Long Covid in the media and social media 2023

More on this story:

Dutch Post-Covid physicians and scientists no longer wait for governmental research programmes - they now start their own
programmes...

Source,

https://www.volkskrant.nl/wetenscha...-zelf-onderzoek-doen-naar-postcovid~b5c4917b/

No paywall,
https://archive.ph/B4z9

In order translate the text from Dutch to English, copy the text to,
https://translate.google.com/?sl=nl&tl=en&op=translate

 

Legitimacy isn’t binary but a spectrum. ME like LC has some legitimacy. There has been a reasonable amount of fundraising for ME/CFS research in some countries but not so much others. For example, in your country Canada there was no research fund until the Open Medicine Foundation Canada started there a few years ago. So presumably virtually no fundraising for research in a country of 38 or so million people. That’s not a good strategy to ensure speedy research progress because, to get back to my original point in reply to the Twitter comment, governments don’t fund enough research to ensure speedy progress for all illnesses. I think this attitude that governments are responsible for speedy research progress is what has held ME/CFS research progress back and the same could happen with long Covid (though long Covid does have an advantage over many illnesses in terms of government funding).

In life, I don’t think it’s a good strategy to wait till things are perfect before doing things (including fundraising for research). Lots of charities in general don’t have universal support but can still exist and make a difference just fine.

Anyway this has gone a bit off topic.

 

Perfection being the enemy of good is what they call that in NL and I think in English too. I think the WASGF3 finding illustrates that point to a degree, starts out with a woman writing to a researcher and that researcher doing an n=1 study. Might become something more. I've been trying to get people to donate, sign petitions etc. and it's frustrating as hell, but then when you see a couple familiar names pop up on change.org or you hear that your cousin has transferred a bit of money to a charity(omf in this case) it kinda feels worth it.

I also think people are more inclined to help when they see you trying to help yourself, whether that be governments or just people you know. I know there are lots of people that simply can't because of the severity of their disease and a lack of resources, but from my own experience telling people that I'm donating a little bit of money has made it easier to persuade a few others to do so too.

 

Salon: The doctors with long COVID who have been left behind
Long COVID is putting health care workers out of work with serious consequences for everyone

A running theme of articles focusing on doctors affected by LC. I hope it does some good.

 

Same applies whether the money is public and private and the converse is also true: people leave fields when there is a lack of funds

 

A Swedish radio program (audio, 20 minutes).

Vetenskapsradion på djupet: När tröttheten efter pandemin hänger kvar – här är behandlingarna som testas mot postcovid
https://sverigesradio.se/avsnitt/na...ar-ar-behandlingarna-som-testas-mot-postcovid

I haven't been able to listen to this one myself. A friend who has listened to it told me that "former ME patient" Hanna Fries says she is nearly recovered now, thanks to various medications and a neuroplasticity program.

 

Article in the Times today on Long Covid, specifically how to treat/recover from it predominantly based on one interview with a doctor from a LC clinic: https://www.thetimes.co.uk/article/...id-the-experts-on-what-really-works-x608dqjm0

The clinic is Oxford, and tbf the stuff from the doctor there isn't that bad (at least emphasises rest genuinely, notes that research has been based mainly on those who had severe covid and breathing issues acutely so isn't the same demographic that is at long covid clinics etc) apart from the sleep advice being the usual generic sleep hygeine and don't nap too much. I don't understand how someone can get the rest stuff and not push through, but not get that the sleep stuff might be related to the exhaustion of that and basically be talking about pushing through on sleep. But hey maybe that's just me that sees that fallacy as barn-door obvious and always has.

Anyway a few concerns on the article seems to be inserts that I could assume come from the journalist themselves as they aren't 'quoted' necessarily, but the second one of these is a bit of a 'classic' re: 'recovery' being about 'understanding recovery looks different to what you think it will' and the first being a dodgy as... description of the lightening process as if it is something benign that if it didn't come from the doctor (and even if it did) didn't need to be in there so makes me suss of 'connections/conflicts of interest':

I don't understand how the medical profession can self-talk themselves into this delusion, which seems to be the psychosomaticists basically tricking everyone about their method being 'help' rather telling patients to learn to put-up-and-shut-up and measuring that, normally coerced, survey response whether it makes their health, life and happiness much worse or not. But I suspect psychosomaticists put the wellbeing of patients at the bottom of the stakeholder pile in their 'medicine', so...

 

https://twitter.com/user/status/1719339982169452993

 

https://twitter.com/user/status/1719388641057771619

 

Most people would respond to follow-ups from a good clinic that helped them. If they're not bothering to respond, it's an evaluation on your service. And that evaluation is: zero.

Hard to square the whole "gushing about LP" when this is literally what it is. I guess they don't bother checking.

The emphasis on "people can recover" is just weird at this point. Of course they can, it just happens less when people are sick longer, and the whole confusion has happened precisely because chronic illness is not counted and not diagnosed until it's past the point where recoveries are few, a completely arbitrary decision. What a dumb own goal that also happens to kick people in the face.

 

I can see why they think ‘CBT’ and reframing how you see it works as people who are HCPs and not ill: if only we accept WE are the problem for calling being debilitated ‘a problem’ instead of distorting our thinking and nasty communications like them (which IS basically bigotry ie the definition of, core of, heart of what bigotry is ) and stopped expecting anything then it’s all great for THEM.


A whole system set up to remove the patient voice or body observations from existing - they just do what they fancy and ignore hearing or seeing the outcome and when they do ‘rephrase it’ as fine for us


Whilst of course at the same time such people also tend to give no leeway in workplaces or as friends for when we can’t do something on time or get up to get somewhere early etc and worse than hearing it and snarling at it just ‘won’t hear it’ when you say the reality snd they stick their replacement words in your mouth. They just disappear a person I can’t tell you how viscerally violating of one’s body that is yet gif some reason they think they atttitudd not the worst bigotry by de-existing reality ever.

even when they write that their claims are based on no facts and no follow up you can hear that they believe they are saying the opposite - it’s weird and so so so deluded

 

Op-ed: Improving long COVID treatment by learning from the past

https://www.hsph.harvard.edu/news/h...ng-covid-treatment-by-learning-from-the-past/

 

Soooo... the co-authors are jumping on the BPS wagon then? Who could have guessed that?

 

https://twitter.com/user/status/1719460791940743240


The U.S. #Census is considering survey changes that would reduce #disability prevalence estimates from 14% to just 8%. Such changes are troubling in that they could conceal C0VID-related health consequences.

 

Agreed and I'll add that how real a patient's symptoms are treated is a spectrum too with psychologized physical symptoms scoring the lowest but the BPS Brigade try to portray us as irrational for not wanting to associate our illness with anything psychological. They can cry "Stigmatizing mental health" all they want but it won't change the reality of how we're treated.

 

I think that just by saying mental health is so stigmatized they're in fact stigmatizing mental health.