Long Covid in the media and social media 2023

Montreal News: Up to 10 per cent of Quebec health-care workers affected with long COVID

 

Sharing from a LC advocate, this billboard in Georgia (unsure of what city). Sharing as it sounds like other advocates are going to attempt to re-create the same or something similar in their respective states too, but will monitor.

Here's the link from Twitter/X that shows the billboard and the steps that the 3 advocates involved took to execute it (which the steps from the outside, look pretty straightforward and simple).

https://twitter.com/user/status/1710402326710673689

 

@Dakota15 - I no longer have a twitter account so I can only see the first post in the thread.

However, I learned that nitter.net is working again, so I used that to look at some other posts in her thread.

Here's the link to the billboard toolkit doc:

Code:

https://drive.google.com/file/d/1qBVFujh8QisaKAiTc8L8ngJfJJwSZXzH/view

And here are two screenshots (default nitter colors, hope this is legible)

 

On Swedish radio this morning:

P1 Morgon: Farligt med långtidscovid
https://sverigesradio.se/artikel/farligt-med-langtidscovid

SR Ekot (nyheter): Fortsatt risk att drabbas av långtidscovid
https://sverigesradio.se/artikel/fortsatt-risk-att-drabbas-av-langtidscovid

Comment by @MittEremltage:

Risk för en storskalig patientsäkerhetskatastrof
https://mitteremitage.wordpress.com/2023/10/09/risk-for-en-storskalig-patientsakerhetskatastrof/

I can confirm this. I've come across so many people with long covid on social media (in Swedish Facebook groups, in particular) who fulfill the CCC ME diagnostic critera but have not been given a ME diagnosis (and therefore also not been educated about PEM) because their doctors, mostly GPs but also specialists, believe that "it wouldn't add anything meaningful", that "it's not necessary", etc.

 

CIDRAP Not 'little adults': Experts say long COVID undercounted, misdiagnosed in kids

quotes:

"I think it's largely because we're trying to apply adult framework to pediatric problems, and as a result, a lot of things are missed," David Putrino, PhD, director of rehabilitation innovation for the Mount Sinai Health System in New York, told CIDRAP News.

"I think what we need are detailed longitudinal studies where we really take the time to characterize what long COVID looks like in a pediatric population," he said. "That has not been done. What has been done is 'let's treat them just like little adults,' which is always a pitfall in pediatrics."

...

Ziyad Al-Aly, MD, clinical epidemiologist at Washington University in St. Louis and chief of research at the VA St. Louis Health Care System, told CIDRAP News that many children likely aren't diagnosed as having long COVID because they don't recognize or have the vocabulary to report their symptoms.

"Kids don't come home and say, 'Mom, I have postexertional malaise, I have brain fog,'" he said. "What happens is that they start doing poorly in school, and parents find out weeks and weeks later."

Hannah Davis, cofounder of the Patient-Led Research Collaborative, a group of long-COVID patients who are also researchers, said recognition can be particularly difficult in younger, preverbal children.

"Generally, long COVID research in children has been lacking compared with long COVID research in adults," she said. "A very sad thing to me is that I, and the other folks with long COVID as adults, we had this whole life where we understood what it meant to be healthy and active and not have these symptoms, and children don't necessarily, so you see it manifest in different forms."

 

Long Covid at the UK Covid Inquiry today

Starts sometime between 10am to 1pm with Prof Chris Brightling and Dr Rachel Evans then after 2pm Ondine Sherwood.

Available on YouTube plus I think on their website

https://covid19.public-inquiry.uk/h...olitical-governance-module-2-public-hearings/

 

"Looking back on it... do you think the NHS or public health authorities could have done more in those early months to respond to the developing picture?"

"So I think with hindsight the answer to that is absolutely yes, that they were left alone with what is a very frightening condition.... health care professionals weren't there to support them and the research wasn't there, and perhaps more could have been done at the start of before the pandemic to prepare for what those post-viral syndromes might have been"

Talking about it in the past while all of this still holds true. Nothing substantial is being done, denial and psychologization, the cause of this failure, are still raging on, in fact have been amplified further. Everywhere it's the same, this doesn't have to do with any particular healthcare system, they all failed, every last one of them is continuing the same failure.

And still zero acknowledgement that it was in fact warned very early on, warnings that have since been validated further, proven to be highly accurate and actionable. In fact the very things we have been demanding for decades are always, without fail, what ends up being recommended, even if it's not acted on.

 

I listened off and on as I could and felt as if it was largely that ME had never existed. There were references to CFS, Chronic fatigue. The criteria for CFS was said to be the CDC one. PEM was mentioned but with fatigue as the primary mention.

To be fair none of these people were pretending to be ME experts. I think that this day could have benefited from having some one who knew ME history there.

One new term to me was along the line of "hibernating" study. This refers to a study that can be picked up at each new pandemic. I need to listen to the whole thing again and see what I missed or have wrong.

p.s. I noticed that there would be a transcript produced for the Inquiry and posted to their website "soon".

 

https://covid19.public-inquiry.uk/w...26/C-19-Inquiry-13-October-Module-2-Day-9.pdf

Starts round about page 81

 

Mental Health Is a Universal Right
https://time.com/collection/time100-voices/6323214/mental-health-care-delivery-who-chile/

It's BS like cowardly putting Long Covid as a mental health issue that makes all the messaging around mental health completely pointless. They can't even tell the difference, don't even have basic understanding of mental health, and medicine does not treat mental health seriously, including by not caring about miscategorizing entire illnesses, in fact by insisting against all evidence that they prefer it this way.

This is written by the director-general of the WHO and the president of Chile.

Basic health care isn't even a right yet. Not even close. Mental health care is barely where medicine was a century ago, it's not realistic to pretend that this is anywhere near realistic. This messaging makes about as much sense as "a mansion for everyone", in the 4th century, when the ability to build mansions barely existed at all.

Yes, it can be said that chronic illness causes psychological suffering. But none of this can be addressed while medicine is stuck with psychosomatic ideology, unable to make any progress to address the cause and mislabeling it as mental health when it isn't that.

 

In response to the above article.

We need better care for long covid and ME/CFS

"As a patient with severe long covid and myalgic encephalomyelitis (ME), I was pleased to see Dean’s article about a long covid clinic.1 I went from working on-call as a consultant to being unable to stand or feed myself with long covid. I remain severely affected a year later and now face losing my job. Altmann and colleagues estimate that one in 10 people "

Paywalled, https://www.bmj.com/content/383/bmj.p2372

 

Long covid: Researchers “extremely angry” at Boris Johnson’s “bollocks” comment

"Clinicians who led research on long covid from early on in the pandemic and who met government members to discuss the condition have expressed sadness and anger after messages emerged in which the then prime minister, Boris Johnson, described the condition as “bollocks.”

During a UK Covid-19 Inquiry session on long covid on 13 October researchers were shown a memo provided to Johnson in October 2020 that discussed a report on long covid and its symptoms.1 On it he had written: “Bollocks. This is Gulf War syndrome stuff.” In February 2021 Johnson wrote in a WhatsApp message, “Do we really believe in long covid? . . . I bet it’s complete Gulf War syndrome stuff.”

Chris Brightling and Rachael Evans, two of the investigators leading the Post-Hospitalisation Covid (Phosp-Covid) study,2 a national study looking at the long term effects of covid-19 on hospital patients, said they were “shocked” and “angry” by the messages and raised concerns over how much Johnson’s views had influenced the government’s decision making."

https://www.bmj.com/content/383/bmj.p2406

 

Dominic Meagher on BlueSky (Deputy Director & Chief Economist, John Curtain Research Centre)

Responding to news that Australian CMO is removing Covid as a communicable disease of national significance.

(From the @rvallee school )

 

Good news though, with regard to the commentary, I don’t think it’s true that governments provide all the necessary money to make speedy progress on all illnesses. Privately raised money is important.

 

I hope the way that the biomedical LC-researchers have positioned themselves now ensures that we won't have a repeat of the ME Lines-scandal earlier this year.

The consortia/research teams are already there, you only have to send them the funds. Our government is supposed to make 32 million available for research into LC.

 

We could probably raise 5-10x as much money easily if medicine were to simply acknowledge that it's a serious issue, whether we are talking about LC or ME. Private fund-raising requires legitimacy. All diseases that manage this have significant recognition, have many MDs on board and, especially, no detractors.

It's actually impressive how much has been achieved with medicine mostly working against us. But this is the main blocker.