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@longcovidanswers.bsky.socialOct 16, 2026, 6:30 PM

POTS: What can help?

Dr Jane McKay discusses fluids, salt, compression and medication. Heat can worsen symptoms, so compression needs may vary by season.

Consult your healthcare provider before changing treatment.

#LongCOVID #POTS #Dysautonomia

@knyki.bsky.socialOct 16, 2026, 4:31 PM

I'd make so much money if I wasn't nerfed by the universe. #disabled #disabilityrights #chronicillness #spoonie #degenerativediscdisease #vasovagalsyncope #dysautonomia

@saltshakerannie.bsky.socialOct 16, 2026, 11:24 AM

#Dysautonomia #Orthostatichypotention #chronicillness

@saltshakerannie.bsky.socialOct 16, 2026, 11:22 AM

#Dysautonomia #Orthostatichypotention

BKelly@broadwaybabyto.bsky.socialOct 16, 2026, 6:00 AM

If your expectations of healthcare comes from TV shows like House & Grey’s Anatomy - you’re in for a real shock. The reality of most complex chronic illness would play out like a horror film than a McDreamy laden drama. It’s medical propaganda and not at all representative of what we experience.

@benking01.bsky.socialOct 16, 2026, 5:57 AM

What an incredibly busy rollercoaster of a week 😮

And yet I seem 🤞 to have Paced it well...

Time will tell.

#LongCovid #Dysautonomia #PEM-avoidance

BDr Ben King 🌍@benking01.bsky.socialOct 10, 2026, 7:28 PM

My #LongCovid body was as Stable, Balanced and Ready as it gets first thing this Saturday morning. Physically today has been easy. Mentally lacking any strain also... Interested to see what Emotional strain might do to my Morning HRV readings on Sunday morning 🤔 I cried so much today 🙏

Visible Health just 4.3 out of today's 24 pace points used. 16 in hand.Little physical exertion toda6 but very high emotions
@clin-auton-res.bsky.socialOct 15, 2026, 10:41 PM

New in Clinical Autonomic Research: an AAS- and AANEM-endorsed consensus statement on clinical autonomic testing.

“Autonomic testing is irreplaceable for clinical decision-making in certain circumstances.” — Cortez et al.

Open access 👇
#Dysautonomia #POTS

@benking01.bsky.socialOct 13, 2026, 11:10 AM

Midday Tuesday. Under half of today's 'Moderate' movement budget used, despite two treadmill sessions.

Resisting the urge to start preparing for Ofsted tomorrow; as soon as I switch-on to the Inspection there'll be no coming out again 🙏

My #Dysautonomia is under control.

#LongCovid #Pacing

KiActiv movement graphs. Dark blue is Moderate movement. Light blue is Light movement.
@rivermoonartist.bsky.socialOct 10, 2026, 2:24 PM

Just venting here. Losing both my food assistance and my health insurance. My husband is the only one who works. He makes 16 an hour. I get commissions, but I don't make much from them. I have #dysautonomia and can't work a normal job. This is insane. #mutualaid #foodassistance #healthcareforall

Photo, no descriptionPhoto, no description
@thezebraalliance.bsky.socialOct 9, 2026, 4:42 PM

Do you live with Dysautonomia?
What do you want people to know about living with it?

#Dysautonomia linktr.ee/thezebraalliance #chronicillness #EDS #ehlersdanlossyndrome #hEDS #HSD

@longcovidjourney.bsky.socialOct 7, 2026, 8:54 PM

What if hypermobility is part of the Long COVID puzzle?

Research is finding links between hypermobility, hEDS, dysautonomia and Long COVID.

Maybe COVID doesn’t create every vulnerability,it exposes some of them.

#LongCovid #hEDS #Dysautonomia

longcovidjourney.com/long-covid-h...

@mocpass.bsky.socialOct 6, 2026, 6:20 PM

Day 1 of midodrine. Nonstop waves of goosebumps on my head and arms, and I feel the slightest tension headache. But also my head feels clear for the first time in months. #dysautonomia

@tomkindlon.bsky.socialOct 6, 2026, 1:22 AM

From Austria

Hair cortisol concentration and basal heart rate variability differentiate long COVID from depressive disorders in youth

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#LongCovid #depression #Dysautonomia #NeuroPASC #PASC

Hair cortisol concentration and basal heart rate variability differentiate long COVID from depressive disorders in youth — Oehlke et al "Without a healthy reference, it cannot be determined whether HCC or HRV indices in either clinical group deviate from normative physiological levels, nor whether the observed patterns are specific to LC or depressive disorders. Accordingly, the present findings should be understood as relative differences between the two clinical groups." Article | Thread
@tomkindlon.bsky.socialOct 6, 2026, 1:15 AM

From Ireland

Dysautonomia and Postural Orthostatic Syndrome of Hypocapnia in Long COVID Syndrome

Screenshot from latest Science for ME weekly update

#LongCovid #POTS #Dysautonomia #NeuroPASC #PASC

Dysautonomia and Postural Orthostatic Syndrome of Hypocapnia in Long COVID Syndrome — O’Brien et al "Patients from this cohort with LCS, dysfunctional breathing and hypocapnia based on the lean test were referred for targeted pulmonary rehab." "There was no significant change in end-tidal CO2 or heart rate following the intervention." Article | Thread
@unveilingunicorns.bsky.socialOct 5, 2026, 11:28 PM

POTS (postural orthostatic tachycardia syndrome-form of dysautonomia. Heart rate climbs when standing. Dizzy, fainting, brain fog & fatigue are reported. AI assisted; do your own research.

#UnveilingUnicorns #InvisibleIllness #Spoonie #POTSAwareness #Dysautonomia #ChronicIllness #ButYouDontLookSick

@halcionandon.bsky.socialOct 4, 2026, 5:00 AM

I’d really like a chance at life.
I need a stable, safe environment. Without it, I will continue to decline & die.

#MutualAid #ChronicIllness #MyalgicEncephalomyelitis #MECFS #MCAS #POTS #EhlersDanlos #LongCovid #Endometriosis #ChronicPain #Dysautonomia

chuffed.org/project/1619...

@achronicvoice.comOct 3, 2026, 10:30 PM

“When you’re living with #POTS - gravity is NOT your friend. Our bodies do not function properly when upright. As a result - most of us feel our best when we’re horizontal": buff.ly/nVZz8Ge

by @Broadwaybabyto.bsky.social
#dysautonomia #ChronicIllness #InvisibleIllness #spoonie #NEisVoid #disabled

@dutchsgirl.bsky.socialOct 2, 2026, 10:32 PM

So basically, fuck #dysautonomia and the horse it rode in on!

I'm sorry you are going through so much. 😑

@acii-ttv.bsky.socialOct 2, 2026, 9:38 PM

☁️ Dysautonomia Awareness Month! ☁️

PoTS can look different for everyone. For example, I don't faint but I frequently experience presyncope. It can take years to get diagnosed, and many don't even know PoTS exists.

#PoTSAwareness
#Dysautonomia

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@edsissuchamess.bsky.socialOct 2, 2026, 8:56 PM

One of the most frustrating parts of #dysautonomia is that when my body gets triggered into a fight or flight response, it takes hours or even days before my body adjusts back to “normal“.

And for obvious reasons, my anxiety has been through the roof lately, so every time I have a panic attack…. 🙄

@ehlers-danlos.comOct 2, 2026, 1:03 PM

Dysautonomia can occur in people with Ehlers-Danlos syndromes (EDS) & hypermobility spectrum disorders (HSD). Most research on #dysautonomia in #EDS & #HSD has focused on #hypermobileEDS (hEDS) and HSD. Dysautonomia has also been reported in people with other types of EDS, including #cEDS & #vEDS.