Lmst

A few lobster pots in the boat park on Peveril Point, Swanage, Dorset.

#photography #monochrome #dorset #pots #fishing

http://dailyphoto.creativesplurges.com/2026/02/06/lobster-pot/

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>>

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“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

🧵
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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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.

ME/CFS - Über 650.000 Betroffene allein in Dtl., mit hoher Dunkelziffer.

Die Abkürzung steht für "Myalgische Enzephalomyelitis / Chronisches Fatigue Syndrom" - die schwerste Form von LongCOVID.
Kann man aber auch nach Grippe, Epstein Barr, Pfeifferschein Drüsenfieber, Borreliose, allgemein postakuten Infektionssyndromen PAIS, seltener durch einige wenige Medikamente, OPs oder
craniocervicaler Instabilität bekommen.

Kommt nicht selten mit Unmengen weiterer Erkrankungen einher, wie z.B. #MCAS (Mastzellaktivierungssyndrom) oder #PoTS (posturales orthostatisches Tachykardie-Syndrom)

#MEcfs #PAIS
0 Therapien
0 zugelassene Medikamente

https://www.ndr.de/ndr2/epg/NDR-2-Spezial,sendung-48920.html

Es ist fast halb 2. Ich bin heute aufgestanden, hab mich gewaschen, das Pflaster gewechselt, Pause gemacht mit kaffee, dann Haare gewaschen, dann halbe Stunde geschlafen weil erschöpft. Dann war ich im Hofladen und bei Aldi, danach kurz Apotheke. Nach Hause erstmal flach hingelegt #Pots . Dann gekocht, auch schon für Thomas heute Abend mit, gegessen und sogar die Spülmaschiene ausgeräumt.
Ich bin vollkommen im Arsch.
Aber, das habe ich geschafft, trotz #Fibro und #Fatigue. Es ist sonst gar kein Ding diese Dinge zu erledigen, aber so fühlt sich das wie Hochleistungssport an.
Ich glaube wirklich, dass ich zusätzlich wieder Anämie habe.
Na ja, aber immerhin habe ich das alles geschafft. Trotz der derzeitigen Verfassung. 💪❣️

· The Food and Drug Administration (FDA) has granted expanded access to the stem cell infusion RegeneCyte for #LongCOVID
· Long COVID isn’t being consistently captured around the world due to differences in sociological factors, diagnostic tools, and healthcare access
· A phase two trial for Long COVID-associated postural orthostatic tachycardia syndrome (#POTS) is testing a product called 2-hydroxybenzylamine (2-HOBA)

https://thesicktimes.org/2026/02/03/research-updates-february-3/

#ResearchUpdates #COVID

@tomkindlon @mecfs

Classic cartoon showing how even the everyday activities (eat, get dressed, shower) can be "out of reach" for ME/CFS patients. Thanks for sharing this one again!

#MEcfs #LongCovid #POTS #Fibromyalgia #ChronicIllness #NEISvoid #Disability

Happy Birthday! 🎉 Die BLUP BBS ist nun 31 Jahre online.

1995 startete alles mal mit einem alten, ausrangiertem Tower PC und einer gelben Spraydose. 31 Jahre später gibt es die ursprüngliche Hardware zwar nicht mehr, aber die Software, das Herz und die Seele der BLUP sind noch immer da. Alles ein bisschen grauer und ruhiger geworden, aber noch lange nicht tot.

Nach 31 Jahren gehört die Mailbox zu einer der letzten ihrer Art.

#mailbox #blupbbs #bbs #pots

#ThereForME @theguardian.com@bsky.brid.gy @davetuller1.bsky.social@bsky.brid.gy @cgatist.bsky.social@bsky.brid.gy #ME #Chronicillness #LC #PEM #POTS #LivesWeCannotLive #MissingMillions @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @rcgpt.bsky.social@bsky.brid.gy

The cartoon series is called ‘This Week in Disbelief. Wise Cat is sitting next to the heading

There is one image - it is of a crumbling house sitting on a mountain of bodies. A dilapidated sign saying ‘Wessely School’ is hanging in midair

The title says - “As the sun sets on the BPS model of #ME … it’s foundations are revealed”

The cartoon maker is #FanningTheFlames

Another week, another opportunity for psychiatry to recognise #ME as a serious post-viral illness #ThereForME @theguardian.com@bsky.brid.gy @davetuller1.bsky.social@bsky.brid.gy #ME #LongCovid #Lyme #POTS #PEM @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy @ashleydaltonmp.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy

The cartoon series is called ‘This Week in Disbelief.

There is one image - it is of a crumbling house sitting on a mountain of bodies

The title says - “As the sun sets on the BPS model of #ME…it’s foundations are revealed”

The cartoon maker is #FanningTheFlames

Wow just had a very worrying heart rhythm when I sat back down after quickly getting up. Holy shit, was beginning to think I was stuck with a bizarre arrhythmia forever 💀 love me some #POTS #disabled

Ok, this one is giving me big feelings, so I guess bear that in mind fellow POTSies? The whole "40 years of symptoms massively improved by a couple of half hour procedures" thing. But it's worth a listen.

> The POTScast: Vascular surgeons Robert Hacker and Deena Chihade on venous compressions, stenting, and POTS

Episode webpage: https://the-potscast.castos.com/episodes/vascular-surgeons-deena-chihade-and-robert-hacker-on-venous-compressions-and-stenting

#POTS #NEISvoid

I’m totally in a shit ton of pain and am going to flair tomorrow for probably a couple or more days, but you know it will be totally worth it because I’m at a party with friends and am having an amazing time. 🥳🎉😊😀🥲😩#chronicpain #dysautonomia #pots #mentalhealh

February online events hosted by the Bateman Horne Center:

1) Support group on Tues, Feb 3

https://batemanhornecenter.org/event/online-support-group-112/

2) "Coffee" with a Clinician - Wed Feb 11

https://batemanhornecenter.org/event/coffee-with-a-clinician-2/

3) Support group on Tues, Feb 17

https://batemanhornecenter.org/event/online-support-group-113/

More details and registration info at links.

@mecfs @longcovid

#MEcfs #LongCovid #POTS #ChronicIllness #Support

Upcoming online events, February 2026.

Tues, Feb. 3:
Support group, 1 PM - 2 PM Mountain Standard Time
"Chronic Illness: Facing Limits and Losses (Moving through Grief)"

Wed, Feb. 11:
"Coffee" with a Clinician, 10 AM - 11 AM Mountain Standard Time
"Assessing Impaired Function (Clinical Evaluation)"

Tues, Feb. 17:
Support group, 1 PM - 2 PM Mountain Standard Time
"Coping with Depression and Emotional Overload"

Register now: BatemanHorneCenter.org/Events

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

I ran out of spoons about 3 hours ago and I'm very quickly running out of fucks to give. #POTS

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy

The cartoon series is called ‘This Week in Disbelief’

There is an image of an angry woman with a megaphone. She is shouting ‘THE LIMITATION IN #ME IS NOT IN WHAT I CAN DO, IT’S IN WHAT I CAN RECOVER FROM’

The cartoon maker is #FanningTheFlames

Holy shit, as somebody with #LongCovid, brain fog, daily migraines, #POTS, and unexplained pelvic pain, I am currently going 🤯 at this article:
https://disabled.social/@3TomatoesShort/115976273977045007

#pots

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