Long Covid in the media and social media 2023

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Ugh, FFS. After failing millions, the medical industry is literally profiteering off their own failure.
'For “aches and pains, fatigue, shortness of breath, or other symptoms,” the spot continues, “physical therapy is the solution.” It notes that these problems can be ‘the result of a variety of conditions, including long COVID.” It's an ad that will be distributed nationwide.
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Mij said:
Bizarre:
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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.
 
'My daughter's long Covid is not nonsense'
...
Heather, who lives in East Dunbartonshire, was a teacher before becoming a full time carer to her 16-year-old daughter Abigail.

She says she has found it hard to convince medical experts her daughter has long Covid.

"She's been bed-bound for a year now, but was first diagnosed on September 6 2021, that's when our lives changed forever," she said.

"Abi was told it was a psychological problem, she was told several times she could get better if she wanted to. She ended up getting so bad she could no longer talk or barely move. We thought she was going to die."

Heather believes this was caused in part by a lack of knowledge and awareness among healthcare professionals in Scotland.

"I feel people who have been seeking help for long Covid have been dismissed again and again."
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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.

 
Dakota15 said:
Last night, 3 ME patients & a ME/LC expert physician testified at the Health and Human Services Finance and Policy Committee in the MN Senate.

They testified in support of Governor Walz’s Long COVID budget proposal. Their testimony was reinforced by a bevy of supportive written testimonies.

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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').

For some long COVID patients, exercise is bad medicine

When Jessica Lambert was seen at a Chicago long COVID clinic in May 2021 after months of debilitating symptoms, a physical therapist told the formerly active, 37-year-old she was out of shape and started her on an exercise program. Lambert left the sessions exhausted, a fatigue beyond anything she’d ever felt after weightlifting and cycling. The next day she would wake up feeling worse. Forty-eight hours after therapy, her symptoms peaked, with a fever, deep muscle pain, nausea, and a migraine.

“I couldn’t get out of bed, except to move to the couch,” she says. “I’d stay there for the next four or five or six days and start climbing out of it just in time for my next appointment.” After two and a half months of weekly physical therapy sessions and a trip to visit her mother, she spent four months bedridden. Eventually, following a second bout of COVID, she could no longer walk at all.

Lambert didn’t know it, but she was experiencing post-exertional malaise, or PEM, one of the most mysterious and debilitating symptoms of long COVID.
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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
 
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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
 
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Jeremy Nicholson, who heads the Australian National Phenome Centre at Murdoch University in Perth, is watching with trepidation as the new strain emerges.

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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.
 
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