Lmst

POTS boosted:

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!

Screenshot from February 2026 AMMES newsletter

https://www.annfammed.org/content/23/6/570

#chronicillness #Spoonie #MEcfs #CFS #POTS #LongCovid #hEDS #CCI @mecfs @longcovid @pots

One hand holding another hand in a supportive way

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!
My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my role as caregiver in the same way I approach my day job leading social science research: reading the literature, carefully observing her condition, and developing hypotheses about her conditions and how they might be treated. I now have more than 7 years of longitudinal observation—a wealth of data—but no easy way to share with the medical research community the hypotheses these observations have engendered and my ideas about how to productively structure future research to accelerate progress toward treatments for her and others like her.
Read more here>>

POTS boosted:

3/

“The work has to continue, the messy, mundane, bureaucratic and deeply human work: documenting symptoms, pushing for screening and access, training clinicians in #PESE / #PEM and dysautonomia, funding longitudinal research, and insisting that care be co-designed with the people who will use it”

#mecfs #longcovid #pots
@mecfs @longcovid @pots

POTS boosted:

2/‬

‪"The point is not that science doesn’t matter (it does, very much) but that the path from lived experience to research to care can be bidirectional."‬

‪#PostCovid #PwME‬ #PostCovid19 #CFS #epatient #epatients #chronicillness
@mecfs @longcovid @pots

POTS boosted:

🧵
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

1/

Long COVID Began with “Something’s Still Not Right”
Private messages became public grief, then public science.
Abby
Nov 02, 2025
People started whispering into feeds and group chats in spring 2020: “I’m not shaking this.” “My brain won’t settle.” “The fatigue is different.” They didn’t wait for an echo from a lab. They named their condition in real time, using the tools they had (hashtags, Facebook groups, Reddit threads) and in the process turned their private experience into a shared language. That’s where the term Long COVID came from. Not a headline, not a medical journal, but people trying to make their own reality legible.

That origin matters because it tells us something essential about illness and authority. We often treat lived experience as the thing to be explained rather than the starting point and grant legitimacy only after a study, a funding stream, or a guideline validates what people have been saying for months or years. Long COVID has flipped the script, and the fallout has been instructive, uncomfortable, and clarifying.

POTS boosted:

From #MEAction

"Keep the Light - Community Gathering"

https://www.meaction.net/event-details/keep-the-light-community-gathering

Sunday, February 1st
12 pm Pacific
2 pm Central
3 pm Eastern
8 pm GMT

Registration link =
https://us06web.zoom.us/meeting/register/8SCzby6ySeinbHBwYNyHzQ#/registration

(shows time in your time zone)

@mecfs
@longcovid
@pots

#MEcfs #LongCovid #POTS #ChronicIllness #Community

POTS boosted:

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

Impact of COVID‑19 infection on subsequent prescriptions of autonomic dysfunction pharmacotherapy: a nationwide propensity‑score‑matched Cohort study in Japan — Daisuke Miyamori and Masanori Ito
"COVID-19 infection shows significant association with increased autonomic dysfunction pharmacotherapy initiation, with a 36% rise in prescriptions over 8 months."

POTS boosted:

@tomkindlon @mecfs @longcovid @pots now I always sit in the shower or lie down except at the very end. I put a plug in and have a shower/bath. I try to wash a couple areas like feet daily but otherwise it can wait.

POTS boosted:

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

Showers Shouldn’t Cost Your Energy
You know, showers are deceptively hard.
Abby
Oct 26, 2025

Showers are hard. Not just inconvenient, not just “ugh, another thing on the list,” but hard in a way that touches everything: your nervous system, your muscles, even the quiet rhythm of your breathing. The kind of hard that hits every nerve ending and every muscle fiber because your body is already stretched thin, like a rubber band that’s been left taut for far too long. If you’re living with Long COVID, ME/CFS, POTS, other energy-limiting conditions, or just heightened sensory sensitivity in general, what feels like a small, everyday act to most people can become a deeply demanding negotiation with your own body. It’s not about discipline, or laziness, or even “trying harder.” It’s about energy: the subtle currency your body spends on every movement, every sensation, every drop of water cascading over skin that’s already carrying too much.

POTS boosted:

New US research that also included a #hEDS comparison group:

Shared autonomic phenotype of long COVID & myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0341278

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid #dysautonomia @mecfs @longcovid @pots

Introduction
Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are relatively common and disabling multisystem disorders that share overlapping features, including post-infectious onset and similar clinical manifestations such as brain fog, fatigue, muscle pain, and dysautonomia with orthostatic intolerance. These similarities suggest that Long COVID and ME/CFS may share common pathophysiological mechanisms, though the underlying mechanisms remain poorly understood, partly due to the difficulty in quantifying many of the symptoms.

Materials and methods
This retrospective study evaluated Long COVID and pre-COVID ME/CFS patients who completed autonomic testing between 2018 and 2023 at the Brigham and Women’s Faulkner Hospital Autonomic Laboratory. The evaluations included autonomic tests (Valsalva maneuver, deep breathing, tilt-table test, and sudomotor function) with capnography and transcranial Doppler monitoring of cerebral blood flow velocity (CBFv) in the middle cerebral artery, neuropathic assessment through skin biopsies for small fiber neuropathy (SFN), invasive cardiopulmonary exercise testing (ICPET), and laboratory analyses covering metabolic, inflammatory, autoimmune, and hormonal profiles.

POTS boosted:

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

Photo of somebody having a tilt table test

The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test
In ME/CFS patients with POTS during tilt testing with measurements of both the CO [cardiac output] and the CBF [cerebral blood flow], two different patterns were observed: 1) appr. two-thirds of patients had an almost 1:1 relation between the %CBF reduction and the %CO reduction. This CBF reduction is abnormal, as in healthy controls the CBF reduction for a given CO reduction varies between 1:3 and 2:3, and may indicate endothelial dysfunction with an inability of cerebral vessels to adequately dilate in the presence of a CO reduction. Appr. one-third of patients showed a limited reduction in CO together with a substantial increase in HR. In these patients, there was no relation between the CO and CBF reduction. These data suggest the presence of a hyperadrenergic response. If this mechanism is proven by norepinephrine levels, the CO is a robust measure to distinguish between hyperadrenergic and non-hyperadrenergic responses.
Read more here>>

POTS boosted:

How Invisible Chronic Illness Adds an Extra Burden to Life

https://www.psychologytoday.com/us/blog/turning-straw-into-gold/202511/how-invisible-chronic-illness-adds-an-extra-burden-to-life

She has ME/CFS herself but the article is not specific to any illness

#invisibleillness #chronicillness #ChronicPain #Spoonielife
#hiddenillness #Spoonies #Spoonie #ChronicallyIll #MEcfs
@mecfs @longcovid
#LongCovid #POTS @pots

Photo of Toni Bernhard J.D.
Toni Bernhard J.D.
Turning Straw Into Gold
Chronic Illness
How Invisible Chronic Illness Adds an Extra Burden to Life
Personal Perspective: Most people are uneducated about chronic pain and illness.
Updated November 29, 2025

POTS boosted:

@AnAutieAtUni @pots @mecfs @longcovid oh man. MCAS is something we need a lot more research on. I'm impressed at how you are managing.

POTS boosted:

Well, damnit. I can now stop saying “I’m not convinced I have MCAS” and swap this with “my body just made its first attempt to kill me for no reason, it’s most probably MCAS.”

And just as I was thinking this might mean I may not be in perimenopause, or peri may not be having much of an impact afterall, I read this link below all about peri and MCAS.

Very glad I am already doing a lot of the right things. However, I usually stop antihistamines over winter but was late to do that this winter. Only been off them a few weeks and well… back on them today!!!!! 😅

https://www.mastcellaction.org/womens-health-and-mcas
@pots @mecfs
@longcovid
#MCAS #POTS #perimenopause #pwME #MEcfs #ChronicIllness

POTS boosted:

"When Home Becomes a Healing Space" by an OT who specialises in ME/CFS & long Covid.

https://onelifelivedwell.substack.com/p/when-home-becomes-a-healing-space

This particular article is pretty general & suitable for people with lots of chronic illnesses

#chronicillness #Spoonie #MEcfs #LongCovid #ChronicIllnesses #Spoonies @longcovid @mecfs #POTS @pots

When Home Becomes a Healing Space
Designing environments that support energy-limiting conditions
Abby
Oct 19, 2025

If you live with Long COVID, ME/CFS, POTS, or other energy-limiting conditions, home isn’t just where you rest, it’s where you recover from the world.

For many, it’s one of the few places that feels even somewhat safe, a place where the constant stimuli, unpredictability, and demands of the outside world can soften, even just briefly. Unfortunately, safety doesn’t happen automatically. Our spaces either ask for energy or return it to us, and when your body is already working overtime, those subtle exchanges matter.

We want to shape an environment that doesn’t demand more from you than you can give, one that allows your body to exhale and lowers the background tension you might experience so that recovery has a chance to begin.

POTS boosted:

@tomkindlon @pots @longcovid @mecfs

I have this weird relationship with
my chronic illness where I spend
75% of my time trying to pretend it
doesn't exist and the other 25%
trying to explain that it DOES exist
to a bunch of people who don't
believe me.

POTS boosted:

"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

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

Elaine Rush •
Follow
Last updated: August 2, 2024
1.1K13

Photo of signs for restrooms

How many of you who have fibromyalgia or similar chronic illness sometimes feel like you’re judged for not being “disabled enough?”

POTS boosted:

Forgot to tag @pots

POTS boosted:

3/
@s4me update summary:

“Article about ambulatory wheelchair users, a response to a Wall Street Journal article that claimed people are pretending to need wheelchairs.
Mentions #LongCovid, #MECFS, & several other medical conditions as possible reasons for needing a wheelchair”

@mecfs @longcovid @pots

POTS boosted:

@me_valentijn @tomkindlon @mecfs @longcovid @pots they are often understaffed for people getting off the plane so it can be quite slow and it takes time to get wheelchairs there. I have found myself sitting on the floor waiting as they thought there were enough wheelchairs for me to get off the plane. And it was really hot due to the giant glass windows. But the staff themselves have been good and they're doing their best.

POTS boosted:

@tomkindlon @mecfs @longcovid @pots
From the article:
'But what about people who used a wheelchair to board and then walk off the plane unassisted—the alleged “divine intervention”? None of these articles reflected any understanding of the dynamics of how wheelchairs are distributed at airports, which impacts their usage. Airports make wheelchairs available in a special location near the check-in counters before boarding, but it can take a while for a wheelchair to be available at a specific gate upon arrival.

In my experience, as someone who usually depends on wheelchair transport at the airport, ambulatory wheelchair users often walk off the plane and then wait in the boarding area for a wheelchair. The “gotcha” videos of people “miraculously” walking off the plane may not follow them to their seat near the gate. Other passengers may not have time to wait, and have no choice but to walk to a connecting flight. The distance from the gate to the exit is typically shorter than from the entrance to the gate, and there’s no long security line.'

* * *

I've had a reserved wheelchair disappear while waiting to be last to exit the airplane (my non-asshole assumption is that someone else saw it and needed it). But then when I did exit I was standing there with nowhere to sit and had to toddle back on the airplane to wait in a seat near the door. If I'd been slightly less disabled or exhausted after a 10 hour flight, I probably would have shuffled toward the lounge to wait.

Airports tend to be designed a manner which is hostile to everyone who isn't young and fit. And that's an airport problem, not a lazy-people-these-days problem. But blaming people is certainly the cheaper and more convenient approach, and generates irresistible clickbait for feckless social media accounts 🙄

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