News about Long Covid including its relationship to ME/CFS 2020 to 2021

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I'm reading through physician "Muir Gray" twitter, he's not understanding the differences between deconditioning and post-viral fatigue syndromes. He is advising various forms of exercise on twitter. Perhaps I'm misinterpreting him, but he comes across as a bit flippant.
 
Uppsala University with article about prof. Jonas Bergquist who is going to investigate samples from Covid-19 patients and believes this may provide important information for research into ME. He also talks a bit about how the pandemic has affected ME patients

- Today, in ME patients, we are already looking for neuroinflammation markers and nerve cell injury markers, so we try to see if these are also found in covid patients' spinal fluid. This could show a connection and provide information about which patients are at risk of long-term and even chronic problems. If so, who are these biomarkers and what other organs are affected at the same time? Can we see patterns in which different infections affecting the nervous system behave similarly? Now we need to follow up and see what it looks like for these particular patients who have ended up in intensive care and who have neurological disorders. How will it go for them when they return home and recover from their infectious disease?

Covid-19 kan ge viktig information till ME-forskningen
google translation: Covid-19 can provide important information to ME research
 
I just keep seeing the same posts, the same stories, the same patterns from different people. All understand the same thing. All completely debunk either of the PTSD or deconditioning so completely. Or even basic motivation. All stories of people who either jump to exercise and regret it or people who thought they were out of it and resumed it only to crash almost immediately. Many examples from today, here's a good one.



I posted last week about how I thought at the time I was almost fully recovered. I had gone on a walk 11 days in a row, was able to get pretty much all my work done during the day, and had moved on mentally.

Then this past Friday, entering week 13.. I crashed.. hard. I spent the majority of the weekend in bed, extremely frustrated about the whole thing. Honestly was probably the toughest few days of my life mentally.
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For me, and seemingly for a lot of you all as well, our definition of 'success' is getting back to exercising. I'm trying to re-frame that to something more attainable at least for the next month or so.
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There is what the patients are experiencing and reporting. It completely and thorough debunks even the basis of CBT or GET as superfluous "ghost in the machine" nonsense. It is the same the ME community has been experiencing and reporting for decades. And there is what the medical professionals believe and advise. The two have nothing in common with almost zero overlap. What a massive failure.
 
5 of my extended family who had Covid back in March, 3 are still having problems three months on. One, female, mid 50's was hospitalised for a week or so and on oxygen but is now a lot better, able to go walking daily, but still a bit fatigued, the second, female, early 40's still struggling with PVFS symptoms, the third, male, about 30 seems to be suffering the worst still, feeling very unwell and getting very exhausted. None had any underlying health problems. At least they are aware of the MEA advice, so not pushing themselves.
 
One major factor moving forward will be whether there will be discrimination for the COVID-19 cohort, using perhaps antibody testing. Doesn't look promising so far, most seem to be negative and at some point the window of detection will be long gone by the time a reliable test is available. One thing that was noted in the Body Politic report is that there were no notable differences between those who had a confirmed test and those who didn't.

Most of the replies here say they tested negative. There's even a comment from a scientist saying how important this would be precisely because if that were the case there would likely be a segregation that would avoid having to acknowledge the broader problem of there being multiple such syndromes while insisting that there could be no such thing as a generic post-viral syndrome. Weird how cognitive dissonance eventually meets a wall.

 
Oh, and one other thing I keep saying is downplaying of symptoms. A lot of it. People who say they think they're basically recovered but when responding to questions they still have many symptoms and can barely do much more than be super sedentary. They simply lowered their expectations, literally the opposite of stupid stuff like internal focus and interoceptive affordances and other tripe.

All the nonsense about symptom focusing being the cause is such nonsense. This isn't how humans behave at all, most people ignore and push through health problems for way too long, in fact. Literally the opposite of the myth believed by most in medicine. People just want to live a normal life. Nobody likes being sick or being around sick people. But them juicy secondary benefits, right?
 
When I worked at a clinic, I met many healthy seniors (80-90+years) who attributed their long life w/o severe illnesses to exercising and nutrition, or sharing their 'secret' of eating a can of sardines once a week.
I used to believe this until . . .
 
rvallee said:
Oh, and one other thing I keep saying is downplaying of symptoms. A lot of it. People who say they think they're basically recovered but when responding to questions they still have many symptoms and can barely do much more than be super sedentary. They simply lowered their expectations, literally the opposite of stupid stuff like internal focus and interoceptive affordances and other tripe.

All the nonsense about symptom focusing being the cause is such nonsense. This isn't how humans behave at all, most people ignore and push through health problems for way too long, in fact. Literally the opposite of the myth believed by most in medicine. People just want to live a normal life. Nobody likes being sick or being around sick people. But them juicy secondary benefits, right?
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Gotta get those sweet sweet secondary gains
 
New project could help healthcare providers plan for coronavirus consequences
Reviewed by James Ives, M.Psych. (Editor)Jun 15 2020
Could COVID-19 harm patients after the infection has gone? Members of the EUROMENE COST Action are adapting their work on chronic fatigue syndrome to coronavirus patients.
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In particular, researchers want to find out whether COVID-19 infection worsens fatigue in existing ME/CFS patients and whether other survivors of the virus might go on to develop the syndrome.
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https://www.news-medical.net/news/2...viders-plan-for-coronavirus-consequences.aspx
 
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From @Dolphin 's link in the previous post...

'Tired all the time' syndrome, more formally known as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), still puzzles scientists and doctors.
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I didn't realise that TATT - Tired All The Time - was considered by the medical profession to be identical to ME or CFS. I'm glad I found out. You never know when this kind of info can be helpful!
 
Arnie Pye said:
From @Dolphin 's link in the previous post...



I didn't realise that TATT - Tired All The Time - was considered by the medical profession to be identical to ME or CFS. I'm glad I found out. You never know when this kind of info can be helpful!
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To some doctors yes. But I know mine were putting TATT on my records long before we started talking about ME/CFS.
 
Lololol so I was just talking to my mum about this...

Mum: "well at least with all these people getting it after covid, the medical profession won't be able to say that it's psychological"

Me: oh my sweet summer child...

:rofl::rofl::rofl:
 
rvallee said:
I just keep seeing the same posts, the same stories, the same patterns from different people. All understand the same thing. All completely debunk either of the PTSD or deconditioning so completely. Or even basic motivation. All stories of people who either jump to exercise and regret it or people who thought they were out of it and resumed it only to crash almost immediately. Many examples from today, here's a good one.
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What has really struck me is that they are using the same language that we in the ME/CFS community use. For example, they commonly use terms like "crashing" and "flare up".

It's obvious that most of them have had no contact with the ME/CFS community before and yet they're describing their symptoms and experience using exactly the same words many of us have been using for decades.

ETA: many of them are using "brain fog" too.
 
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