Long Covid in the media and social media 2022

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RedFox said:
I highly doubt there's a single mechanism for all of long Covid. It's just too heterogeneous. I see it as an umbrella term for any health problem caused by Covid. There's no way someone who's constantly breathless has the same problem in their body as someone who gets ME, for example. Well-defined but inclusive subtypes of LC would be welcome.
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Probably - and I certainly agree with it being incredibly problematic that you have so many wanting to lump the acute with the chronic without at least giving them different 'markers' when comparing (which just feels all like the cfs, mus, lowest common denominator then claiming 'ooh there is no consistent biomarker or cause' issue).

I also agree that ME/CFS is likely types and I suspect that body propensity (having had other conditions before, 'certain weaknesses' in body e.g. if everyone got a virus for some it would always affect stomach others would always end up with tonisilitis etc in gen pop) plays a part - and think comorbities are interesting not to be excluded because whether they develop before, or after 'onset' or are 'the onset' it sort of feeds back into this. The whole 'something is contextualised in whatever it is situated into' (and that must apply for this and this type of science as much as it does for business, psychology, literature).

However, I'm not 100% sure on the breathless example now. I get where you are coming from when it is those who were acute in ICU and have lung damage. I don't know whether they are investigating all who are breathless but have heard a few medics trying to say there are those who are breathless but then talking about anxiety cliches which I assume must be due to this being missing.

It's all v hard when you consider the comorbidities bit and the fact there mightn't be 'hard boundaries' between these and ME/LC for some (? if that makes sense?) and the lack of any curiosiy in diagnostics there so it really is a soup of heterogeneity. People don't only get one virus in their lifetime and they seem to understand none of that area and dormency or latent/lingering aspects.

So I'd be intrigued if there are some in this group where there are overlaps with some circumstances of ME. But this is going to be like a giant game of snap.

Through a system that really doesn't seem to be motivated whatsoever to organise and database all of this as outsiders in other professions might assume would be the sensible approach (as it's more focused on the politics of 'where to send them that's available' than 'collect data on what we have')?
 
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At a press conference following Australia's National Cabinet meeting today, the Chief Medical Officer made this claim:

Screenshot 2022-09-30ned.png

This was to justify the removal of mandatory isolation requirements.

(And, of course, if GPs are dismissing everyone with post-viral symptoms as having "anxiety", then post-viral illness won't appear to be a problem.)

He was contradicted by the head of the AMA (a union representing some doctors) in an interview not long after. Of course, he reveals his total ignorance by claiming that you don't see cases of "long flu" after influenza infections.

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[I had an appointment with my specialist a few days ago. She mentioned that the main Long Covid clinic at the Royal Adelaide Hospital has a waiting list of 2500 people. Apparently the list is growing by 100 people a day.

Edit: I should add that the RAH clinic requires that the patient has a 'confirmed' case of covid via positive PCR or RAT and that it has been over 12 weeks from the initial infection, so this would rule out many people.]

Copied to the News from Australia thread
 
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Psychologists in Long Covid said:
Interesting presentations for NHS #LongCovid service staff. Talk about anxiety as a key factor in breathlessness. Paper we are struggling to get published has data suggests this CAN be but is not always linked. Talk also of deconditioning & need to grade exercise up. Reactions?
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Edit: fortunately, this account disagrees with this, but it seems to be what NHS physicians are taught right now; the paper they are mentioning seems to counter this and they seem nice people
Edit 2: I seem to be abusing seems here
 
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Could Long COVID Become Lifelong COVID?
No one yet knows if long COVID could end up becoming a lifelong dance with COVID-19.

Some people have had persistent symptoms such as fatigue, memory issues, or headaches for months and even years. For them, it may seem never-ending.

Yet, there are also some people taking advantage of the uncertainty around long COVID to prey on people, especially through social media groups. Buyer beware of any unproven treatments, experts say, because there are online scams targeting people with long COVID.

Three experts in public health and medicine offered these and other insights during a media briefing Wednesday sponsored by SciLine, part of the American Association for the Advancement of Science (AAAS).
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https://www.webmd.com/lung/news/20220929/could-long-covid-become-lifelong-covid
 
rvallee said:
Really not looking like medicine is responding to the most gigantic smoking gun firing on repeat and prefers to fall back on the same old familiar failure. The inability to learn from experience is just absurd.

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RTE show slammed by Long Covid sufferers over exercise advice
The national broadcaster received a flood of complaints after an episode of How Long Will I Live? which aired on Tuesday
https://www.dublinlive.ie/news/dublin-news/rte-show-slammed-long-covid-25157013
 
A Swedish report on post-covid (commissioned by the government) was published today:

Postcovid i praktiken: En kartläggning av vården och omsorgen av personer med postcovid
https://www.vardanalys.se/rapporter/postcovid-i-praktiken/

Here's a news article on it:

Vård- och omsorgsanalys: Allvarliga brister i postcovidvården
https://www.dn.se/sverige/vard-och-omsorgsanalys-allvarliga-brister-i-postcovidvarden/
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Health and care analysis: serious shortcomings in post-covid care

Half of post-covid patients do not feel they are being taken seriously by the health care system. Knowledge about the new diagnosis is poorly disseminated.

"- This is a serious shortcoming," says Siri Ståhle, an investigator at the Swedish Agency for Health and Social Care Analysis, which is today releasing a report on how post-covid care works in Sweden. [...]

The agency has been commissioned by the government to investigate how post-covid care works in the country. The final report is released today. It is based, among other things, on interviews with regional managers and staff at post-covid clinics, as well as a survey of 1 400 Swedes with post-covid. [...]

about half of those with postcovid feel that they have not been taken seriously in the healthcare system.

According to the report, only one in three people with postcovid feel that primary care staff have sufficient knowledge about their condition. The same is true for half of those who received care in a post-covid clinic.

On the other hand, people who have received care in a post-covid clinic have better experiences in terms of treatment, participation and information. [...]

54% of those who sought care for post-covid felt that they had to wait an unreasonable amount of time.

Around a third say they have been refused care altogether and many (59%) have been advised to wait before seeking care.
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Its really notable how much better Sweden is doing in recognition of Long Covid compared to the UK/US. I suspect around 90% of patients have been rejected, gaslit and the vast majority of doctors don't know what they are doing and more than half the clinics are torturing people with exercise and throwing in some CBT for good measure. I highly doubt figures would be so "good" in the UK or US if anyone ever cared to do them.
 
BrightCandle said:
A look at whether Long Covid is actually helping ME/CFS research and patients coming to the conclusion that its not and Long Covid has reduced presence of ME/CFS and hasn't changed the research funding situation at all.

https://www.healthrising.org/blog/2022/10/04/long-covid-not-helping-chronic-fatigue-syndrome/
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I'm not really sure it can be said that Long Covid has actually helped people suffering from Long Covid. It's pretty obvious that the exact same dynamic is happening: those who recover, recover naturally, and those who don't are thrown down the same trash chute they send us. There is still just as much nonsense and disinformation, still from the same people, for the same reasons.

Essentially there is a manufactured image because natural remissions and recoveries are emphasized and talked about a lot, but in the end it's the same image, it's just the perspective that has changed slightly. But the outcomes are the exact same: thoughts and prayers is what healthcare systems supply, chance and time are the only relevant factors for the patients.

I'd say possibly the only real difference is that there are a few things that long haulers are doing that we couldn't, mainly the advice on pacing and rest, with maybe things like antihistamines that help a few. But this didn't come from healthcare, for the most part medicine is completely irrelevant in the vast majority of cases, bystanders at best.

Basically the difference now is that there are a few Milhouses watching the building fall down. Whether it falls or not is not dependent on there being an observer. And if it does, they still can't do anything because the effort simply isn't there yet.
 
Charles B. said:
Gaffney is striving to become a Wessely like figure in the U.S. He essentially galavants about unchecked, pushing a deconditioning and hysteria paradigm. Really disappointing to see further amplification of his views. Dispiriting to say the least
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My heart sank when I saw his name. Very disappointed in The Atlantic for publishing him.

The worst thing is that every time I read something like this I start gaslighting myself.
 
V.R.T. said:
My heart sank when I saw his name. Very disappointed in The Atlantic for publishing him.

The worst thing is that every time I read something like this I start gaslighting myself.
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I empathize with all of these sentiments, and I want you to know you have a supporter in me. It’s pivotal we recognize Gaffney as in intransigent ideologue, and view his musings through that prism. I’ve implored some researchers and physicians in our orbit to challenge his commentary, but I’m afraid they’ve been reluctant to do so. I do believe David Tuller and some other journalists wrote about repeating BPS mistakes and Gaffney’s role in that. I’m grateful, but just believe we need something more piercing from a respected medical professional.
 
Charles B. said:
I empathize with all of these sentiments, and I want you to know you have a supporter in me. It’s pivotal we recognize Gaffney as in intransigent ideologue, and view his musings through that prism. I’ve implored some researchers and physicians in our orbit to challenge his commentary, but I’m afraid they’ve been reluctant to do so. I do believe David Tuller and some other journalists wrote about repeating BPS mistakes and Gaffney’s role in that. I’m grateful, but just believe we need something more piercing from a respected medical professional.
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Thank you. And I agree. More professionals need to challenge these narratives so the public can see it isn't a universal view.
 
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