Long Covid in the media and social media 2023

Status
Not open for further replies.
Dakota15 said:
I’m biased, but there has been a ton of MN advocacy here in the last few years @SunnyK.

Happy to also see the recent news that Dr. Stephanie Grach of the Mayo Clinic (Rochester, MN) became the 21st member of the US ME/CFS Clinician Coalition (the only MN-based clinician on the list).

Local advocates know how much progress that indicates, given how far MC was as a whole behind previously in ME - and how Minnesotans felt that firsthand.

Getting to this point already has taken many efforts, and some paradigms do appear to be changing in ways for the better.

https://mecfscliniciancoalition.org/about-us/
Click to expand...
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!
 
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)
Cal Matters said:
These are three out of countless stories of long COVID among Californians. Recent CDC surveys suggest 5.5% of California adults — roughly 1.5 million people — currently experience the ill-defined, mysterious and often debilitating collection of symptoms that make up long COVID.

A majority of them, 82%, have some limits on their activity. While most of society rushes eagerly back to pre-pandemic life, these patients, known as “long haulers,” have been largely left behind by their communities, doctors and policymakers.

“It’s a pandemic of loneliness and social isolation and rejection,” said Ibrahim Rashid, a long hauler and founder of Strong Haulers, a startup app designed to make chronic symptom management easier.
Click to expand...

Cal Matters said:
...
the policy legwork has fallen on two people: Lisa McCorkell, co-founder of the Patient-Led Research Collective who has suffered from long COVID since March 2020, and Art Mirin, whose daughter has a similar post-viral condition called myalgic encephalomyelitis/chronic fatigue syndrome.

Together, McCorkell and Mirin have drafted budget proposals, solicited letters of support from disability advocacy groups, and met with legislators and staffers. They’re doing the work that political power players pay lobbyists millions of dollars to organize — so far to no avail.

“One of the big issues with long COVID…is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene,” McCorkell said.
Click to expand...
 
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.

In Germany, during a neurological #PostCovid consultations, it's now advised to stop wearing masks and allow the immune system to work/train. In clinics all around, masks are no longer worn.
Click to expand...


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

i say "seems to prefer" because the LC Is Unique Group has yet to really dip their toe into the advocacy space outside of twitter (please correct me if i'm wrong here). their main argument seems to be existing advocates have accomplished very little in three years

allow me to do a little editorializing here and say i feel as though there is a healthy amount of ableism and privilege baked into the LC Is Unique Group. picking fights with other disabled people being a prime example as well as the insistence on a "cure

LC Is Unique Group also tends to insinuate previous generations of disabled people didn't fight hard enough for research & treatment. perhaps this suggests a poor understanding of disability history in this country.. it might just be punching down, i'm not sure

i should also note some of the loudest members of the LC Is Unique Group are white formerly abled men from middle class backgrounds. i too am a white formerly abled man from a middle class background so don't call me a "man-hater". just noting the socioeconomic makeup here
Click to expand...

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).
 
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.
Enough is enough. Allies: please send an email to one of these @UCSFMedicine folks about Prasad’s continued mocking of patients. It’s completely unreasonable not to know basic mechanisms of post-viral illness in 2023, let alone be allowed to continue to cause harm. #LongCovid
Click to expand...
 
Status
Not open for further replies.
Back
Top Bottom