@ricardoharvin

"She offered Christopher the simplest of solutions: prescription compression stockings, which she called “garments” to soothe his masculine pride ..."

Compression stockings are similar in principle to the G suits fighter pilots wear to prevent G-force Loss of Consciousness (G-LOC) - if that makes anyone feel better about it.

Another thing that can prevent blacking out is to clench all lower body muscles. It helps to have big glutes and quads. That's what I used to do when I had dizziness on standing problems.

#POTS #dysautonomia

That Stat News article didn't mention ME/CFS.

But I just noticed that one of the links in the first paragraph (on the word debilitating) goes to an article from January about a woman with Long Covid who also has an ME/CFS diagnosis:

‘I want people to see us’: A writer gives voice to long Covid and mothering from bed

https://www.statnews.com/2023/01/09/living-with-long-covid-writer-kristin-houlihan/

#LongCovid #MEcfs #POTS #Dysautonomia #PEM

Radio Atlantic: Fatigue Can Wreck You - The Atlantic

"As a medical term, fatigue seems suspiciously unspecific. Is it just the common tired we all feel, but extra? Is it more like a bad, long day? A state of mind? This lack of clarity made me assume that “fatigue” was a medical mystery and thus impossible for doctors to diagnose or treat."

1/2

#spoonie #PEM #fatigue #LongCovid #ME_CFS #Dysautonomia

https://www.theatlantic.com/podcasts/archive/2023/08/fatigue-can-wreck-you/675030/

@Linza I have a POTS diagnosis, too.

My first tilt table test did not show POTS - my heart rate did not rise enough. But I got symptoms after 4-5 minutes, passed out after 20 minutes.

I got a diagnosis of NMH, neurally mediated hypotension.

Years later my cardiologist did measurements and POTS was added. I also have ME/CFS diagnosis.

Two helpful videos on Orthostatic Intolerance in ME/CFS:

Part 1: https://www.youtube.com/watch?v=X3Ym8rnYk_4

Part 2: https://www.youtube.com/watch?v=GIkS4w3tIg8

#POTS #MEcfs #Dysautonomia

Der Nachteil daran dass mein Betablocker jetzt meine Tachykardie durch mein #POTS in Schach hält ist dass ich mich trotzdem oft richtig scheiße fühle wenn ich aufrecht stehen muss.
Früher konnte ich auf meine Pulsuhr schauen und mir selbst sagen "hey, du hast einen Puls von 160, du darfst dich scheiße fühlen!"
Jetzt ist mein Puls aber nur noch 90 bis 120 oder so,und ich fühl mich aber genau so scheiße. Und mein Gehirn sagt mir ich hab keinen Grund dafür 😬🙈
Fun with #mecfs und #dysautonomia👍☠

#IDMastodon #CaseReport @thelancet
#Dysautonomia secondary to #SARSCoV2 infection and associated with #longCOVID.
📌 https://www.thelancet.com/action/showPdf?pii=S0140-6736%2823%2901461-7

From @MassMECFS e-newsletter:
"CONGRATULATIONS to ME/CFS Advocates in Minnesota!" piece

Link:
https://www.revisor.mn.gov/bills/text.php?number=sf2995&version=latest&session=ls93&session_year=2023&session_number=0

#LongCOVID #MECFS #Dysautonomia #POTS @longcovid @mecfs @dysautonomia @pots

(US)
From @MassMECFS e-newsletter:

Sounds like it would be great if "people with ME/#CFS, #LongCOVID, #posttreatmentLymedisease, #POTS, and #dysautonomia sign up"

Link:
https://allofus.nih.gov/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs @pots @dysautonomia @lyme

@NewsBlogged

⬆️ #LongCovid #dysautonomia #POTS

@blogdiva Yep. So many years of neglect. No treatments due to vastly underfunded research.

Many viruses can trigger long term illnesses - COVID, flu, SARS, EBV, etc.

US government ignored the warnings from ME/CFS patients and patient advocacy groups that the pandemic was going to trigger many more cases of ME/CFS, POTS, etc. Several studies show that roughly half of Long Covid cases meet ME/CFS diagnostic criteria.

https://www.meaction.net/stoprestpace/

#COVID #LongCovid #MEcfs #POTS #Dysautonomia

#migraine kicking me while I’m down today, which makes sense — next monthly injection is on Sunday.

But having to miss tomorrow’s fun plans because I spent today in a foggy disoriented distracted haze of mild pain really just feels bad.

This is a huge improvement over last year! The diagnosis of my #POTS and treatment for #dysautonomia has helped so much … but being able to make plans and then having to cancel them just plain sucks.

@andrewdessler A message for that Washington Post headline writer:

Maybe "your" body can build up a tolerance to heat, but "my" body cannot!

Image description: Headline in the "Climate Solutions" section(!) that says, "Your body can build up a tolerance to heat. Here's how."

#AltText4You #Dysautonomia #POTS #OrthostaticIntolerance

A recording of this webinar is now available on YouTube:

https://www.youtube.com/watch?v=_9cujWQgi5g

#Dysautonomia #POTS #MEcfs #LongCovid #ChronicIllness #OrthostaticIntolerance

Scheduled for tomorrow!

Solve M.E. webinar: "The Future of Symptom Tracking"

STAT Health CEO Daniel Lee will discuss an in-ear device that "measures blood flow to the head [and] tracks changes in heart rate and blood pressure trend when users stand up."

Tuesday, July 25, 2-3 PM Pacific Time

https://solvecfs.org/event/the-future-of-symptom-tracking-exploring-stat-healths-revolutionary-in-ear-device-that-measures-blood-flow-to-head/

#Dysautonomia #POTS #MEcfs #LongCovid #ChronicIllness #OrthostaticIntolerance

@Pawpower
Hi 👋 Hope it's OK to add a suggestion for you 😁

I use ORS (oral rehydration salts) for orthostatic intolerance. I prefer brands that match the WHO (World Health Organization) ORS recipe.

Normalyte Pure is one brand I use - no stevia, no artificial flavors/colors, just sodium, potassium, dextrose. It comes in packets to be mixed with a half liter of water.

https://normalyte.com/collections/hydration-bags/products/normalyte-pure-hydration-bag

PS. I'm not affiliated with them, just a customer

#POTS #Dysautonomia

I got myself a Fitbit to keep a better eye on my heartrate and well, if I had any doubt left if I really have POTS... #dysautonomia

Recordings from the recent June 29-30 event by NASEM (National Academies of Sciences, Engineering, and Medicine) are now available.

The event was titled:

"Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors"

Scroll down to see links to videos and meeting materials.

https://www.nationalacademies.org/event/06-29-2023/toward-a-common-research-agenda-in-infection-associated-chronic-illnesses-a-workshop-to-examine-common-overlapping-clinical-and-biological-factors

#Research #LongCovid #MEcfs #Lyme #Dysautonomia #MultipleSclerosis #ChronicIllness

Where are the #NEISvoid people?
#ChronicPain #ChronicIllness
#MECFS #LongCovid #Migraine #Endometriosis #Dysautonomia #POTS #Disability #SevereME #PwME #Spoonie

Say hi 👋🏻

(I was hoping we’d build a #neisvoid / chronic illness-type place here.)

@neisvoid @mecfs
@chronicpain
@chronicillness
@disability

*Virtual Option* Conference, this weekend, register ASAP.

#Dysautonomia #POTS & #autonomic disorders are very common in #LongCovid patients - everyone should be interested.

We invite you to join Dysautonomia International for the world's largest conference on autonomic nervous system disorders, July 14-17, 2023 in metropolitan Washington, DC! Guests will enjoy a fantastic weekend of educational seminars, engaging speakers, and social events July 14-16, followed by Dysautonomia Advocacy Day on Capitol Hill on July 17. This event brings together patients, caregivers, researchers, clinicians, industry representatives, and non-profit leaders and government policy makers. In-person and virtual registration options are available.

(Virtual registration includes access to recordings of sessions.)

https://www.dysconf.org/

I’ve decided to give decaf #coffee another try because I miss it too much, so I bought a cheap, small drip coffee maker that fits on my bedside table.

I already feel wired from the cup I just had so I probably won’t be able to sleep tonight (insomnia is why I had to quit), but I hope that I can build a tolerance if I keep at it for a few days. There really isn’t much caffeine in decaf after all…🤞☕️

#NEISvoid #MECFS #pwME #POTS #Dysautonomia