#orthostaticintolerance — Public Fediverse posts

This 2-part video series from the Bateman Horne Center about Orthostatic Intolerance in ME/CFS is very helpful:

"What is Orthostatic Intolerance in ME/CFS?"

Part 1 - Diagnostic Workup

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

Part 2 - Management

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

11/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia #BatemanHorne

This 2-part video series from the Bateman Horne Center about Orthostatic Intolerance in ME/CFS is very helpful:

"What is Orthostatic Intolerance in ME/CFS?"

Part 1 - Diagnostic Workup

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

Part 2 - Management

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

11/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia #BatemanHorne

This 2-part video series from the Bateman Horne Center about Orthostatic Intolerance in ME/CFS is very helpful:

"What is Orthostatic Intolerance in ME/CFS?"

Part 1 - Diagnostic Workup

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

Part 2 - Management

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

11/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia #BatemanHorne

This 2-part video series from the Bateman Horne Center about Orthostatic Intolerance in ME/CFS is very helpful:

"What is Orthostatic Intolerance in ME/CFS?"

Part 1 - Diagnostic Workup

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

Part 2 - Management

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

11/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia #BatemanHorne

This 2-part video series from the Bateman Horne Center about Orthostatic Intolerance in ME/CFS is very helpful:

"What is Orthostatic Intolerance in ME/CFS?"

Part 1 - Diagnostic Workup

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

Part 2 - Management

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

11/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia #BatemanHorne

I'm back! 😁

Next I'll share some resources.

I'll start by talking about Orthostatic Intolerance (OI). This is when folks get symptoms when in an upright posture, most often from standing, but also when sitting upright. This condition is common in both ME/CFS and Long Covid.

Sadly, many doctors don't know about OI even though it's an optional diagnostic criteria for ME/CFS.

https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf

10/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia

I'm back! 😁

Next I'll share some resources.

I'll start by talking about Orthostatic Intolerance (OI). This is when folks get symptoms when in an upright posture, most often from standing, but also when sitting upright. This condition is common in both ME/CFS and Long Covid.

Sadly, many doctors don't know about OI even though it's an optional diagnostic criteria for ME/CFS.

https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf

10/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia

I'm back! 😁

Next I'll share some resources.

I'll start by talking about Orthostatic Intolerance (OI). This is when folks get symptoms when in an upright posture, most often from standing, but also when sitting upright. This condition is common in both ME/CFS and Long Covid.

Sadly, many doctors don't know about OI even though it's an optional diagnostic criteria for ME/CFS.

https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf

10/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia

I'm back! 😁

Next I'll share some resources.

I'll start by talking about Orthostatic Intolerance (OI). This is when folks get symptoms when in an upright posture, most often from standing, but also when sitting upright. This condition is common in both ME/CFS and Long Covid.

Sadly, many doctors don't know about OI even though it's an optional diagnostic criteria for ME/CFS.

https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf

10/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia

I'm back! 😁

Next I'll share some resources.

I'll start by talking about Orthostatic Intolerance (OI). This is when folks get symptoms when in an upright posture, most often from standing, but also when sitting upright. This condition is common in both ME/CFS and Long Covid.

Sadly, many doctors don't know about OI even though it's an optional diagnostic criteria for ME/CFS.

https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf

10/n

@mecfs @longcovid

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia

From the US 🇺🇸

Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms

https://www.clinmedres.org/content/clinmedres/24/1/28

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
#dysautonomia #POTS @pots #OI #OrthostaticIntolerance

From the US 🇺🇸

Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms

https://www.clinmedres.org/content/clinmedres/24/1/28

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
#dysautonomia #POTS @pots #OI #OrthostaticIntolerance

From the US 🇺🇸

Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms

https://www.clinmedres.org/content/clinmedres/24/1/28

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
#dysautonomia #POTS @pots #OI #OrthostaticIntolerance

From the US 🇺🇸

Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms

https://www.clinmedres.org/content/clinmedres/24/1/28

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
#dysautonomia #POTS @pots #OI #OrthostaticIntolerance

From Japan:

" #COVID19 infection shows significant association with increased autonomic dysfunction pharmacotherapy initiation, with a 36% rise in prescriptions over 8 months."

https://www.tandfonline.com/doi/abs/10.1080/07853890.2026.2618323

Screenshot from Science for ME update

#LongCovid #PASC #dysautonomia #POTS @pots #OI #OrthostaticIntolerance @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus #COVID #COVID_19 #COVIDー19 #SARSCoV2

Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions

https://onelifelivedwell.substack.com/p/showers-shouldnt-cost-your-energy

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #Spoonies #Spoonie

The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test

https://www.mdpi.com/2077-0383/14/11/3648

Screenshot from the January 2026 AMMES newsletter

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #OrthostaticIntolerance @mecfs @pots

"When I Don't Feel 'Disabled Enough' as Someone With a Chronic Illness"

https://themighty.com/topic/fibromyalgia/feeling-not-disabled-enough-chronic-illness

"How many of you who have fibromyalgia or similar #chronicillness sometimes feel like you’re judged for not being 'disabled enough?'”

#invisibleillness #Spoonie #hiddenillness #Spoonielife #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @longcovid
#LongCovid #MEcfs #
@mecfs

Symptom: Neurogenic Inflammation and POTS Blood Pooling

https://www.illmarks.com/symptom-neurogenic-inflammation-and-pots-blood-pooling/

#art #autonomicDysfunction #AutonomicFailure #autonomicNervousSystem #bloodpooling #BloodPressure #bodyHorror #bodyMapping #bodyart #bodyhorror #cardiology #chronicIllness #dinet #dystautonomia #hypotension #longCovid #medart #medicalArt #medicalart #MillionsMissing #neurogenicInflammation #neurogenicInflammation #neurology #orthostaticHypotension #orthostaticIntolerance #posturalOrthostaticTachycardiaSyndrome #POTS #potsie #pwLC #pwme #SciArt #SciComms #SymptomMap #SymptomArt #SymptomMap #tinitus #tinnitus

@herbster @mecfs

PEM (post exertional malaise) can be difficult to explain. But I think orthostatic intolerance is even harder to explain.

People wonder how just standing still - or even sitting upright but I can do that longer - can be a problem. I have a lot more trouble standing still for a few minutes than walking for a few minutes. I must sit down to shower or brush my teeth.

Two helpful videos:

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

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

#MEcfs #PEM #OrthostaticIntolerance

See post #2 for a vaguely related comment from me on orthostatic intolerance

#POTS @pots #OI #OrthostaticIntolerance #chronicillness #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid

1/

"Systematic literature review: treatment of postural orthostatic tachycardia syndrome (POTS)" ["with a special focus on POTS therapy in children and people with ME/CFS."]

Free fulltext:
https://link.springer.com/article/10.1007/s10286-025-01172-2

#PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Heads-Up! Are You Missing an Easy Way to Improve Your Sleep and Health?

https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/

Interesting to read the rationale behind this approach (tilting the head of your bed) but still seems speculative for ME/CFS where "the normal rules often don't apply"

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance

From the blog: A list of some common warning signals of orthostatic intolerance.

#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia #MedEd

Blog post from Bateman Horne Center:

"Living with Orthostatic Intolerance (OI)"

https://batemanhornecenter.org/living-with-orthostatic-intolerance-oi/

"Living with orthostatic intolerance (OI) can turn activities like standing in line, taking a shower, or even sitting for too long—into exhausting tasks. OI happens when your body struggles to regulate blood pressure and heart rate when changing positions, like moving from lying down to sitting or standing."

#MEcfs #PwME #LongCovid #PwLC #OrthostaticIntolerance #POTS #Dysautonomia #MedEd

Iranian multicentre trial

Using Compression Stockings to Prevent Recurrence of Vasovagal Syncope: A Randomized Sham-Controlled Trial

https://www.jacc.org/doi/10.1016/j.jacc.2025.05.049

"The results do not support routine use of thigh-length ECS [elastic compression stockings]"

#VVS #OrthostaticIntolerance #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI

Cerebral blood flow changes in A ME/CFS and OI vs healthy controls, and B ME/CFS with OI vs ME/CFS without OI

From: Mapping cerebral blood flow in ME/CFS and orthostatic intolerance: insights from a systematic review

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06954-w

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots #OI #OrthostaticIntolerance

Mapping cerebral blood flow in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and orthostatic intolerance (OI)

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06954-w

"CBF (Cerebral Blood Flow) is reduced in ME/CFS and OI alone and having both conditions comorbidly amplifies CBF reductions. Therefore, observing CBF changes in ME/CFS with and without OI may be important in monitoring disease severity."

@mecfs @pots

#MEcfs #PwME #POTS #Dysautonomia #OrthostaticIntolerance #CBF

From ME Research UK:

As promised to a commenter last month, we have published an article clarifying the relationship between blood pressure and PoTS (a common ME/CFS comorbidity): bit.ly/potsandbp

#POTS #OrthostaticIntolerance @pots #mecfs @mecfs

What Not to Say to People With Complex Chronic Illness

https://www.medscape.com/viewarticle/what-not-say-people-complex-chronic-illness-2025a10006ft

Image is a screenshot from June 2025 AMMES e-newsletter

Hashtags:
@longcovid
#LongCovid #PASC @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #chronicillness @chronicillness
@spoonies #dysautonomia @dysautonomia
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance

@oftencalledcathy Seems likely.

With my orthostatic intolerance, which is very hard to explain to healthy folks, standing still a few minutes is worse (higher heart rate, dropping blood pressure, nausea, short of breath) than walking a few minutes.

(assuming level ground, cool temperatures, I'm having an okay day, etc)

Even unloading grocery bags from the car is easier than standing still! I think it's about blood flow and/or circulation.

#POTS #OrthostaticIntolerance #MEcfs #LongCovid

5/
"Orthostatic Intolerance Overview" from @bateman_horne_center (page 2 of 2)

https://onedrive.live.com/?authkey=%21AGyjrENR0e9TEoc&cid=94454629DB95DF81&id=94454629DB95DF81%211421619&parId=94454629DB95DF81%21105&o=OneUp

One of the fact sheets we sent to 3612 Irish GPs recently

#OrthostaticIntolerance #MEcfs @mecfs

5/
"Orthostatic Intolerance Overview" (page 1 of 2)

https://onedrive.live.com/?authkey=%21AGyjrENR0e9TEoc&cid=94454629DB95DF81&id=94454629DB95DF81%211421619&parId=94454629DB95DF81%21105&o=OneUp

One of the fact sheets we sent to 3612 Irish GPs recently

#OrthostaticIntolerance  #MEcfs
@mecfs

"'It’s like torture': The tilt table test could be risky for many people with Long COVID" [and ME/CFS] in @thesicktimes

https://thesicktimes.org/2025/04/08/its-like-torture-the-tilt-table-test-could-be-risky-for-many-people-with-long-covid/

Contains quotes from patients and also some experts in the field

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance

From Thailand:

Comparison of the head-up tilt test and the 10-minute NASA lean test for assessing blood pressure and heart rate responses in young individuals with postacute COVID-19 syndrome

https://journals.lww.com/bpmonitoring/abstract/9900/comparison_of_the_head_up_tilt_test_and_the.147.aspx

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance

Quote from Kate Bourne, an MD/PhD student whose research focuses on POTS:

"The average time to diagnosis for POTS is five years, so many patients face long diagnostic delays and once diagnosed face challenges including the lack of approved medications …

We also don’t fully understand the causes of POTS. More research is urgently needed to investigate the physiology of POTS and develop targeted treatments."

4/4

#POTS #LongCovid #MEcfs #OrthostaticIntolerance #Research

"Colvinns ... was referred to a cardiologist. Within a year, she was diagnosed with POTS, was recruited into a study and became a patient of Dr. Satish Raj, MD, a clinician-scientist specializing in autonomic disorders such as POTS.

Since her diagnosis, Colvinns has been involved in two University of Calgary POTS studies – one testing the potential of two different medications, and another testing the impact of salt."

3/n

#POTS #LongCovid #MEcfs #OrthostaticIntolerance #Research

New review by US authors

Cerebral Blood Flow in Orthostatic Intolerance

https://www.ahajournals.org/doi/10.1161/JAHA.124.036752

Has subsections on ME/CFS & long Covid

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #dysautonomia @dysautonomia

"Orthostatic Intolerance Overview" (for doctors) (Bateman Horne Center)

https://batemanhornecenter.org/wp-content/uploads/2024/09/Orthostatic-Intolerance-Overview-240911.pdf

#PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC

Unfortunately for some people with mobility issues, problems being upright (#OrthostaticIntolerance) mean they can't use traditional #wheelchairs or if they do, they can't be upright for long. This looks a interesting idea!

Not sure the context!

I found it here:
https://www.tumblr.com/mathew/765339413020622848?source=share

@chronicillness
@spoonies
@disability
#Disability #Spoonie #MEcfs #Bedbound #SevereME @severeme
#SevereME
@longcovid
#LongCovid #dysautonomia @dysautonomia #POTS @pots
#homebound
#housebound
#Disabled

#Worcester , #Massachusetts

From the MassME newsletter

Study of interplay of cellular landscapes and the role of oxidative stress in various conditions
https://www.umassmed.edu/slusslab/reclaim-study/

#MEcfs #hEDS #HypermobilitySyndrome #Orthostaticintolerance #POTS #LongCOVID @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #ChronicLyme
#GulfWarIllness @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid

There's a bit more info in their May newsletter:

https://mailchi.mp/stat-health.com/may-2024-newsletter

Edit: I'm not sure why the link preview says "we've run into an issue" - link seems to work

#Dysautonomia #MEcfs #LongCovid #POTS #Syncope #Hypotension #OrthostaticIntolerance

I've been reading about this device (an in the ear device that measures blood flow) for a while. The company has a new name, Lumia health.

I don't normally share product website links but this device (still in the early stages) has me intrigued:

https://lumiahealth.com/

Is anyone out there using this device? Or have other information about it? Thanks!

#Dysautonomia #MEcfs #LongCovid #POTS #Syncope #Hypotension #OrthostaticIntolerance

Improvement in chronic pelvic pain, orthostatic intolerance and interstitial cystitis symptoms after treatment of pelvic vein insufficiency - Steven J Smith, Michael J Sichlau, B Holly Smith, Dacre RT Knight, Brenda Chen, Peter C Rowe, 2023
#POTS #InterstitialCystitis #PelvicPain #OrthostaticIntolerance

https://journals.sagepub.com/eprint/WE5DIH9IRUPSPG4FI5KC/full

Webinar from Solve M.E. :

"The Future of Symptom Tracking: Exploring STAT Health’s Revolutionary In-Ear Device That Measures Blood Flow to Head"

Tuesday, July 25, 2 - 3 pm PDT

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

#Dysautonomia #POTS #OrthostaticIntolerance #MEcfs #LongCovid #Wearable #SolveME

"This isn’t an AirPod — it’s a wearable unlike any I’ve seen before "

https://www.digitaltrends.com/mobile/stat-health-fainting-long-covid-in-ear-wearable-interview-daniel-lee/

#StatHealth #Hypoperfusion #Dysautonomia #POTS #MECFS #LongCovid #OrthostaticIntolerance #Wearable