#dysautonomia — 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

Where Pain Learns to Breathe: And Still, I Do

https://kandiblaze.wordpress.com/2026/04/29/where-pain-learns-to-breathe-and-still-i-do/

Where Pain Learns to Breathe: And Still, I Do

https://kandiblaze.wordpress.com/2026/04/29/where-pain-learns-to-breathe-and-still-i-do/

Where Pain Learns to Breathe: And Still, I Do

https://kandiblaze.wordpress.com/2026/04/29/where-pain-learns-to-breathe-and-still-i-do/

Where Pain Learns to Breathe: And Still, I Do

https://kandiblaze.wordpress.com/2026/04/29/where-pain-learns-to-breathe-and-still-i-do/

Where Pain Learns to Breathe: And Still, I Do

https://kandiblaze.wordpress.com/2026/04/29/where-pain-learns-to-breathe-and-still-i-do/

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 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

If you'd rather call your U.S. senators instead of sending them email here's an automated tool for that:

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27

You can always do both - send email and call - if you have the time and energy!

Thank you for whatever action(s) you're able to do to get this research funding approved! ❤️

@longcovid @mecfs

#FundLongCovid #LongCovid #MEcfs #POTS #Dysautonomia #CovidIsNotOver #MedMastodon #USPol

If you'd rather call your U.S. senators instead of sending them email here's an automated tool for that:

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27

You can always do both - send email and call - if you have the time and energy!

Thank you for whatever action(s) you're able to do to get this research funding approved! ❤️

@longcovid @mecfs

#FundLongCovid #LongCovid #MEcfs #POTS #Dysautonomia #CovidIsNotOver #MedMastodon #USPol

If you'd rather call your U.S. senators instead of sending them email here's an automated tool for that:

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27

You can always do both - send email and call - if you have the time and energy!

Thank you for whatever action(s) you're able to do to get this research funding approved! ❤️

@longcovid @mecfs

#FundLongCovid #LongCovid #MEcfs #POTS #Dysautonomia #CovidIsNotOver #MedMastodon #USPol

If you'd rather call your U.S. senators instead of sending them email here's an automated tool for that:

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27

You can always do both - send email and call - if you have the time and energy!

Thank you for whatever action(s) you're able to do to get this research funding approved! ❤️

@longcovid @mecfs

#FundLongCovid #LongCovid #MEcfs #POTS #Dysautonomia #CovidIsNotOver #MedMastodon #USPol

If you'd rather call your U.S. senators instead of sending them email here's an automated tool for that:

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27

You can always do both - send email and call - if you have the time and energy!

Thank you for whatever action(s) you're able to do to get this research funding approved! ❤️

@longcovid @mecfs

#FundLongCovid #LongCovid #MEcfs #POTS #Dysautonomia #CovidIsNotOver #MedMastodon #USPol

🚨Urgent!

You can help get more research funding for Long Covid, ME/CFS, and related illnesses!

Use the link below to email your senators and ask them to sign on to a "Dear Colleague" letter for FY27 (fiscal year 2027) which calls for "$210 million in Long COVID research funding at NIH, ARPA-H, and AHRQ"

The deadline for this action has been extended to Monday, April 20!

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27-1

@longcovid @mecfs

#LongCovid #MEcfs #POTS #Dysautonomia #FundLongCovid #MedMastodon #USPol #NIH

🚨Urgent!

You can help get more research funding for Long Covid, ME/CFS, and related illnesses!

Use the link below to email your senators and ask them to sign on to a "Dear Colleague" letter for FY27 (fiscal year 2027) which calls for "$210 million in Long COVID research funding at NIH, ARPA-H, and AHRQ"

The deadline for this action has been extended to Monday, April 20!

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27-1

@longcovid @mecfs

#LongCovid #MEcfs #POTS #Dysautonomia #FundLongCovid #MedMastodon #USPol #NIH

🚨Urgent!

You can help get more research funding for Long Covid, ME/CFS, and related illnesses!

Use the link below to email your senators and ask them to sign on to a "Dear Colleague" letter for FY27 (fiscal year 2027) which calls for "$210 million in Long COVID research funding at NIH, ARPA-H, and AHRQ"

The deadline for this action has been extended to Monday, April 20!

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27-1

@longcovid @mecfs

#LongCovid #MEcfs #POTS #Dysautonomia #FundLongCovid #MedMastodon #USPol #NIH

🚨Urgent!

You can help get more research funding for Long Covid, ME/CFS, and related illnesses!

Use the link below to email your senators and ask them to sign on to a "Dear Colleague" letter for FY27 (fiscal year 2027) which calls for "$210 million in Long COVID research funding at NIH, ARPA-H, and AHRQ"

The deadline for this action has been extended to Monday, April 20!

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27-1

@longcovid @mecfs

#LongCovid #MEcfs #POTS #Dysautonomia #FundLongCovid #MedMastodon #USPol #NIH

🚨Urgent!

You can help get more research funding for Long Covid, ME/CFS, and related illnesses!

Use the link below to email your senators and ask them to sign on to a "Dear Colleague" letter for FY27 (fiscal year 2027) which calls for "$210 million in Long COVID research funding at NIH, ARPA-H, and AHRQ"

The deadline for this action has been extended to Monday, April 20!

https://win.newmode.net/longcovidcampaign/signonsenatorsfundlongcovidinfy27-1

@longcovid @mecfs

#LongCovid #MEcfs #POTS #Dysautonomia #FundLongCovid #MedMastodon #USPol #NIH

#ThreeGoodThings #3GoodThings

1. Day out with the family, lots of smiles and cute pictures of the kids.

2. Saved myself from passing out today! Close one 🫠
(The trick was a caffeinated soda, salt, and sitting today) #POTS #Dysautonomia

3. Got some fun fidget-ey items at a shop. Apparently that's a thing for me. 3D printed critters and some rubix-style cube thing brought me a surprising amount of joy. #AuDHD

#ThreeGoodThings #3GoodThings

1. Day out with the family, lots of smiles and cute pictures of the kids.

2. Saved myself from passing out today! Close one 🫠
(The trick was a caffeinated soda, salt, and sitting today) #POTS #Dysautonomia

3. Got some fun fidget-ey items at a shop. Apparently that's a thing for me. 3D printed critters and some rubix-style cube thing brought me a surprising amount of joy. #AuDHD

#ThreeGoodThings #3GoodThings

1. Day out with the family, lots of smiles and cute pictures of the kids.

2. Saved myself from passing out today! Close one 🫠
(The trick was a caffeinated soda, salt, and sitting today) #POTS #Dysautonomia

3. Got some fun fidget-ey items at a shop. Apparently that's a thing for me. 3D printed critters and some rubix-style cube thing brought me a surprising amount of joy. #AuDHD

#ThreeGoodThings #3GoodThings

1. Day out with the family, lots of smiles and cute pictures of the kids.

2. Saved myself from passing out today! Close one 🫠
(The trick was a caffeinated soda, salt, and sitting today) #POTS #Dysautonomia

3. Got some fun fidget-ey items at a shop. Apparently that's a thing for me. 3D printed critters and some rubix-style cube thing brought me a surprising amount of joy. #AuDHD

#ThreeGoodThings #3GoodThings

1. Day out with the family, lots of smiles and cute pictures of the kids.

2. Saved myself from passing out today! Close one 🫠
(The trick was a caffeinated soda, salt, and sitting today) #POTS #Dysautonomia

3. Got some fun fidget-ey items at a shop. Apparently that's a thing for me. 3D printed critters and some rubix-style cube thing brought me a surprising amount of joy. #AuDHD

From a Nancy Klimas team:

Elevated blood viscosity is associated with dysautonomia in long COVID symptoms

https://www.sciencedirect.com/science/article/pii/S2666602226000649

Screenshot from latest Science for ME weekly update

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

From a Nancy Klimas team:

Elevated blood viscosity is associated with dysautonomia in long COVID symptoms

https://www.sciencedirect.com/science/article/pii/S2666602226000649

Screenshot from latest Science for ME weekly update

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

From a Nancy Klimas team:

Elevated blood viscosity is associated with dysautonomia in long COVID symptoms

https://www.sciencedirect.com/science/article/pii/S2666602226000649

Screenshot from latest Science for ME weekly update

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

From a Nancy Klimas team:

Elevated blood viscosity is associated with dysautonomia in long COVID symptoms

https://www.sciencedirect.com/science/article/pii/S2666602226000649

Screenshot from latest Science for ME weekly update

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

From a Nancy Klimas team:

Elevated blood viscosity is associated with dysautonomia in long COVID symptoms

https://www.sciencedirect.com/science/article/pii/S2666602226000649

Screenshot from latest Science for ME weekly update

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

@www.cidrap.umn.edu

"Despite having similar pre-pandemic health profiles, participants with eye symptoms reported significantly worse overall health than those without such symptoms. Participants with symptoms also had higher rates of postural orthostatic tachycardia syndrome (rapid heart rate upon standing) and autonomic nervous system disorders such as dizziness, tremors, and difficulty regulating body temperature (38% vs 15%); gastrointestinal issues (21% vs 11%); and migraines (15% vs 4%)."

Sounds like Sjogrens and/or small fiber neuropathy.

#dysautonomia #POTS #Sjogrens #LongCovid

@www.cidrap.umn.edu

"Despite having similar pre-pandemic health profiles, participants with eye symptoms reported significantly worse overall health than those without such symptoms. Participants with symptoms also had higher rates of postural orthostatic tachycardia syndrome (rapid heart rate upon standing) and autonomic nervous system disorders such as dizziness, tremors, and difficulty regulating body temperature (38% vs 15%); gastrointestinal issues (21% vs 11%); and migraines (15% vs 4%)."

Sounds like Sjogrens and/or small fiber neuropathy.

#dysautonomia #POTS #Sjogrens #LongCovid

@www.cidrap.umn.edu

"Despite having similar pre-pandemic health profiles, participants with eye symptoms reported significantly worse overall health than those without such symptoms. Participants with symptoms also had higher rates of postural orthostatic tachycardia syndrome (rapid heart rate upon standing) and autonomic nervous system disorders such as dizziness, tremors, and difficulty regulating body temperature (38% vs 15%); gastrointestinal issues (21% vs 11%); and migraines (15% vs 4%)."

Sounds like Sjogrens and/or small fiber neuropathy.

#dysautonomia #POTS #Sjogrens #LongCovid

@www.cidrap.umn.edu

"Despite having similar pre-pandemic health profiles, participants with eye symptoms reported significantly worse overall health than those without such symptoms. Participants with symptoms also had higher rates of postural orthostatic tachycardia syndrome (rapid heart rate upon standing) and autonomic nervous system disorders such as dizziness, tremors, and difficulty regulating body temperature (38% vs 15%); gastrointestinal issues (21% vs 11%); and migraines (15% vs 4%)."

Sounds like Sjogrens and/or small fiber neuropathy.

#dysautonomia #POTS #Sjogrens #LongCovid

Feeling exhausted this morning, despite a good sleep.

Begining to realise how exhausting it is to live with #dysautonomia (which developed following #shingles vaccine) and that I need to allow myself to just sit and let my muscles fully relax. Of course, the 3 levels of #tinnitus (one of which is pulsatile) is adding to the exhaustion.

Not looking for sympathy, just needing to say it out loud (well, type it out loud...😂)

Feeling exhausted this morning, despite a good sleep.

Begining to realise how exhausting it is to live with #dysautonomia (which developed following #shingles vaccine) and that I need to allow myself to just sit and let my muscles fully relax. Of course, the 3 levels of #tinnitus (one of which is pulsatile) is adding to the exhaustion.

Not looking for sympathy, just needing to say it out loud (well, type it out loud...😂)

Feeling exhausted this morning, despite a good sleep.

Begining to realise how exhausting it is to live with #dysautonomia (which developed following #shingles vaccine) and that I need to allow myself to just sit and let my muscles fully relax. Of course, the 3 levels of #tinnitus (one of which is pulsatile) is adding to the exhaustion.

Not looking for sympathy, just needing to say it out loud (well, type it out loud...😂)

Feeling exhausted this morning, despite a good sleep.

Begining to realise how exhausting it is to live with #dysautonomia (which developed following #shingles vaccine) and that I need to allow myself to just sit and let my muscles fully relax. Of course, the 3 levels of #tinnitus (one of which is pulsatile) is adding to the exhaustion.

Not looking for sympathy, just needing to say it out loud (well, type it out loud...😂)

Feeling exhausted this morning, despite a good sleep.

Begining to realise how exhausting it is to live with #dysautonomia (which developed following #shingles vaccine) and that I need to allow myself to just sit and let my muscles fully relax. Of course, the 3 levels of #tinnitus (one of which is pulsatile) is adding to the exhaustion.

Not looking for sympathy, just needing to say it out loud (well, type it out loud...😂)

A couple more short quotes from the paper:

"Long COVID (LC) is a mass disabling event of significant public health concern ..."

"The clinical characteristics of Long COVID overlap with those of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and dysautonomia ... risk of both these conditions increases by up to 60% and 80%, respectively, after COVID infection."

@longcovid @mecfs

#LongCovid #PostCovid #PASC #CovdIsNotOver #MEcfs #Dysautonomia #PublicHealth #Disability