Long Covid in the media and social media 2023

First novelty account I've seen yet. This is sarcastic:

https://twitter.com/user/status/1634620572284993536

 

Yikes, on her (Delores)profile bio it says, "I am here to promote Long Covid Purity - if you are a filthy Mudblood from another virus we don’t want you - that means you CFS and POTS", and yet she's following ME/CFS researchers and pwME?

Is this sarcasm?

 

Yes ! Though I think the account holder probably sees it as ironic satire.

 

Yeah, it's parody. Holding a mirror, as it said in a comment.

 

I'm quite sure it must be a parody sort of account.

Btw, short personal story: yesterday a person with LC was asking about the reactivated EBV theory in my group and what we think. And another person with LC replied and also added that now, because of long covid doctors are also starting to make the assumption that other viruses might also cause long-term symptoms. The wording sounded like this was more of a hypothetical thing and something not known before, only due to covid. I don't think this was a terrible comment at all but as it is an ME/CFS group, I wanted to give a more accurate story in my own reply.

So I mentioned the Royal Free outbreak, Lake Tahoe and the CDC and how it was in the news in the US back then, the Dubbo study or the study about CFS and the first SARS outbreak. I also mentioned how the best medical school teaches ME/CFS in Hungary: they included the IOM criteria in the CFS chapter, so the author was familiar with the IOM report, yet nothing else from the report was included, including the statement that longitudinal studies show a link with EBV (and possibly other viruses cause it too). And the chapter is otherwise fully BPS. But this kind of stuff could have been known and even mentioned at medical schools at least in the past couple of years due to the IOM report at least. So the situation is not that they are only hinting at this possibility now, hypothetically, that other viruses might trigger long-term symptoms too but that there has been "hinting" for decades and it was basically ignored. And she just deleted her comment and left the group which was kind of a weird reaction I thought.

 

Not sure if this has been posted but wanted to get everything in one place.

Ruth on 5 news said they would do a piece on ME

When asked about ME later Ruth replied about mentioning ME during 3 podcasts on Long Covid.

5 News - Living with Long Covid - with Dan Walker and Ruth Liptrot

https://podcasts.apple.com/gb/podca...ys-to-get-better/id1659873432?i=1000590410374

I've used some software to transcribe the episodes and have uploaded them to this post.

 

I did a quick search for any mention of ME, I could have missed some though and not listened to them all.

Here they are:

 

Also noted this from episode 2

 

God, groundhog Day endlessly

 

Created a thread with some clips

https://twitter.com/user/status/1635370313205809152

 

The main takeaway from patient testimonies is how truly horrible the gaslighting and ignorance (feigned or legitimate) from doctors is, how non-responsive healthcare systems and how it adds insult to injury. And there's no treatment anyway.

Meanwhile the CDC be like, "hey, talk to your doctors about your little symptoms":

https://twitter.com/user/status/1635294715993292801


Just total system-wide failure. Oscar-worthy failure: Everything, everywhere, all at once.

 

That’s a joke
https://twitter.com/user/status/1603089757357346816

 

From Chris Ponting on Twitter.

"Free to use: UK #LongCovid proposal (£3m). Fell at final hurdle last week. Co-production, PPI, genetic ancestry, recovery… We’d like to freecycle genetics aspects w/ researchers worldwide. Do get in touch!"

 

“People who have a more severe COVID case may have residual organ damage from their acute infection," said Dr. Alice Perlowski, an L.A. cardiologist who has long COVID. "But, even people with mild COVID infections can develop organ damage during the course of their long COVID.”

https://laist.com/news/health/the-p...re-does-that-leave-people-battling-long-covid

 

After long-COVID-derailed career, Brandon Sutter has hope he could play again

“I’m able to work out again, and just do everyday things. ... I’ve been skating a couple days a week with the (Red Deer) Rebels. ... I can’t quite do the things I want to do, I can’t quite push it to a level I need to, but I’m getting better, and there is definitely hope it will all be behind me by mid-summer.

He’s still undergoing tests, meeting with physicians in Calgary, and even taking guidance from experts in the naturopath community, who have been a big help.

“You hit a point where you’re desperate and you’ll try anything, and low and behold, they’re the ones figuring it out for me,” said Sutter, whose issues have confounded the medical community. “It’s good to have answers.

https://www.sportsnet.ca/nhl/articl...-sutter-finally-has-hope-he-could-play-again/

 

I was really upset to see this morning that this has not been funded. There are little to no good quality studies being funded that I know of (?). Do people think this study will be funded to be done by someone else? I am not familiar with what normally happens - could anyone shed any light or offer context on what is likely to happen next?

 

https://twitter.com/user/status/1635522556991275009