Long Covid in the media and social media 2023

https://twitter.com/user/status/1651252302471217152

 

Ugh, FFS. After failing millions, the medical industry is literally profiteering off their own failure.

https://twitter.com/user/status/1651177842812526593

 

Diseases that disable millions reduced to “aches and pains.”

 

If only it were aches and pains. Not a clue.

 

Moderators, please move this if it belongs somewhere else, or let me know if it's already been cited/posted (I've been away too long): https://www.thenation.com/article/society/long-covid-disability-policy/

There may be a paywall; if so, I can try a different way of posting it.

 

That's not an admission of defeat, just that the first LC treatment won't be a cure. Never is the initial version of a technology perfect and medicine is no exception. Apparently they also asked what "toxicities" patients would be able to tolerate. My answers to those questions could be:
Symptoms: PEM by far
Toxicities: A drug that cures PEM but leaves me immunocompromised, might give me cancer, slowly rots all my organs, or will kill me in a few years' time are all fine to me.

Additions:
They also ask:
Would you say long Covid today is well managed?
Who thought this was a good question to ask?! Yes, and I'm a unicorn that poops rainbow ice cream.
What would you consider a successful treatment outcome?
Being able to take care of myself and have a few hobbies I enjoy would be the first level of success.

 

I tweeted about this, in reply to a Long Covid Kids Scotland tweet. I'm annoyed that so much history is being erased. You only have to read the article to understand that these two kids (and possibly the adult) almost certainly have ME. Not mentioned once, of course.

https://twitter.com/user/status/1651500685404389378

 

Yay for my home (original) state of MN. They don't get everything right, but I was surprised to hear they even have an ME/CFS clinic.

 

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/

 

From National Geographic, this is a decent article about PEM with a good section on ME/CFS (notwithstanding the usual nonsense about 'type A personalities').

 

Merged thread

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

Phenomics, of which Professor Nicholson is considered among the top global leaders in the field, is the study of how the environment and a person’s lifestyle interact with their genes to influence their health and risk of disease.

For two and a half year’s Professor Nicholson has been on a rollercoaster of fatigue so chronic he can’t get out of bed due to bouts of illness. While the liver dysfunction finally corrected itself after about five months, the diabetes and atherosclerosis – which carries with it the risk of heart disease – will be with him for the rest of his life.

“That is deeply unfunny,” he said.

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

 

Merged thread

EXCLUSIVE: Scientists launch manhunt for 'longest ever' Covid patient in Ohio who has been infected for two YEARS — as they warn patient's virus is so mutated it could spark 'concerning' outbreak.

An infected person in Ohio has been carrying a 'cryptic' strain of Covid years

Researchers have found rare strain in Columbus and Washington Court House

READ MORE: One-fifth of 'long Covid' sufferers have not returned to work
Are you or someone you know the Ohio person carrying Covid? Email: Mansur.Shaheen@mailonline.com

https://www.dailymail.co.uk/health/...tml?ns_mchannel=rss&ns_campaign=1490&ito=1490

 

So now we have:

Mild Covid
Medium Covid
Long Covid
Longest Ever Covid

So after the 2 year mark it will be referred to as . . .

 

Your link sounds interesting but is only available to subscribers. There may be ways around this but my usual solutions for this aren't working.

 

Jeremy Nicholson, who heads the Australian National Phenome Centre at Murdoch University in Perth, is watching with trepidation as the new strain emerges.


Professor Jeremy Nicholson has a unique insight into long COVID. Trevor Collens

“Complacency is COVID’s friend,” said Professor Nicholson, who has a profound, and personal, understanding of COVID and the damage it can wreak on the health of people when it turns into long-COVID.

Professor Nicholson is not only one of the world’s foremost experts in understanding the mechanics of the virus and how it interacts with individuals, he also observed the impact of long-COVID first-hand.

As one of the first people to contract the disease in Australia, having picked it up at a conference in Italy in February 2020, Professor Nicholson is also one of the first to develop long COVID.

[...]
A parliamentary report into long COVID released this week found that there is no nationally agreed and consistent definition of long COVID. It is little understood and often misdiagnosed by the medical fraternity

[...]

New research from the US has shown that even people with a mild case of the virus can still have an increased cardiovascular, dementia and diabetes risk 12 months later.

Even more concerning is that a study from Cambridge University published in January found that an analysis of blood chemistry can identify whether people are likely to be on a trajectory to long COVID, and even predict whether they will die from the disease.

“It’s scary because that is all set even before we get the disease. We can predict if someone is going to die, but we can’t do anything about it. So thinking about how we can intervene with those patients very early to change their life-course trajectory is our current big challenge,” Professor Nicholson said.