sterke is seeing experts in chronic fatigue, which has been compared to long COVID.
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Meanwhile, Miquette Abercrombie, 49, has been told she can see an expert in long COVID in Melbourne - in six months.
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"I've never felt so alone and so sick with no support."
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Professor Greg Dore, infectious diseases physician at the Kirby Institute and St Vincent's Hospital in Sydney, said the government needs to address the lack of services for long COVID patients.
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He said if people find their GP is dismissive, they should find another one.
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Mij said:
Rushing back to exercise could cause long Covid

Young Covid-19 survivors say they would never have pushed themselves physically during recovery if they had known it may have played a role in triggering their long Covid, an expert says.

Dr Anna Brooks, a cellular immunologist at the University of Auckland who is leading a major research project on long Covid in New Zealand, has worked with young Covid-19 survivors who are debilitated after having a ‘mild’ Covid-19 infection.

https://www.renews.co.nz/rushing-back-to-exercise-can-cause-long-covid/
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The level of confusion that medicine is putting about this is just staggering. Like a paper tiger deflating in the rain, just so badly unprepared. The problem is that the psychosomatic model thrives under the chaos, so there are strong incentives to sow more confusion.

 
I hadn't looked much and just had a peek and it's even worse than it seems at first. Strong recommendations for GET, argues it's basically universally recommended, again simply because.... popularity contest! Everyone does it, doesn't matter that it's useless and has never shown any actual benefits, if everyone does it, it must be good. How can rehabilitation be bad? Of course it's good and safe and useful. Somehow cites White and Chalder... from 2005.

All based on deconditioning, which unfortunately reveals beyond any doubt that medicine has absolutely no relevant idea or definition of what deconditioning means, and isn't bothered at all by contradictions that invalidate the hypothesis entirely. Contradictions such as... the linear passage of time. And common sense.

Best of all? The primary outcome? CFQ at baseline and 1 month. And it's a virtual program so they jumped straight to cost-saving by essentially arguing it's already proven that this is safe and effective as a starting point. Basically saying it must be used as soon as possible, too. Based on what? Nothing at all. Feelings. Beliefs. Tradition. Fashionable rituals. The usual.

Somehow, things are getting even worse in evidence-based medicine. At a time when the whole paradigm is failing miserably and obviously, where it is being revealed as completely unreliable in itself, it's getting dumber and more influential. Incredible. It's like medicine saw all that's bad out there in the world, "post-truth" and Truthiness and decided "I want to be part of that Big Time".

All of this can be thrown in a giant volcano, memory-holed with a memory wipeout from every drive, paper and brains and the world would actually be improved for it. That's impressive, in the worst possible way.
 
How long Covid sidelined Highlanders utility Ngane Punivai indefinitely

Diagnosed with long Covid a few weeks later, and utilising the benefit of hindsight, he wishes he never pushed through. More than three months down the road, Punivai hasn’t played since the Highlanders’ 32-25 defeat on March 26. Nor has he trained in full, as the only Kiwi Super Rugby player understood to have long Covid continues to fight to regain his fitness. “That’s the most frustrating thing,” Punivai said. “There is not a lot of research, we don’t know a lot about long Covid.
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https://www.stuff.co.nz/sport/rugby...ighlanders-utility-ngane-punivai-indefinitely
 
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