🧵
A sympathetic & knowledgeable OT who specialises in #longCovid & ME/CFS reflects on the lessons from how the long Covid community came together and how it shows patient knowledge & expertise from lived experience is important in many ways.

She also highlights how the pandemic highlighted gaps in care for #MECFS, #POTS & related conditions

https://onelifelivedwell.substack.com/p/long-covid-began-with-somethings

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#PASC #PwLC #postcovid #postcovid19 @pots

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🧵
A sympathetic & knowledgeable OT who specialises in #longCovid & ME/CFS reflects on the lessons from how the long Covid community came together and how it shows patient knowledge & expertise from lived experience is important in many ways.

She also highlights how the pandemic highlighted gaps in care for #MECFS, #POTS & related conditions

https://onelifelivedwell.substack.com/p/long-covid-began-with-somethings

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#PASC #PwLC #postcovid #postcovid19 @pots

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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

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

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

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

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

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

dear fedi folk,

does anyone here have experience with csf leaks (ideally as a result of hEDS but not necessarily)? i'm on day 12 (13?) of a devil migraine that's affected my balance and vision, worsened my POTS and tinnitus, is causing sporadic pulsatile tinnitus as well plus mega-weird pulsing pressure in my head, and is seriously messing with my brain/anxiety. plus ofc the nausea and flashes. and pain in my head and neck, which is sometimes quite severe. so i'm wondering if it's actually a migraine or not.

these symptoms aren't new-new (and i haven't had a headache-free day in literally years, migraine or "just" a headache), but they are getting worse / more frequent, and i'm getting worried.

i also don't have a doctor here bc multiple drs in this country have told me that ehlers-danlos and sjögren's and autonomic dysfunction, etc., don't exist. at all.

(i will go to urgent care if things get worse, but it's far and they'll likely just send me home, so.)

so if anyone's dealt with this and wouldn't mind comparing notes, i'd love to.

thank you!

#askFedi #hEDS #POTS

dear fedi folk,

does anyone here have experience with csf leaks (ideally as a result of hEDS but not necessarily)? i'm on day 12 (13?) of a devil migraine that's affected my balance and vision, worsened my POTS and tinnitus, is causing sporadic pulsatile tinnitus as well plus mega-weird pulsing pressure in my head, and is seriously messing with my brain/anxiety. plus ofc the nausea and flashes. and pain in my head and neck, which is sometimes quite severe. so i'm wondering if it's actually a migraine or not.

these symptoms aren't new-new (and i haven't had a headache-free day in literally years, migraine or "just" a headache), but they are getting worse / more frequent, and i'm getting worried.

i also don't have a doctor here bc multiple drs in this country have told me that ehlers-danlos and sjögren's and autonomic dysfunction, etc., don't exist. at all.

(i will go to urgent care if things get worse, but it's far and they'll likely just send me home, so.)

so if anyone's dealt with this and wouldn't mind comparing notes, i'd love to.

thank you!

#askFedi #hEDS #POTS

· Two recent studies state that #LongCOVID is an occupational disease.
· Vanderbilt researchers are conducting an immune profiling study on people with Long COVID and postural orthostatic tachycardia syndrome ( #POTS)
· A new phase two remote clinical trial was recently announced for myalgic encephalomyelitis (ME) #MECFS

https://thesicktimes.org/2025/12/23/research-updates-december-23/

#ResearchUpdates

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

I know a young person experiencing and learning to adapt to life with POTS
They are exploring mobility aids, but have very limited resources, so I’m looking for advice on rollators vs wheelchair for function, utility, flexibility, comfort, and because cost. In general they experience symptoms on the milder side of things; vertical and functional through most school days and activities, doing well for several weeks at a stretch then experiencing periods where worsening symptoms prevent them from keeping up. Activities out of the house include high school, drama, choir, public transit (including a walking ‘last mile’ at times) and craft/maker fairs. Location Edmonton, so winter climate a consideration.
Advice and comments from experience and boosts/tags welcome, I know there are many of you out there.

#Advice #POTS #MobilityAids #Rollator #WheelChair

I know a young person experiencing and learning to adapt to life with POTS
They are exploring mobility aids, but have very limited resources, so I’m looking for advice on rollators vs wheelchair for function, utility, flexibility, comfort, and because cost. In general they experience symptoms on the milder side of things; vertical and functional through most school days and activities, doing well for several weeks at a stretch then experiencing periods where worsening symptoms prevent them from keeping up. Activities out of the house include high school, drama, choir, public transit (including a walking ‘last mile’ at times) and craft/maker fairs. Location Edmonton, so winter climate a consideration.
Advice and comments from experience and boosts/tags welcome, I know there are many of you out there.

#Advice #POTS #MobilityAids #Rollator #WheelChair

BTW, it apparently took a long time for Porzingis to get this diagnosis, but a POTS-literate doctor could have diagnosed him in 10 minutes with a blood pressure cuff, a stopwatch, and a wall. It's called the NASA lean test and it is woefully underutilized.

#NBA #basketball #POTS

From ME Research UK:

Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. https://tinyurl.com/3f5sxbza

#longcovid @longcovid @mecfs @pots

From ME Research UK:

Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. https://tinyurl.com/3f5sxbza

#longcovid @longcovid @mecfs @pots

Postural orthostatic tachycardia syndrome in post-COVID-19 long-hauler patients is associated with platelet storage pool deficiency

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2025.1560120/full

"most #POTS patients have a platelet delta granule storage pool deficiency"

Image is screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @pots

Postural orthostatic tachycardia syndrome in post-COVID-19 long-hauler patients is associated with platelet storage pool deficiency

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2025.1560120/full

"most #POTS patients have a platelet delta granule storage pool deficiency"

Image is screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @pots

🚨 Reminder about groups on the gup.pe server

That domain expired so those groups are no longer valid. But you can follow groups on fedigroups.social

Here are 3 illness related groups that I follow (remove the slashes)

/@mecfs@fedigroups.social
/@longcovid@fedigroups.social
/@pots@fedigroups.social

The follower count is low compared to before so I thought folks might not have learned about issues with gup.pe groups

Boosts welcome! 😁

#MEcfs #LongCovid#POTS#ChronicIllness