Long Covid in the media and social media 2023

Honest talk, if that can happen so easily, maybe most of that progress was largely an illusion? Maybe some questionnaire effect at the right place?

Hopium is not a viable strategy. Never will be.

 

Oh of course! I'd forgotten about Mayo's importance. In fact, one of my childhood friends who now lives in NY returned to Mayo to get her diagnosis. Thanks for the link and the doctor's name!

 

This professor is a global coronavirus expert. Now he has long COVID

https://www.afr.com/life-and-luxury...-expert-now-he-has-long-covid-20230427-p5d3t7

 

@Jaybee00

I posted it here earlier today:
https://www.s4me.info/threads/this-...pert-now-he-has-long-covid.33085/#post-472529

 

Oops my bad.

 

Long COVID in California: ‘A pandemic of loneliness and social isolation and rejection’

https://calmatters.org/health/coronavirus/2023/04/long-covid-california/

(line breaks added)

 

Ditto -

 

https://twitter.com/user/status/1652225056494215177

 

Dt. Ges. für ME/CFS (The German Society for ME/CFS) provides an infographic "overview on selected replicated findings in #MECFS and #LongCOVID"

 

About the barrier to do something about LC, as @ahimsa posted earlier from the article, "Long COVID in California...", this also absolutely applies to ME. Both these diseases are very debilitating. Many pwME are too sick to campaign for awareness etc.

 

I wish I could say this is surprising, but at this point it seems almost expected. Not the only instance of this I've seen, the idea that people need to be regularly infected in order to train their immune system seems to have been bought by the medical profession hook, like, sinker, fisher and boat. Medicine has seriously gone back on centuries of painfully learned lessons and is still unable to accept the germ theory of disease and its full implications.

I have seen a few instances of long haulers who experienced dramatic improvement from an infection. Far less than the opposite, however. Far, far less. Medicine is now failing at keeping people safe in their own facilities as a standard operating procedure.

https://twitter.com/user/status/1652274280892100611


Meanwhile if you ask ChatGPT for this it think it's a terrible idea. So it's easy to see where the future of medicine is.

 

https://twitter.com/user/status/1652521612665552896
see&s=19

 

Some quotes from the Twitter thread @Amw66 posted (from the same poster).

A variation of this happens in my group too, although not on a large scale. And these people in my group definitely don't think "LC is unique", they actually believe these post-viral syndromes are the same or at least very similar. However, I still encounter this when I see comments like "only covid is helping us, literally nothing else is going on that is helping us" or "there is no change as I can't feel it in Hungary at all and I've been ill for 2 years now, so none of this ME/CFS stuff in the world matters, it's pointless" etc. This latter person also called my efforts useless. Once I got it from one pwLC that the past advocacy of pwME doesn't matter, they obviously failed/weren't doing it right/were inadequate etc. So he doesn't care.

I believe this is mostly down to ignorance, being uninformed and not even really interested in being informed, not realizing yet how hard all of this really is. I'm trying to tell them that pwLC didn't actually start from zero, because due to ME/CFS, there was already some literature in medicine about PEM, pacing and that the IOM report or NICE guideline play a role in all the movements in these various countries to improve medical care/research etc. PwLC can quote NICE on GET and CBT. So these movements didn't come out of nowhere only due to covid. Yes, covid is a major help to be more visible to the world but it didn't actually start with it, the big change started a couple of years before that.

I just believe some people (absolutely not everyone!) are really unable to put these things into perspective. And as I said I don't get these comments in my group a lot but it kind of still gets old to listen to them when you are the only person doing anything at all on the advocacy front in the entire country both for ME/CFS and long covid (as we have zero long covid advocacy here) from people who never help (although being less badly affected than you are) or have a good word for you. On the other hand, there are (more) pwLC who are absolutely grateful.

I just see this as an annoying personality type, to be honest (in my own group). And I really dislike it myself that I have to spend some precious energy I could use elsewhere to refute them in my group, so other members don't think this is correct information about ME/CFS and that hard work was not put in (especially when this is addressed to me).

 

Missing from the above discussion on twitter is the 'LC is unique' group, while dismissing all association with ME, still appropriated all of 'our' terminology and tried to make out that it was unique to LC.

 

Agree. Reading all the different definitions of PEM will only set up back imo.

 

Long story short: in response to the Stanford clinic removing masks in their LC clinics, a few MDs started openly mocking Long Covid on Twitter. One of them is famously-wrong-about-everything Prasad, a prominent COVID maximizer.

Now, we have been openly mocked and bullied this way, and worse, for years, and pushing back against has always lead to DARVO (deny, attack, reverse victim and offender, i.e. "I'm the real victim here"). We know this playbook from our BPS overlords, how they always turned the horrible consequences of their bullying into more attacks on us, abusing their powers behind the scene to pass their ugly bigotry as some sort of valid clinical expertise. Because I guess it's hilarious to mock disabled people?

As a consequence of how we have been attacked far worse in response, there are lots of pwME who are very hesitant in being openly confrontational, in challenging our abuse and our abusers. So, there will be opinions on this, but personally I look back at the decades of playing nice with our abusers and the people who kept promoting or defending them as a loss but something we did not have an option, the ugliest discrimination was simply too popular and easy. But things have changed. It's time to go on the attack, or at least to push back on open displays of abuse and mockery, and especially of denial. Professionals shouldn't be denying basic facts, it makes a mockery of the idea of expertise.

All viewpoints are valid here, IMO. But I don't think we're getting anywhere being nice, or at least being too nice. We'll just get millions more buried alive with us. Until it is shameful to bully sick people, until the last acceptable form of bigotry, against sick people, is no longer tolerated, we will only get failure and bullying. It's a tradition that goes back too long to change without making good trouble.

https://twitter.com/user/status/1652759122146742272

 

Prasad blocks mocks well respected MDs as well.
https://twitter.com/user/status/1504771138513158150

 

They’re going to say the same things about us whether we actively protest this or not. I agree unequivocally regarding the offensive tactic. Same with Carson, Stone, and the FND crowd.