It'sME(Jaime) Profile picture
Feb 25, 2023 24 tweets 6 min read Read on X
Many may be unaware that their #LongCOVID presentation would dx with infection-associated chronic illnesses like #MECFS, #POTS, #MCAS, et al.

I promised I'd put together a thread on #POTS after the thread about management advice for the condition.

So let's get started! (1/)
First, let's discuss what #POTS may feel like.

POTS is postural orthostatic tachycardia syndrome. It means that when you change position from lying down to sitting up, or sitting to standing, your heart may pound, you'll feel dizzy &/or nauseated, and you can even pass out! (2/)
#POTS is: "A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 BPM in adults, or at least 40 BPM in adolescents, measured during the first 10 minutes of standing." (JHU)

Note: delayed responses can happen, too! (3/)
POTS is autonomic, so it affects many body systems.

Most with #POTS report post-infectious onset, just like #MECFS. Before infection, you may have had mild symptoms, too-- but after infection they may have become far more severe. (4/) #LongCOVID

ncbi.nlm.nih.gov/pmc/articles/P…
Certain autoantibodies have been associated with #POTS, showing something is off in the immune system as well as the nervous system. (5/) #LongCOVID pubmed.ncbi.nlm.nih.gov/28738696/
A GP can diagnose #POTS via a 'NASA lean test'-- it's pretty straightforward. (6/) #LongCOVID batemanhornecenter.org/wp-content/upl…
However, at a specialist clinic, they might perform a tilt table test (TTT) or full autonomic panel to diagnose #POTS. Here's a good quick rundown of tests that are typically part of an autonomic panel: (7/)
medlineplus.gov/lab-tests/auto…
OK, you get diagnosed! Now what?

There are many self-management tricks and tips.

What follows is some of what I've learned as someone with a diagnosis of autonomic #POTS.

None of this is intended to be medical advice, and remember I'm not a clinician, myself. (8/)
(1) COMPRESSION

People with #POTS have blood pooling when they stand. I have mediumweight compression socks from Sockwell. This can help prevent blood pooling.

Others use abdominal compression, too. (9/)
(2) WATER & ELECTROLYTES

My doc recommended I fill two, 1-L bottles of water before bed, adding salt or electrolytes, & "make sure they disappear" by the next day (on top of whatever else I was eating/drinking).

I've used Nuun brand & Trace Minerals PowerPak electrolytes. (10/)
(3) RECUMBENT EXERCISE

Exercising while being upright can be challenging in #POTS. Recumbent bikes are good, as is recumbent yoga:

Be sure you don't have #MECFS + #POTS before you try cardiovascular exercise! More here: (11/)dysautonomiainternational.org/page.php?ID=209
meaction.net/resource/pacin…
(4) DIET

(a) Eating more salt
People do talk about this not being the case for adrenergic #POTS, but I have that dx, & sometimes I still see benefit from salt.

Electrolyte powders in water are also helpful for similar reasons: blood volume boost.
. (12/)ncbi.nlm.nih.gov/pmc/articles/P…
4) DIET

(b) Avoiding carb-only meals
Big shifts in blood sugar affect BP through insulin-dependent AND insulin-independent pathways. Good fats + protein + carbs is fine for many, but an only-carb meal may make a POTSie feel worse. (13/)
5) DIET

(c) Eating smaller meals
Even in healthy people, eating a meal redirects blood flow to the stomach and gut; and eating a heavy meal moreso.

Since folks with #POTS have blood flow issues in the first place, this can worsen symptoms. Four small meals > 2-3 big ones. (14/)
6) MEDS

Meds can make a big difference! If your GP is certain "there is nothing to do" for #POTS here are some of Cleveland Clinic's suggestions. Very mainstream but they have all the big players: fludrocortisone, pyridostigmine, beta-blockers, etc. (15/) my.clevelandclinic.org/health/disease…
Meds are very individual. Some people POTS swear by fludrocortisone and others have poor responses, for example.

Important to acknowledge that good management makes a big difference even in cases where it is challenging to access meds.

Hope this is helpful! #POTS #LongCOVID
The thread that prompted the ask ⬆️ -- lots of good stuff in the comments too.
ASSISTIVE DEVICES--

(Of course!)

-Mobility aids (wheelchairs, walkers, walking sticks)
-Standing in line can be very hard for #POTS folk! Rocking back and forth and clenching the backs of your legs can help! There are also walking sticks that unfold to chairs. <3 Image
One thing we didn't mention: heat is vasodilating. So #POTS folks may get dizzier in the shower, for example, especially as they're standing so long. Shower chairs help! I also make sure I have an ice-cold drink by my bed as part of my pre-shower routine.
For menstruating women, the first set of posts on my "hormones and infection-associated disease" thread has some direct correlations to POTS:
This from the BMJ a day or two after my first thread with a lot of similar advice: but note no mention of excluding ME/CFS or PEM and no mention of other common comorbidities. Be aware of the omission!
Not to mention yesterday's @washingtonpost article about post-COVID #POTS:

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More from @exceedhergrasp1

Jul 6
The cardinal symptom of #MECFS is #PEM, a flare of symptoms after exertion, often with a characteristic, 24-hr delay. To measure PEM, researchers perform a two-day CPET: a pair of cardiopulmonary exercise tests one day apart. (1/5) 🧵

tinyurl.com/53xt4xvs
2-day CPETs are expensive, so larger studies are tough. This study is the largest to date.

#MECFS folks didn't replicate day one performance, w/significant declines at peak exertion in work, exercise time, Ve, VO2, VCO2, VT, HR, O2pulse, DBP, & RPP. (2/)
tinyurl.com/53xt4xvs
Results were similar in pairs of healthies vs #MECFS matched for aerobic capacity, indicating that fitness level does not predispose to exertion intolerance in #MECFS.

IOW, #pwME don't have an aberrant response to exertion b/c of deconditioning. (4/5)

tinyurl.com/53xt4xvs
Read 4 tweets
Jun 6
According to this article, xylitol increased the risk of cardiovascular events. On further examination, they found that xylitol acted on platelets, increasing clotting. #LongCOVID #MECFS (1/4)

time.com/6985904/xylito…
They found this in mice, at first.

Then, researchers gave ppl a drink w/xylitol & another w/glucose. Xylitol levels jumped 1000x in the plasma, correlating to increased clotting factors-- but not after the glucose drink. (2/4)

#LongCOVID #MECFS
time.com/6985904/xylito…
This is potentially of interest because of the research on dysregulated clotting in #LongCOVID & #MECFS, including microclots.

An FYI! (3/4)

time.com/6985904/xylito…
Read 4 tweets
Jun 1
Tonight, we parody a great, recurring sketch from @LastWeekTonight: How is This Still a Thing?

@LastWeekTonight
@TheDailyShow
#TheGreatestMEdicalScandal #JohnVsJonVsME A cream background with a black vertical line dividing it in half.  On the left-hand side, it says "the Lightning Process" in small, Garamond font with a little image of blue ball lightning.  On the right-hand side is block lettering which reads, "How is this still a thing?"
First, you should know that this is NOT a real segment! We are not trying to claim that @iamjohnoliver.

The previous image is @StarTrek's 'Crystalline Entity' meets 'Graphic Design is our Passion', and we feel this should be proof enough.

Got it? Good.
@LastWeekTonight A still from Last Week Tonight in which John Oliver appears to be directly telling us that this is not a segment from him, nor from Last Week Tonight With John Oliver.  He is a white man wearing glasses and a suit and tie, extending a hand abjuring us Not to Believe.  On the screen behind him is a generic stock photo image of a man holding a yellow post-it that says "Fake or Real?"
Myalgic encephalomyelitis, sometimes called #MECFS, is an infection-associated illness. That means it is often triggered by an infection, often a viral one. About half of those with #LongCOVID meet the diagnostic criteria for #MECFS, so it's a HUGE problem. #JohnVsJonVsME John Oliver, still a white man wearing spectacles and a suit, sits to the right of a screen within which we, through the magic of Canva, have placed the symptoms graphic for ME/CFS from the Concise Clinical Review on ME/CFS in Mayo Clinic Proceedings. Over the graphic is written in black lettering, 'myalgic encephalomyelitis'.
Read 18 tweets
May 10
(I) PRESS:

@TIME

A few years ago, Jaime Seltzer was helping coordinate research projects, grant applications & funding for a Stanford research group studying a condition called myalgic encephalomyelitis/chronic fatigue syndrome (#MECFS). (1/)
#LongCOVIDtime.com/5897992/long-h…
“What is it going to take for researchers to take ME seriously?” she and her colleagues often wondered aloud.

The morbid answer, they hypothesized, was a pandemic. (2/) #MECFS #LongCOVID
time.com/5897992/long-h…
This article was produced on October 16, 2020 by @Jamie_Ducharme @TIME. Ducharme was an excellent, thorough interviewer and seemed to intimately understand the most important aspects to revisit in depth. (3/) #MECFS #LongCOVID

#LongCOVIDtime.com/5897992/long-h…
Read 38 tweets
Apr 6
Let's say you have #MECFS or #LongCOVID and you think you might be ready to work again.

But only if you received the right kind of accommodations at your workplace... how would your employer (or you, even!) know what to suggest?

A few years back, our own Ben Hsuborger (1/5)
...worked with a work accommodations website called AskJan to revise and update their page on #MECFS, and he did an incredible job. The best aspect is that, when you scroll down, you can see accommodations by symptom. (2/4) #DisabilityTwitter (2/5)

askjan.org/disabilities/C…
Issues with concentration, memory, and executive function are central to #MECFS presentation. You can find AskJan's list of accommodations for #ADHD and executive functioning here (note: two links to follow). (3/5)



askjan.org/disabilities/A…
askjan.org/articles/Execu…
Read 6 tweets
Oct 31, 2023
Excellent news! #CDC has a new page on infection-associated chronic sequelae. Of particular import: these chronic symptoms linger "even after appropriate treatment". 🧵 (1/4)
Some highlights:
✨Lists pathogens known to lead to chronic issues, inc. COVID, Borrelia, EBV
✨Talks about how some symptoms are specific to pathogen, others are common to many infection-associated chronic illnesses
✨Lampshades #MECFS multiple times in the article (2/4)
Highlights, cnt'd
✨Common-language etiology section that outlines a very complex picture very clearly
✨Mentions that everyday testing may not show anything but this does not mean symptoms aren't impairing
✨Lists their current projects (could be more/better, but still) (3/4)
Read 5 tweets

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