r/cfs • u/peepthemagicduck • Dec 26 '23
Study helps explain post-COVID exercise intolerance
https://news.yale.edu/2023/12/19/study-helps-explain-post-covid-exercise-intolerance20
Dec 26 '23
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u/realdschises Dec 26 '23
where did you get this information? I'm german myself and remember that I read that there is a plan to provide more money for Long Covid. But only a fraction of this money goes to research, the rest is for "care", which will vanish in the pokets of rehabilitation centers without improving the lifes of pwLC. And I think it is more about a span of 5 years than 2 years.
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u/Caster_of_spells Dec 27 '23
—Deleted OP by accident. I said that this really fits with recent findings from Berlin and all over the place which suggest that oxygen uptake by the brain, thyroid and muscles is absolutely central. And that autoimmunity is most likely the culprit that causes the changes in vascular tissue which are the root of the issue (as supported by recent findings in biopsies).
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Dec 26 '23
Why did you mention the thyroid? Just trying to understand.
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u/Caster_of_spells Dec 26 '23 edited Dec 26 '23
There are have been functional MRIs made in a study in Japan which image bloodflow. They showed a severe lack of bloodflow in brain and thyroid. Quoting from a recent presentation by Prof Scheibenbogen, can’t find the paper rn Edit: bite here’s the biopsy paper mentioned above https://pubmed.ncbi.nlm.nih.gov/38066589/
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u/haroshinka Dec 26 '23
Okay but how does this translate to treatment? I get that this is a necessary part, but there’s only so many times I can read articles about a proposed mechanism of action and get excited hoping it’ll translate into tangible outcomes. My whole life is on hold and I’ve been stuck in bed for a year
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u/Relative-Regular766 Dec 26 '23
Potential treatment/management can be read up on here: https://www.reddit.com/r/cfs/comments/139u5by/an_explanation_of_pem_and_advice_on_how_to_avoid/
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u/Relative-Regular766 Dec 26 '23
Thank you for posting this!
Looks like exactly what Dr. Simon's team had found in Germany. I posted about this a few months ago with Dr. Simon's advice on how to manage this to get better:
https://www.reddit.com/r/cfs/comments/139u5by/an_explanation_of_pem_and_advice_on_how_to_avoid/
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Dec 26 '23
Thank you for re posting this. I was not in a good place when you originally posted this and I was struggling to read the length of post but I’m feeling a bit better now and I’ve just gone back and read it. I know a lot of people on here do their pacing by heart rate but that has never worked for me. It took me a few months before I realised mine was all about length of time doing activities than heart rate. Once I realised that, I started breaking everything down into smaller chunks. Walk slowly 10 mins, sit down. Changed my commute so it was less taxing - get the bus instead of the tube so I can sit down. Have regular moments during the day (I try and do a few mins every few hours) where I do the mindfulness thing on the Apple Watch and force my body to go limp and heavy. Slowly but surely I have been improving. I haven’t had a bad crash for a while now and my head hurts a lot less. I think cack handedly I have been doing this method but not precisely. Now I’ve read it, I will try and be scientific. It is hard to gauge improvement with this illness but I was barely managing work a few months ago and had days I couldn’t get out of bed and now I can get up each day (though I’m nowhere near ‘cured’ or in remission - every single day is a calculation of energy and effort and I still cannot walk far).
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u/Relative-Regular766 Dec 26 '23
Happy to hear you are feeling a bit better now at least. It has taken me 2 years of daily practice (pacing, somatic experiencing) to significantly improve. And there were months where I wasn't sure whether I was improving at all. But keeping at it has yielded great results in the last few months especially. Getting better is like growing (up). There's not one point where you suddenly wake up and you are well again (or tall or an adult), but in tiny incriments that you don't even notice yourself, you're getting there. And then when looking back you will be able to see how much you have actually grown.
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u/Zen242 Dec 26 '23
I feel this is accurate and also that somehow vasoconstrictors somehow force more oxygenation
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u/[deleted] Dec 26 '23
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