Long Covid in the media and social media 2023

Star Tribune: 'Budget that expands Minnesota health care, abortion access, heads to governor'

'The HHS bill includes research into long COVID and support for people suffering from the post-pandemic condition.'

If this is the Senate version of the HHS bill that has passed to the Governor's desk (which has been speculated), I believe this may be the first state in the US (Minnesota) with dedicated funding set aside for Long COVID & related conditions, in which it named ME/CFS & POTS.

From a contact at Minnesota Department of Health: "The Senate includes full funding beyond the next biennium (fiscal years 2024 and 2025). They also added language that would expand the scope of work to include “related conditions” – post-infection conditions such as ME/CFS and POTS potentially stemming from acute illnesses other than COVID-19."

This is the Senate version of the bill (you can search ME/CFS or Long COVID).

This is the budget spreadsheet: https://www.house.mn.gov/comm/docs/...Y8fwsQZolxkwLI6z6VEnvdxEw5bjPFORZw-pOQz-z5sMo

Per the budget spreadsheet, Minnesota Department of Health will be allotted $3.1M per year for the next 4 fiscal years to help address the laid out gaps in the bill for this patient population.

 

https://twitter.com/user/status/1660768124189155329


I'd honestly settle for speed. Doesn't need to be warp, just needs to be significantly above stationary.

 

Came here to post this.

It mostly talks about an epigenetic study of LC from 2022 and how the findings align with sustained immune system activation. And how this and other studies have replicated prior findings in ME/CFS, how this just keeps happening, that an ME/CFS connection keeps popping up everywhere in LC research. Which is late to the party, but other than the patient community the connection is still suppressed because of the psychosomatics omerta so very rarely said.

The comments say a lot about how much need and needless suffering there is out there, suppressed and covered up by the only people who are even allowed to do anything about it. This authoritarian medicine model seriously sucks. It's taxation without representation in its purest form, even the people who are supposed to advocate for us have all taken side against us.

 

How can doctors seriously talk about "building stamina" on the order of months? When people can go from couch to 5K in just a few weeks? Even if we allow the BS version of a severe illness causing a long period of bed rest, which is only a small %, it's relatively short and you get back to normal function for everyday living quickly. None of this explains relapses and PEM, so they just ignore it entirely.

There was even a major BPS ideologue who said mostly that, that rehabilitation doesn't take months so if you're in that range, you're doing it wrong. This is obviously nonsense. How do they not see that it doesn't make any sense?!

And they're still pretending that most people recover without doing anything, clearly a natural process, but somehow they attribute those to their effort if they happen to be in such a program, but not without? This is madness, no system can function properly with that much delusion about what they're doing, with such careless disregard for basic facts.

 

https://twitter.com/user/status/1661014945331544067

 

That's scary. While making definitive statements about a stranger's coworker's health is impossible, it reminds me of the story of Lee Holloway. He co-founded Cloudflare, a massive networking company, and got early-onset dementia in the middle of his career. When his personality changed, people thought he was just becoming a jerk.

 

A form of 'mild' Covid where people are unaware that they are cognitively declining.

 

Text of Tweets

Great audio clip with Rep. Anna Eshoo

Typical response from Dr. Koroshetz in the article
'Screaming Into a Void': Long COVID Patients Have Waited in Vain for Years for Treatments

https://www.kqed.org/news/11950643/...-have-waited-in-vain-for-years-for-treatments

Edited to add article title.

 

Koroshetz showing what lack of courage leads to. The NIH is the premier medical research institute in the world. In the world of medicine reputation is everything. Garbage from an eminent source is always taken more seriously than solid science from the fringes. They carry a lot of weight in changing attitudes. But they don't. They want to do this the standard way, even if it's the wrong way.

While they take their sweet time making all the same mistakes no one is getting any help anywhere. And if things are just so bad, so antagonistic that they hold us in enough contempt to be happy with failure, that it wouldn't make a difference then it's all the more reasons to understand that without courage all of this will fail. All of it. And everything they say sends the clear signal that this is the conclusion that nearly everyone was willing to end up.

 

Guardian Interview — Immunologist Akiko Iwasaki: ‘We are not done with Covid, not even close’

 

He doesn't get it. They got over a billion dollars over two years ago and haven't started a clinical trial. Trials of generic drugs would be cheap and you could even do them remotely.

Has the FDA announced incentives for long Covid? Proposed ME or LC treatments should be designated as breakthrough therapies because there are no current treatments.

 

Some hospital published a very condescending "exercise is a cure for Long Covid" (it says "can help" but we all know how it's used in real life), out of "may improve" but even the study doesn't really support that, they're simply doing the usual BS of taking the outcome of recovery/remission and reattributing it as the process. It features kids playing soccer, because you know how it is, we just forgot how to have fun, or move, or whatever.

Somehow, despite having said nothing about LC in over 8 months, the American Association of Family Physicians tweeted their enthusiastic support for findings that the study doesn't even support:

https://twitter.com/user/status/1660708711290077189


I checked their account and they published a few articles over the years about LC, none of them any good, and nothing since August 2022. This is extraordinary level of being wrong. While they make extraordinary claims that have no ordinary evidence.

This all basically feels like the story about when NASA crashed a lander on Mars because one of the teams involved in tracking altitude used imperial instead of metric. Except it didn't just happen once, it kept happening and in fact continues to happen. It's such a spectacular level of being wrong, you can basically label it professionally wrong, as in a level of destruction that only professionals can cause, like the difference between destroying things with a shovel vs. a giant bulldozer that spews fire and throws dynamite.

 

BBC News Quiz mocking people with long covid again:

Last week I emailed News Quiz to express my disappointment that they were making fun of people with Long Covid. Their only response was to repeat the offence this week. Haven’t decided if I will send a formal complaint but others on Twitter have said they have.

We can’t make political comments on here but I would suggest that there is a correlation between people with certain political views and those who think it’s funny to mock people who are sick and disabled (particularly with LC and ME/CFS). I note that Simon Evans writes for Spiked, which emerged from the ashes of Living Marxism (later LM) and has various associations with BPS proponents. Another panellist is from the Tufton Street stable which also has RCP/LM connections.

LC jokes at start of episode 4: https://www.bbc.co.uk/programmes/m001lz10

LC jokes at 16m: https://www.bbc.co.uk/sounds/play/m001m53k

Only available for 31 days from date of broadcast.

 

Paid ads on social media, Karolinska in Sweden is recruiting participants for a long covid study:

Deltagare sökes till en studie om långtidscovid
https://nyheter.ki.se/deltagare-sokes-till-en-studie-om-langtidscovid

 

I wrote to complain about this week's incident. I didn't hear the previous one.

 

And I thought American morning shows were crass.