irishmecfsassoc.bsky.social
Irish ME/CFS Association
@irishmecfsassoc.bsky.social
3.5K followers 290 following 820 posts
Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association NB: Posts should not be considered advice Registered Charity Number 20100254 CHY 22039 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also
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irishmecfsassoc.bsky.social
Irish ME/CFS Association @irishmecfsassoc.bsky.social · 5d
Recently we donated €33,000 from our research fund to various worthy research causes following a vote among our members.

This is the ongoing total.

Thanks to all our donors & fundraisers plus others who have supported us in any way
#TogetherWeAreStronger
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
Irish ME/CFS Association logo has now given €392,000 from its research fund to the following logos for ME Research UK; Invest in ME Research; Solve ME/CFS Initiative; the Open Medicine Foundation; the CFS Research Foundation; Cure ME biobank; photo of Dr Keith Geraghty
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Reposted by Irish ME/CFS Association
georgemonbiot.bsky.social
George Monbiot @georgemonbiot.bsky.social · 1d
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
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georgemonbiot.bsky.social
George Monbiot @georgemonbiot.bsky.social · 1d
In the firing line, as ever, are the UK’s hundreds of thousands of ME/CFS patients. As a practitioner once remarked, “the bastards don’t want to get better”. If there is one characteristic all the ME/CFS patients I’ve come across have in common, it is a desperation to get better.
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georgemonbiot.bsky.social
George Monbiot @georgemonbiot.bsky.social · 1d
They desperately want to be able to work, to socialise, to experience all the other joys of life. But because the condition is so poorly understood, they have been repeatedly treated as if they were “malingerers” or “hysterics”. Which suits the government just fine.
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georgemonbiot.bsky.social
George Monbiot @georgemonbiot.bsky.social · 1d
Many patients have been forced into useless and sometimes dangerous “buck up” treatments such as Graded Exercise Therapy and CBT, in some cases long after these “treatments” have been debunked. The most eminent advocate of these treatments? Professor Sir Simon Wesseley.
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
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Discussion on Science for ME @scienceforme.bsky.social forum:
www.s4me.info/threads/deve...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Development and validation of blood-based diagnostic biomarkers for [ME/CFS] using EpiSwitch®… 2025, Hunter et al.
Development and validation of blood-based diagnostic biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS using EpiSwitch® 3-dimensional genomic regulatory immuno-genetic profiling...
www.s4me.info
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
Press release for new UK study:
"Revolutionary blood test for ME / Chronic Fatigue [Syndrome] unveiled"
www.uea.ac.uk/about/news/a...

Paper:
translational-medicine.biomedcentral.com/articles/10....

Some experts comment:
www.sciencemediacentre.org/expert-react...

#MEcfs #CFS #PwME

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Revolutionary blood test for ME / Chronic Fatigue unveiled By: Communications Wednesday 8 October 2025 Share X (formerly known as Twitter) Share Facebook Share LinkedIn Share An arm with a heart shaped plaster at the inside elbow. With 96 per cent accuracy, a new blood test offers hope for those living with chronic fatigue syndrome - which is often misunderstood and misdiagnosed. Scientists at the University of East Anglia and Oxford Biodynamics have developed a high accuracy blood test to diagnose Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME/CFS). The debilitating long-term illness affects millions worldwide - including over 400,000 sufferers in the UK - but is poorly understood and has long lacked reliable diagnostic tools.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
Got my postal vote for the upcoming Irish presidential election.

I thought I would plug this free option again. There are quite a lot of votes in Ireland between the
local/European/presidential/general elections & referendums.

#Disability #spoonie #spoonies #chronicillness #mecfs #ireland
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 23h
I've heard a number of people praise this. I normally don't share things that cost money but this is within the budget of many.

Next Introductory ME/CFS & #Fibromyalgia Course

Registration closes on January 12, 2026. Cost: $20.00.

www.cfsselfhelp.org/online-cours...

#MEcfs #CFS #Fibro #FMS #FM
Introductory Course | ME/CFS & Fibromyalgia Self-Help
www.cfsselfhelp.org
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 20h
"Climbing Back from Severe ME/CFS"

www.cfsselfhelp.org/library/clim...

Note: this is not a recovery story but an article on living with the illness

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Climbing Back from Severe ME/CFS Print Email a Friend By Pris Campbell Note: Pris has been a member of our community since 2012. For samples of the writing she describes in the article, see her website, Poetic Inspirations. I woke up one day in 1990 with a severe case of what was later to be diagnosed as Chronic Fatigue Syndrome (ME/CFS). This is the story of how I slowly climbed out of the deep hole I fell into and also how I found a new identity through writing. How CFS Changed My Life My health had been good up to the day I got sick. I had a career as a clinical psychologist. In terms of physical activity, I swam and sailed, and biked daily. All that changed suddenly the day in 1990 when I woke up very sick. I couldn’t keep my balance when I got out of bed and keeled over. I shook violently inside as if a vice was tightening around my head, made intolerably worse when exposed to light or sound. My muscles would become rigid and my eyes jerked back and forth. I had periodic tugging sensations in my head that would pull me into coma-like sleeps, after which all of my symptoms were even worse.
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Reposted by Irish ME/CFS Association
davetuller1.bsky.social
David Tuller @davetuller1.bsky.social · 20h
Berkeley's crowdfunder has reached 5% of the goal after its first day, with 49 donors! This pace won't keep up, but it's a decent start. Thanks to all past, current and future supporters!
crowdfund.berkeley.edu/project/47768
David Tuller's Trial by Error Fall 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!
crowdfund.berkeley.edu
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Reposted by Irish ME/CFS Association
Karississima @boydstra.bsky.social · 19h
So good.
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 20h
"Climbing Back from Severe ME/CFS"

www.cfsselfhelp.org/library/clim...

Note: this is not a recovery story but an article on living with the illness

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Climbing Back from Severe ME/CFS Print Email a Friend By Pris Campbell Note: Pris has been a member of our community since 2012. For samples of the writing she describes in the article, see her website, Poetic Inspirations. I woke up one day in 1990 with a severe case of what was later to be diagnosed as Chronic Fatigue Syndrome (ME/CFS). This is the story of how I slowly climbed out of the deep hole I fell into and also how I found a new identity through writing. How CFS Changed My Life My health had been good up to the day I got sick. I had a career as a clinical psychologist. In terms of physical activity, I swam and sailed, and biked daily. All that changed suddenly the day in 1990 when I woke up very sick. I couldn’t keep my balance when I got out of bed and keeled over. I shook violently inside as if a vice was tightening around my head, made intolerably worse when exposed to light or sound. My muscles would become rigid and my eyes jerked back and forth. I had periodic tugging sensations in my head that would pull me into coma-like sleeps, after which all of my symptoms were even worse.
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 16h
"Six things I learned from my time in a wheelchair" by a woman with ME and POTS

chronicallycraptastic.com/six-things-i...

#MEcfs #POTS #Disabled #Disability #chronicillness #Spoonies
#Spoonie
Six things I learned from my time in a wheelchair Nov232023 Blog Spread the love Photo of a woman in a wheelchair on a bridge overlooking a river or something similar Wheelchairs are shit. No, wait, let me rephrase that: Wheelchairs are absolutely fantastic and afford disabled people a world of independence and mobility they would otherwise be stripped of. But – you knew that already.
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Reposted by Irish ME/CFS Association
kjohnstone.bsky.social
Katie J. @kjohnstone.bsky.social · 1d
New Substack post about HEPA air purifiers. They're good, but not quite as good as the advertising might lead you to expect.
mecfs.substack.com/p/do-hepa-ai...
Do HEPA air purifiers really remove 99.95% of dangerous particles from the air?
The 99.95% claim is technically true, but misleading. HEPA air purifiers are good! But not that good.
mecfs.substack.com
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 13h
From the US:

Note that there is a typo:
"The mean change in the intervention group ... did not reach the threshold for utility (not futility)."

www.tandfonline.com/doi/abs/10.1...

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC #PASC
Preliminary evaluation of a cognitive rehabilitation intervention for post-COVID-19 cognitive impairment: A pilot randomized controlled trial — Jacqueline H. Becker et al. "The mean change in the intervention group compared to the controls in measures of processing speed, learning, memory, language, and of executive function did not reach the threshold for futility."
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 13h
Free 15-page booklet, "Disclosure And Discrimination In The Workplace: A Guide For People With Long-Term Health Conditions"

astriid.org/news/disabil...

Publication from the UK but a lot of the information is likely applicable in many countries.

#chronicillness #ChronicallyIll #Spoonies #Spoonie
Astriid logo If you have a long-term health condition, you may encounter disability discrimination during your working life. From being excluded during recruitment to difficulties securing workplace adjustments and climbing the career ladder, people can face multiple barriers during their working day. It can be especially difficult to advocate for yourself when you have a long-term health condition, so this resource details how to tackle disability discrimination while taking care of yourself, and how to access additional support.
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 13h
(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & long COVID patients must qualify as 'medically frail'" (Oct 7, 2025) by Laurie Jones of @meactnet.bsky.social

www.medpagetoday.com/opinion/seco...

3 min read

#MEcfs #LongCovid #chronicillness #Disabled
MedPage Today logo Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS and long COVID patients must qualify as "medically frail" by Laurie Jones October 7, 2025 • 3 min read
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docseuss.bsky.social
doctober @docseuss.bsky.social · 12h
i mean, they already do. i didn't get medicaid in kansas (kancare) because the doctor dropped his pen and asked me to pick it up, which I did from my chair, as it had rolled over to me, and he said I had 'demonstrated an ability to pick up heavy objects repeatedly' or somethin
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 13h
(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & long COVID patients must qualify as 'medically frail'" (Oct 7, 2025) by Laurie Jones of @meactnet.bsky.social

www.medpagetoday.com/opinion/seco...

3 min read

#MEcfs #LongCovid #chronicillness #Disabled
MedPage Today logo Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS and long COVID patients must qualify as "medically frail" by Laurie Jones October 7, 2025 • 3 min read
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 2d
"New Year, Trashing of Old Years … and Sheep’s Bum Holes" by a mother with #severeME

meglobalchronicle.wordpress.com/2025/01/24/n...

One description I saw:
"a raw unfiltered commentary of feelings at another year gone by, however, acknowledgement we can’t know joy unless we know suffering"

#MEcfs
New Year, Trashing of Old Years … and Sheep’s Bum Holes Gepubliceerd op 24 Januari 2025 Trashing 2024 So there I was, merrily scrolling through Facebook on NYE enjoying people’s recaps about how their year had been, when I noticed a few posts about how ‘2024 can just do one’ (fuck off in other words) and ‘Bring on 2025!’ It’s nothing new. I see the same tossing of the old year out with the trash every NYE with statements about how rubbish it was, laced with bravado and hope for the year ahead. And I get it, I really do. Those who know me know I am no stranger to life dealing me some pretty shitty hands. (As in circumstances. I like to think my actual hands are quite nice. Ten fingers and all).
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emergeaustralia.bsky.social
Emerge Australia @emergeaustralia.bsky.social · 2d
Join the #ausmebiobank in advancing #MECFS and #longCOVID research.
If you're in QLD, NSW or VIC with these conditions, or a healthy volunteer, donate blood today.
Find out more 👉 zurl.co/kSU0r

#MECFSResearch #DonateForScience #MedicalResearch #ThankYouDonors
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Reposted by Irish ME/CFS Association
emergeaustralia.bsky.social
Emerge Australia @emergeaustralia.bsky.social · 3d
📢 Participants needed! The GLOW Trial is studying gut-based therapy for Long COVID at Uni Hospital Geelong. If you’re 18–65 with moderate–severe symptoms, you may be eligible.

Learn more 👉 [email protected] | 📞 (03) 4215 3078
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
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bsky.app/profile/dave...
davetuller1.bsky.social
David Tuller @davetuller1.bsky.social · 1d
Berkeley's fall crowdfunder for Trial By Error is now up!
crowdfund.berkeley.edu/project/47768
David Tuller's Trial by Error Fall 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!
crowdfund.berkeley.edu
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Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Adam @abrokenbattery.bsky.social · 4d
On LBC, callers Ann and Annie told Natasha Devon that the rise in long-term sickness is linked to long Covid — and compared the lack of support to what people with #MECFS have faced for decades (10 mins)

youtu.be/BoVpKmsTNFY?...
Natasha Devon - Long-term sickness call in
YouTube video by Broken Battery
youtu.be
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Reposted by Irish ME/CFS Association
batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 6d
Upcoming in Oct! 💙
☕ Oct 8 – Coffee with a Clinician: Navigating Clinical Uncertainty
💬 Oct 14 – Support Group: Healthcare & Self-Advocacy
💬 Oct 21 – Support Group: Parenting w/ Chronic Illness

Free & open to all. Register: https://bit.ly/48DiM7Q
Upcoming events in October 2025 by Bateman Horne Center: Coffee with a Clinician on Oct 8, and Support Groups on Oct 14 & 21.
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Reposted by Irish ME/CFS Association
investinmeresearch.bsky.social
UK Charity Invest in ME Research @investinmeresearch.bsky.social · 1d
Invest in ME Research Summer Student Bursaries 2025 - Addendum

The IiMER bursaries offered hands-on experience in cutting-edge research focusing on ME

www.investinme.org/iimer-newsle...
#research #MedEd#mecfs #InvestinMEresearch
Banner showing young researcher publicisng the Invest in ME Research Summer Student bursaries for 2025
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Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
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"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence."

#SevereMECFS #SevereCFS #VerySevereME
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