I just heard someone recovering from acute Covid say that they can't exercise for a month to reduce the chances of developing Long Covid. That's not quite right -- though yay for knowing the link between exertion and LC! Here are some guidelines:
-- Until you feel 100%, stop the moment you think, "I'm a little tired." Not five minutes later. If you can, sit or lie down when you get tired. (Being horizontal helps dysautonomia.)

-- This counts not just for exercise, but for all exertion, physical, mental or emotional.
-- Monitor for feeling worse the next day, either increased fatigue or any other symptom. You might be experiencing post-exertional malaise. So if you feel lousy, consider your previous day's activities and think about if you need to scale back.
-- Exertion that doesn't wear you out or bring on other symptoms, either immediately or the next day, is totally fine! Living full lives requires doing stuff, and within our limits, movement is good for us, so go for it (as you safely can).
Early in the pandemic, #MEAction produced this great pacing guide: meaction.net/wp-content/upl…

In collaboration with Patient Led Research, they've now produced this guide for clinicians, with references: meaction.net/wp-content/upl…
Final resource (not about pacing) that may be helpful to those recovering from acute Covid is this list of drugs and supplements that have the best evidence of supporting recovery and reducing the chance of Long Covid, by the amazing @organichemusic: pharmd.substack.com/p/i-have-covid…
Big thanks to @meaction and @patientled.

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More from @julierehmeyer

Nov 28, 2022
Friends, I need your help again. I’m again having convulsions multiple times a day. I’m going to New York to see my neurosurgeon to figure out what the problem is. I can only travel by air ambulance, but my insurance, @BCBSIL, is refusing to cover this essential medical expense.
I’m having convulsions like this many times a day. Warning: these are upsetting to watch, so skip it if you’re feeling fragile. twitter.com/i/web/status/1…
Obviously, there’s no way I can travel by commercial flight. My convulsions have been getting more extreme, including choking, making this an emergency. No local neurosurgeon can treat this. Indeed, they dismiss it as psychosomatic despite clear evidence of physiological problems
Read 6 tweets
Oct 6, 2022
oday is my birthday, a big one. My husband John always finds ways to make my birthday special, but I’ve been especially fragile lately, so even a brunch with a few friends seemed like too much. A thread.
And the last few days have been truly awful, with lots of convulsions, because I’m retethered and no one knows what to do about it.
I woke up this morning feeling blue, wishing I could find a brighter spirit for this day in particular.
I know many chronically ill friends will relate — birthdays can make it hard to push away the broken dreams and uncertainty.
I still have hope for the future and find ways to take joy from the present, but I also grieve the many things I’d imagined for myself that won’t happen.
Read 11 tweets
Jul 23, 2022
Journalist friends: here’s an important story I can’t write. About half of long Covid patients develop ME/CFS. There are only a couple dozen, max, ME/CFS clinicians in the US, and that’s better than in other countries. And most are old. 1/
I know, ME/CFS and Long Covid are often described as “similar,” but the fact is that about half of long Covid patients meet ME/CFS criteria — ie, they have it. 2/
I’m not saying the two illnesses are identical — having developed it from a Covid infection may well mean they have additional issues that are different from patients who developed it in other ways — but ME/CFS docs have experience these Long Covid patients need. 3/
Read 14 tweets
Sep 15, 2021
Studying ME/CFS in isolation from CCI, tethered cord, Lyme, hEDS, MCAS, mold, etc is a massive mistake. They’re deeply interrelated. Eg, before my fusion, my mold reactivity got worse and worse, to the point that no matter how much I washed them, I was reacting to my bedding. 1/
The sx were classic mold sx for me: insomnia, an electric feeling in my limbs, and the next day, bodywide swelling and pain. It was awful. But then I tried sleeping with a cervical collar, and it solved it. 2/
I’m not saying that I was wrong about reacting to mold — I had clear evidence that mold caused these sx. But my neck was intimately involved. 3/
Read 7 tweets
Aug 27, 2021
An update on me: I've continued to have no neurological problems since my second tethered cord release. I also have no post-exertional malaise, though I'm still recovering from surgery and can get tired out fairly easily. I can walk a mile or so with no problem. #mespine 1/
No seizures, no paralysis, no inability to speak, no difficulty breathing.

My mold/MCAS issues have decreased after the three surgeries. I'm back home, after years when I couldn't tolerate sleeping in any buildings. 2/
I don't have significant sleep problems now. Fatigue is only a problem with too much exertion, but that seems to be just part of the healing process, and my tolerance for exertion is steadily increasing. My cognition is working fine. 3/
Read 11 tweets
Jan 29, 2021
1/ Paul Garner seems to be describing some form of brain retraining in claiming that positive thinking cured him of ME. He's extrapolating hugely from his own, n=1 case to make claims that are deeply harmful to the ME community and that are ungrounded in evidence.
2/ The tricky thing, though, is that there's something to brain retraining. Many ME patients have benefited from it. The problem isn't the idea that brain retraining can be a useful tool; the problem is extrapolating that brain retraining solves the entire problem of ME.
3/ Plus, of course, that he made other egregious, hurtful statements about ME patients.

This is a scary thing to talk about, because the issues here are subtle, and Twitter is not a good forum for nuanced conversations. Nevertheless, I think it's important to try.
Read 30 tweets

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