Long Covid in the media and social media 2022

Yes, the medical community seems to be treating it as a catch-all, rather than specific diseases.

 

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')?

 

At a press conference following Australia's National Cabinet meeting today, the Chief Medical Officer made this claim:



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.



[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

 

https://twitter.com/user/status/1575844129682391041


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

 

Could Long COVID Become Lifelong COVID?

https://www.webmd.com/lung/news/20220929/could-long-covid-become-lifelong-covid

 

The Long Covid Plan for Ireland: Is it too little, too late?
We established centres for a heart condition that largely disappeared 18 months ago and failed to set up ones focused on neurorehabilitation
Jack Lambert is a Professor at the School of Medicine, University College Dublin

https://www.irishtimes.com/opinion/...d-plan-for-ireland-is-it-too-little-too-late/

 

Sympathetic article in a Swedish newspaper about the fact that long covid clinics in Sweden are being closed down despite long waiting lists, and how disabling long covid can be, with severe and strange symptoms.

Sara lider fortfarande av postcovid: ”Inget i kroppen fungerar som förut”
https://www.dn.se/sverige/sara-lider-fortfarande-av-postcovid-inget-i-kroppen-fungerar-som-forut/

Google Translate, English ("Sara still suffers from post-covid: "Nothing in the body works like before"")

 

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/

 

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.

 

An M.D diagnosing LC on social media:
https://twitter.com/user/status/1577075373606461441

 

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/

 

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.

 

https://www.theatlantic.com/ideas/archive/2022/10/long-post-covid-symptoms-mild-cases/670469/

The Atlantic hedging it's bets after the brilliant Ed Yong article from the other day...

 

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

 

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.

 

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.

 

Thank you. And I agree. More professionals need to challenge these narratives so the public can see it isn't a universal view.

 

"quotidian."

That sums up the message for me, in a very distressing I've-heard-this-tune-before kind of way...

 

You stopped?