BBC Article: Long Covid: 'I have to choose between walking and talking'

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Currently on sick pay and previously furloughed, she is desperate to work again.

"My whole life has been pulled out from underneath me like so many others with long Covid. We've had a big identity crisis," she says.

"I need to reinvent myself. I can't even lift my left arm up, let alone be a yoga teacher, which is heartbreaking."

For nine months, doctors said anxiety was the cause of her symptoms, which included a tight chest, heart pain, breathlessness, fatigue and palpitations.

She knew they were wrong and developed her own symptom tracker which helped her work out that her triggers were bending over, walking and talking, with a delayed impact in her lungs.

Her health only began to improve when she started treatment at a clinic for 130 patients with severe long Covid, at the Royal Brompton Hospital, in London.
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Doctors found multiple health issues. A gas transfer test showed oxygen levels in her lungs to be 53%, the same as a lung disease patient, and she was diagnosed with post-Covid heart inflammation, which they told her they had not seen before.

They also found small blood clots on her lungs, which only showed up on a specialised scan called a ventilation-perfusion scan.

Since starting blood-thinning medication, the clots have gone but she still has abnormal blood and oxygen flow to her lungs.

"An anti-inflammatory drug called colchicine significantly changed my recovery but unfortunately I relapsed again. Now I can walk slowly for five minutes once a week if I'm lucky but I get chest pain afterwards. I have to choose between using my voice and moving my body. I can't do both in a day.

"Doctors don't know why I have good overall levels of oxygen in my body but it's not getting to my lungs, which could be an issue with my blood vessels, but my scans show they are normal - they've never seen this before."
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https://www.bbc.co.uk/news/uk-england-beds-bucks-herts-59584146
 
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As someone with LC symptoms I find this absolutely terrifying.

Also yeah how awful to be told it’s anxiety when actually it’s a repeated pattern of symptoms based on biological processes.

We can all relate but in decades I have never had this sort of investigation nor have most of us so we won’t know where the function of our cells are impacted.
 
For nine months, doctors said anxiety was the cause of her symptoms, which included a tight chest, heart pain, breathlessness, fatigue and palpitations.
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Meanwhile, Emily said a GP told her the symptoms were down to anxiety and she should "go home and sort myself out".
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Both have been discharged from a long Covid clinic, having been told they were too ill to start rehabilitation.
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Good to see Long Haulers getting the sort of high quality medical advice that most of us have experienced over many decades. :banghead:
 
Moved post

Andy said:
Long Covid: 'I have to choose between walking and talking', https://www.bbc.co.uk/news/uk-england-beds-bucks-herts-59584146
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Completely absurd that getting 2 years into this, there is still a near complete taboo in most news media reports about how this is an old problem that medicine has explicitly denied for decades. It's damning to put it there how there is no treatment for this and no one knows how to treat it, when there are in fact bold claims of exactly this being "common knowledge", hence all the claims about the clinics and how general practice can handle it. And no shortage of physicians who would say exactly this, sometimes even both, not even understanding that they are talking about the same thing.

It's framed as an entirely new thing that never hinted at existing before 2020. It's been almost 2 years. And sometimes quotes about this are even edited out, I've seen a few lately about interviews where they did talk about it and it didn't make it into the program.

How is it a thing that in 2021, medicine of all things, has clear taboos over topics in the same way as an organized religion can have, literally "you do not talk about this". Absolutely ridiculous. I see it almost every time how some people hope this will help us but it's explicitly not happening, there are efforts preventing this from being acknowledged at all.

A problem that can't be acknowledged explicitly cannot be solved, it's the first damn step in solving every problem.
 
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rvallee said:
How is it a thing that in 2021, medicine of all things, has clear taboos over topics in the same way as an organized religion can have, literally "you do not talk about this"
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Its been reported that for H. pylori and gastric ulcers there was a ban for about ten years on discussing it at pharmaceutically funded medical conferences. It was popular discussions at news and other sites that changed the debate. People wanted a cure, not a treatment.
 
alex3619 said:
Its been reported that for H. pylori and gastric ulcers there was a ban for about ten years on discussing it at pharmaceutically funded medical conferences. It was popular discussions at news and other sites that changed the debate. People wanted a cure, not a treatment.
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Heh, funny thing about that. I recently came across something about what happened with the CDC and NIH around the time they created CFS and I saw a Fauci quote saying how there's nothing wrong telling us that an illness is psychological and cited peptic ulcers as an example where it is.

This was before Marshall showed it was H. pylori, of course. It was clearly a very popular belief at the time. No one really seemed to have acknowledged that anything was wrong with that. So on and on it went. What could go wrong with no accountability whatsoever? Besides everything...
 
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