Long Covid in the media and social media 2023

[Dakota15]

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.

 

[rvallee]

Today I spoke to members of Labor Health & Human Services Appropriations Subcommittee(aka the money men for the entire US health community). #LongCovid is real & will continue to impact millions more. Stressed the importance of operation warp speed for treatments! #MECFS #POTS https://t.co/KIAvl9gFvR

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

 

[Sean]

 

[rvallee]

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.

 

[rvallee]

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.

 

[Mij]

 

[RedFox]

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.

 

[Mij]

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

 

[Laurie P]

Text of Tweets

charlos
@loscharlos

Myself & others spoke to @KQED on how we still have ZERO plan for #LongCovid “This isn’t a mild condition. This is completely life-altering… We have patients who are taking their lives. This is the fastest-growing health crisis in America.”

Here’s the audio clip that ran on the radio about @RepAnnaEshoo questions for NIH — I personally found this encouraging. We need all of our reps demanding answers on where we are with #LongCovid treatment.

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

But the National Institutes of Health, which in 2020 received more than $1 billion to research long COVID, says it’s taking a cautious, big-picture approach.

“We are being a little more deliberate. Particularly to try and get something to have a high-effect size in patients and really make a big difference,” said Dr. Walter Koroshetz, co-chair of the NIH’s RECOVER Initiative (Researching COVID to Enhance Recovery). “[We want to] test therapies which we think might help reduce the symptom burden in people who are suffering.”

Koroshetz said he understands the frustration long COVID patients feel, but noted that even though it’s not a new condition, “how it happens in people is not well understood.”

Nevertheless, Koroshetz says he’s confident treatments to reduce debilitating symptoms will be available fairly soon.

“We’re also hoping to test drugs that go after the main culprit for the biological cause of long COVID,” he added.

But so far, the NIH has not started a clinical trial for possible treatments. One of the only official long COVID clinical trials is underway at Stanford University, to determine whether Paxlovid can be an effective treatment. But it isn’t even being led by the NIH, and results aren’t expected until late this year.

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

Edited to add article title.

 

[rvallee]

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.

 

[SNT Gatchaman]

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

Long Covid is a blanket term that likely describes multiple diseases with different causes. We still don’t have the answers, but there are some hypotheses that are becoming more likely and others less likely. There’s more evidence now showing either viral proteins or viral RNA in various tissues, months after infection. The hypothesis that long Covid symptoms could be caused by the reactivation of latent viruses such as Epstein-Barr virus is also gaining momentum.

I always have in the back of my mind – how can these insights from long Covid help people with ME/CFS and other post-acute phases of infections, like post Lyme disease? I’m so excited about receiving this new award because it shows that long Covid and ME/CFS are diseases of global significance. It’s validation and acknowledgment for people who have been suffering for decades with ME/CFS, a disease that has been mostly ignored and completely understudied given the amount of suffering it has caused.

I get that people want to move on from the pandemic, but the virus is still out there, people are getting infected, and there’s the possibility of developing long Covid. I’m still wearing masks and following preventive practices as much as possible.

 

[RedFox]

Typical response from Dr. Koroshetz in the article

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.

 

[rvallee]

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:

Thank you for bringing awareness to this research!

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.

 

[Robert 1973]

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.

 

[mango]

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

In this new research study, researchers at Karolinska Institutet and Karolinska University Hospital want to investigate why some people get post-covid and they hope to contribute to the development of new treatments and cures.

[...] Participants will use an app to answer questions about their well-being and quality of life at regular intervals. They are also invited to about four research visits to the hospital and a couple of video meetings with a research nurse. The study lasts 5-6 weeks. Participants measure their own lung function using a device that they take home with them. At the hospital, clinical lung examinations are carried out with samples taken from the airways, as well as blood and urine samples.

 

[JellyBabyKid]

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.

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

 

[RedFox]

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.

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.

And I thought American morning shows were crass.

 

[Trish]

I also sent an email yesterday to the BBC News quiz to complain.

 

[Midnattsol]

TV2 has a good report today of Erika 16 with long covid, no minimizers from NIPH this time. Though the researchers who talk about the consequences of long covid doesn't say anything about how, you know, maybe we should do something to prevent kids from getting ill?

I can't get google translate to work with TV2 webpage, so here it is in Norwegian:
Erika (16) telte dager til hun skulle bli frisk. Så ga hun opp.
Erika counted the days until she would recover. Then she gave up

Her story is similar to mine, though I got ill at 16-17 with ME symptoms not 14 as her. I'm happy to see she has nutritional support.

 

[Midnattsol]

TV2 also had a story on two other kids with long covid, both 13.
De glemte barna: Foreldre fortviler: – Jeg kjenner ikke igjen barnet mitt
The forgotten children: Parents despair: - I don't recognize my child