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I thought I'd post a link in case anyone wants to track the progress of this proposed legislation - https://www.congress.gov/bill/117th-congress/house-bill/2754/text I'm happy the bill was introduced but until this gets passed by both House and Senate, and then signed by the president, it's...

Not sure where to post this link since the article talks about long COVID, POTS and ME/CFS (called CFS in the article). But the main focus seems to be long COVID so I decided to put it here. Feel free to move it to some other thread. Little-known illness turning up in COVID long-haulers...

Yes, this is an interesting study! I think this is the chart showing drop in cerebral blood flow for each group and that it does not appear to be correlated to the %peak VO2 (hence, not related to deconditioning).

High Sodium Intake in Patients With Postural Orthostatic Tachycardia Syndrome: A Practice “Worth Its Salt” Editorial Comment Blair P. Grubb Journal of the American College of Cardiology, 2021 May, 77 (17) 2185–2186 https://www.jacc.org/doi/10.1016/j.jacc.2021.03.229 Short extract: "Studies...

Merged post Link to video (it's about 4 1/2 minutes long): https://www.pbs.org/newshour/show/a-brief-but-spectacular-take-on-advocating-for-people-with-chronic-illnesses There's a comments section but no comments yet (when I last looked). My brain is not up to writing a coherent comment...

Sharing this link for those who are on twitter:

I'm a bit late sharing this, since it was published on March 8, and I keep forgetting to post! But I really enjoyed this essay written by @Michelle : https://www.hippocampusmagazine.com/2021/03/salisbury-steak-day-by-michelle-strausbaugh/

I'm not trying to convince you, and there are definitely advantages to having a separate table to keep the laptop off of your lap! But newer laptops produce a lot less heat. My old MacBook (purchased in 2007, I think?) was a LOT hotter (as well as heavier) than my current one (bought in 2016)...

Assuming you can find a recliner chair that you like (no small feat!) then using a lap desk in the recliner might work for you. It's what I do. I found this photo online years ago that shows an approximation of how I use the laptop. One difference between the photo and my laptop usage is...

Press Telebriefing: Long COVID & ME When: Thursday, March 25, 12 p.m. PT / 3 p.m. ET / 7 p.m. GMT Contact: Adriane Tillman, #MEAction, press@meaction.net More details here: https://www.meaction.net/2021/03/23/press-telebriefing-long-covid-me/ Also posted on twitter:

Actually, advice to avoid things that make the patient worse (included in the famous phrase "first, do no harm") is underrated. Doctors get little to no medical training about ME/CFS. They usually think a little exercise is good for everyone, no matter what diagnosis. And they are often so...

Article by Lindsey Tanner - Survivors Struggle as Scientists Race to Solve COVID Mystery https://www.medscape.com/viewarticle/947450 (you may need to register to read article) Nothing much new here. Mentions the $1 billion allocated for NIH research, lists some working theories why symptoms...

It's "interesting" (not!) that they did not compare ME/cfs to more illnesses that are poorly understood and difficult to treat. Why did they not compare ME/CFS to migraine, endometriosis, chronic Lyme disease, POTS/dysautonomia? These are just a few of the illnesses that I see discussed on...

Thanks for posting! I was going to post a similar comment. For example, here's a review from 2018 of products sold on the goop website:

I'm so sorry your wife is having this problem! It sounds terrible. I want to emphasize that our forum does not allow sharing any medical advice! Especially with something this serious a doctor needs to be consulted directly. Is there some way for your wife to talk with a doctor over the phone...

Adding a link about the relatively new "modified valsalva maneuver" (vs. the old valsalva maneuver) for SVT: https://canadiem.org/modified-valsalva-maneuver-stable-svt/ I guess this has been around at least 5 years but I hadn't heard of it until recently.

I meant to reply to this. One reason I bought the Kardia device is because it was cheaper ($99) than an Apple Watch. And it is easy to use. It does not give continuous monitoring like an Apple Watch but I didn't need that since my episodes last much longer. If my SVT episodes were less than a...

Long Covid Alliance website: https://longcovidalliance.org/ Edit: Just noticed that this link is in the tweet posted above, but here it is for others who may have missed that.

Kardia has come out with newer models (eg, six lead ECG) since I first posted. So sorry to hear that! I feel lucky that when I described this to a doctor when it first happened (I was 11 or 12, 1972 or 1973) the doctor believed me. But he didn't scare me about it, either. I don't remember...

Adding a post to this thread for my own info. I had an SVT episode on Sunday that lasted longer than an hour - maybe 10 or 15 minutes longer? I'm not sure, this is based on my husband tracking the time. I tried all the usual maneuvers (Valsalva, face in cold water) but nothing worked. I have...