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Summary version of my previous post: I never feel sleepy during the day. I have no trouble falling asleep at night. I wake up A LOT during the night. Resting always makes my sleep better (eventually, it may take days). Exertion always makes my sleep worse.

I have never felt "sleepy" tired (somnolescence? aka, somnolence?), not even at the beginning of my illness. For the first 4-5(?) years of my illness, I did not seem to have many sleep problems. I did tend to sleep a lot more hours than usual (maybe 10-12 hours instead of my usual 7-8) but it...

Sadly, one of the people who claimed that COVID-19 numbers are inaccurate is a US Senator, Iowa senator Joni Ernst: https://www.nytimes.com/2020/09/02/us/politics/joni-ernst-coronavirus.html The article says that she has "walked back" her comments since then. But to have said this in the...

A PDF file with slides from the presentation can be found here: https://solvecfs.org/wp-content/uploads/2020/08/Post-COVID%20ME-to%20Solve.pdf

Thanks for posting, @Milo ! I found a link on their website with the same announcement for those who have trouble reading text from image files.

In addition to re-tweeting others who have mentioned this (mostly @SolveMECFS on twitter), I have written two email messages directly to my own representative since I first heard about this in June. I've also tagged her in four separate tweets over that time. I'm listing these ideas in case...

Another article, this time from NPR (National Public Radio), discussing viral dose and viral load (I actually thought those meant the same thing - oops!) and how wearing a mask affects those. The study using hamsters separated by surgical masks (it's not like they could train the hamsters to...

I have a vague memory that one factor (depending on type of Orthostatic Intolerance, there are probably a lot of factors) is getting somewhat dehydrated overnight - more water in bladder, less water in blood vessels.

Thanks! I went to the Bateman Horne Center YouTube channel and found the video "What is Orthostatic Intolerance? Part 2" so I thought I'd post it here: (I have not yet watched either video, probably will be a while before I do)

I had a lot of tingling sensations in the extremities the first 5-6 (?) years. I remember sometimes it felt like pins & needles, sometimes felt kind of like hot/cold at the same time, like Ben-Gay or Icy Hot had been rubbed on my hands and feet (and up a bit, like long gloves and socks). It's...

RE: whether a larger dose of virus vs. a single virus particle makes any difference There was an article in the LA Times recently with the headline, "Wearing masks could help you avoid major illness even if you get coronavirus, experts say" I have no idea whether this theory makes sense! I'm...

I agree! I was commiserating with you and all the ME patients who have more questions than answers (largely because so few research studies have been done). I've been sick so long, and things are so hard to figure out, that your comment "what is it that made the difference" resonated with me...

That's the eternal question for folks with ME isn't it? And for a lot of other folks with chronic illness, too, but with ME it's multiplied by 1000000000000000000000000...

Yes. It's not fun! And the added cognitive load is often overlooked. I'm lucky that my husband really gets that resting/pacing is work for me. Of course, it's annoying as hell when I would really rather be doing something (anything) than lying here in the recliner. When I'm in the middle of a...

Oh, I forgot to mention one thing. I read that supraventricular tachycardia is on the list of conditions that puts a person at higher risk of complications if they contract COVID-19. I wasn't actually looking for that information. I stumbled across it when I was reading this article (in the...

A short update. It may not be interesting to anyone else, and it's not related to M.E. at all, but thought I'd share anyway. Last night I had yet another SVT episode (supraventricular tachycardia). I managed to record something interesting so I'm putting it here. To recap: my SVT is annoying...

I hope I did not overstate the effect of having a full stomach vs. so many of my other symptoms that are disabling! I have found this one small pattern about eating. It's more difficult for me to do things on a full stomach vs. an empty stomach. But it's only one of MANY variables. Eating/not...

I happened to stumble across this POTS research today: Splanchnic Venous Compression Enhances the Effects of ß‐Blockade in the Treatment of Postural Tachycardia Syndrome Emily C. Smith, André Diedrich, Satish R. Raj, Alfredo Gamboa, Cyndya A. Shibao, Bonnie K. Black, Amanda Peltier, Sachin Y...

I hope it's not pedantic to say that it is not "fatigue" per se that gets worse after I eat a meal. That is, I don't get sleepy or any kind of tired feeling. I do have more trouble with standing still, as well as with any type of exertion, after eating. I have read (eg, in this document -...

Yes. I'm also worried about India.:( Edited to add today's graph from https://coronavirus.jhu.edu/data/new-cases