Irish ME/CFS Association
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irishmecfsassoc.bsky.social
Irish ME/CFS Association
@irishmecfsassoc.bsky.social
3.6K followers 290 following 850 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 · 9d
#Ireland

Our Christmas card page is now up irishmecfs.org/store

Wide selection: 18 packs with English or English & Irish verses

10% of gross amount goes to our research fund.

Shops don't get a cut so more goes to charity

Reposts welcomed

#MEcfs #PwME
All profits from the Christmas cards go to the Irish ME/Chronic Fatigue Syndrome Association (an all-volunteer organisation) with a cartoon image including a Santa Claus and presents
irishmecfsassoc.bsky.social
Irish Examiner letter from one of our members

She highlights
-difficulty she had in obtaining a payment
-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)

www.irishexaminer.com/opinion/your...

#MEcfs #CFS #PwME
Letters to the Editor: Disability allowance system has let me down A reader says an internal audit needs to be carried out on the disability allowance sector Letters to the Editor: Disability allowance system has let me down Unlike jobseeker’s benefit, disability allowance is means tested. Thu, 27 Nov, 2025 - 01:00    In response to Paul Hosford’s article — ‘Disability allowance appeals surge as thousands of rejected applications later approved’ ( Irish Examiner, November 25) — I too would love to see an internal audit carried out on the disability allowance sector regarding their appeals process.
November 27, 2025 at 3:26 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
"How to Help With ME/CFS and Long COVID Disability Claims"

www.medscape.com/viewarticle/...

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

#MEcfs #LongCovid #CFS #PwME
Medscape logo Medscape Medical News Conference News IACFS/ME 2025 How to Help With ME/CFS and Long COVID Disability Claims Miriam E. Tucker November 26, 2025 Detailed notes, objective testing, and legal assistance if necessary are the keys to obtaining disability benefits for patients who are unable to work due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID.
November 26, 2025 at 5:06 PM
Reposted by Irish ME/CFS Association
drcsp.bsky.social
Physicians and other medical providers: our notes are being used for purposes they weren’t designed for and how we write them can have a profound impact on whether disabled patients are granted disability support
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 1d
"How to Help With ME/CFS and Long COVID Disability Claims"

www.medscape.com/viewarticle/...

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

#MEcfs #LongCovid #CFS #PwME
Medscape logo Medscape Medical News Conference News IACFS/ME 2025 How to Help With ME/CFS and Long COVID Disability Claims Miriam E. Tucker November 26, 2025 Detailed notes, objective testing, and legal assistance if necessary are the keys to obtaining disability benefits for patients who are unable to work due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID.
November 26, 2025 at 5:35 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
From the US

Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries

dx.doi.org/10.1093/ofid...

Screenshot from latest Science for ME weekly update

#LongCovid #Covidlung
Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries: Results From the Chronic Impairment With Pulmonary Symptoms (ChIPS) Sub-study — Goertzen et al. "Overall, this study demonstrates both subjective and objective differences between those with ongoing dyspnea following COVID-19 infection that are not explained by standard investigations typically ordered in clinical care for chronic dyspnea."
November 27, 2025 at 1:42 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
From China

Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#LongCovid #Covidlung
Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID: A one-year study using phase-resolved functional lung (PREFUL) MRI — Ouyang et al. "We found ventilation defects normalizing by six months, while perfusion defects persisted for up to one year. Severe perfusion defects at the acute phase were associated with a higher risk of long COVID, persistent dyspnea, and fatigue."
November 27, 2025 at 1:48 AM
irishmecfsassoc.bsky.social
One week to go
#MEcfs #PwME
irishmecfsassoc.bsky.social Irish ME/CFS Association @irishmecfsassoc.bsky.social · 10d
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, December 3.

Hopefully we’ll see some of you there irishmecfs.org/blog/wednesd...

Carers/parents/similar welcome.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
 Informal ME/CFS social meet up in Dublin 2:30 PM - 4 PM Wednesday, December 3 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome Buy your own food +/or drink Register for any updates (in case cancelled): tomkindlon@irishmecfs.org Aine Monahan & Tom Kindlon who are meeting for lunch Irish ME/CFS Association for Information. Support & Research logo
November 26, 2025 at 2:09 PM
Reposted by Irish ME/CFS Association
heatherhogan.bsky.social
Watching, digesting, processing, contextualizing, & writing about these conferences is intense work, but @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social never miss a beat. They're consistently doing journalism that no one else is doing.

Help @thesicktimes.org keep going? bit.ly/49AUf4t
November 25, 2025 at 6:14 PM
Reposted by Irish ME/CFS Association
actionforme.bsky.social
1/3

📢 Rescheduled: APPG on ME severe ME enquiry evidence session

📆 Wednesday, 10 December

⏰ 3.30pm – 5.30pm

Invite your local MP to attend 👇

actionforme.eaction.org.uk/appg-severem...

#pwME #SevereME #APPG

⬇️
Graphic featuring the Houses of Parliament under a blue sky. Overlaid text reads “Ask your MP to attend!” with an envelope icon. Below, a green banner says “Rescheduled: APPG on ME’s severe ME enquiry evidence session.” Logos for Action for ME, the ME Association, and the APPG on ME appear at the top.
November 25, 2025 at 11:00 AM
Reposted by Irish ME/CFS Association
actionforme.bsky.social
Yesterday, MPs gathered in Westminster Hall to debate government support for people with ME and what needs to change. We’ve pulled together a summary of the key points, actions, and commitments discussed, using AI to assist in summarising the Westminster Hall debate transcript.
November 20, 2025 at 2:50 PM
Reposted by Irish ME/CFS Association
physiosforme.bsky.social
🚨New survey alert 🚨

The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME

All information can be found on the landing page here.

www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 18, 2025 at 7:02 PM
Reposted by Irish ME/CFS Association
cambridgegill.bsky.social
A summary of the Westminster Hall debate last week with (UK) MPs challenging the government's systemic indifference to #Pw/ME (and de facto, all energy limiting conditions). Thank you @tomkindlon.bsky.social
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 2d
ME Research UK:

Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48

#MECFS #PwME #CFS
Photo of the UK parliament
November 25, 2025 at 6:42 PM
Reposted by Irish ME/CFS Association
emergeaustralia.bsky.social
Healthy volunteers signing up to the #AusMERegistry & donating blood to the #ausmebiobank give researchers the vital comparison data they need to uncover the biology behind #mecfs & #longcovid and discover effective treatments
👉 zurl.co/W6BsH zurl.co/YEf22
A male in a navy t-shirt sitting in a chair with a woman in a pale t-shirt with her arms around him. The woman has a bandage on her arm showing how she just donated blood. Text "Join the AusME today: From one small act comes big hope." The AusME and Emerge Australia logos are on the tile.
November 19, 2025 at 9:00 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Segment from WELT (German TV) featuring Federal Research Minister Dorothee Bär discussing Germany’s National Decade Against Post-Infectious Diseases - €500 million for research including #MECFS and #LongCOVID. (English Subtitles - 3 mins)

youtu.be/f84TAp3D_Ng?...
Germany’s National Decade Against Post-Infectious Diseases (€500m Research Plan)
YouTube video by Broken Battery
youtu.be
November 24, 2025 at 10:09 AM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
November 22, 2025 at 6:15 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Former Team GB rower and #longCOVID campaigner @oonaghcousins.bsky.social spoke to Sky News in response to the COVID Inquiry. She highlighted how long-term illness was foreseeable and why a proper national strategy is urgently needed. Aired on 20/11/25 (5 mins).

youtu.be/-qZHg9PsE4c?...
Former Team GB Rower Oona Cousins Responds to the COVID Inquiry on Sky News
YouTube video by Broken Battery
youtu.be
November 22, 2025 at 4:43 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
November 22, 2025 at 11:23 AM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
BBC Radio Somerset (12 mins) Charlie Taylor speaks to Julie and John Heath about their family, where three out of four members have been diagnosed with #MECFS — they discuss how the condition affects daily life and the profound impact on their family.

youtu.be/t-eIzxqmNWY?...
BBC Somerset - 3 out of family of 4 diagnosed with ME/CFS
YouTube video by Broken Battery
youtu.be
November 22, 2025 at 8:06 AM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
New from the The Sick Times

Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise

‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’

thesicktimes.org/2025/11/21/l...
Key points from the article
November 21, 2025 at 5:54 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
BBC Points West ran a very short 20-second clip on yesterday’s Westminster debate. Local MP Tessa Munt called for greater NHS support and investment for people with #MECFS. Unfortunately the segment used “extreme tiredness” to describe the main symptom.
November 21, 2025 at 5:00 PM
Reposted by Irish ME/CFS Association
mecfsresearch.bsky.social
Big step for people with #mecfs & #LongCovid in Germany: the BMFTR announces a “National Decade on Post-Infectious Diseases” with long-term research funding and a focus on diagnostics & treatments. #mecfsresearch #research
a man standing in front of a blue background a blue oval with white text
November 14, 2025 at 3:10 PM
Reposted by Irish ME/CFS Association
meactnet.bsky.social
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.

An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
A image showing the name of the publication at the top, The Sick Times, and then a subhead that reads: "Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise." And then a image of a woman bent over on her bed with her hair flowing onto the ground - everything is blue. At the bottom of the image, it reads: "In the Press. #MEAction Explains the Harms of GET for Long COVID.
November 24, 2025 at 10:12 PM
Reposted by Irish ME/CFS Association
meactnet.bsky.social
Call to action: Congress has extended Telehealth until January 31,2026.

This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.

Call now using our call script: www.meaction.net/telehealth

#Telehealth #PwME #MECFS #LongCovid
Text-based graphic in red and white. Simple graphics in each corner include bullhorn, Capitol building, mobile phone, and #MEAction logo. Text: Call Congress now! Make telehealth coverage permanent! We provide a call script to use!
November 19, 2025 at 9:27 PM
Reposted by Irish ME/CFS Association
davetuller1.bsky.social
Why do these people keep promoting exercise studies with reported benefits that do not reach the threshold for clinical significance? Here's another one of these, from @jamanetworkopen.com: virology.ws/2025/11/21/t...
Trial By Error: Another Exercise Trial with Clinically Insignificant Findings | Virology Blog
By David Tuller, DrPH A recent study from JAMA Network Open, called “Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial,” dem ...
virology.ws
November 23, 2025 at 8:20 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Evidence for a severe cognitive subgroup in a comprehensive neuropsychological Post-COVID-19 syndrome classification

www.nature.com/articles/s41...

Screenshot from latest Science for ME weekly update

#LongCovid #COVIDBrain #NeuroPASC
Evidence for a severe cognitive subgroup in a comprehensive neuropsychological Post-COVID-19 syndrome classification — Balz et al. "Within this unique clinical cohort of subjectively impaired PCS subjects after COVID-19, we hereby defined a specific 7.5% subgroup of severely cognitively impaired subjects (PCS SCI ). They provided a distinctly different cognitive profile on key cognitive domains, including attentional, memory, and executive function, based on cognitive tests for which group differences were not significantly influenced by depression, anxiety, and fatigue."
November 26, 2025 at 1:40 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
From Germany:

"this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."

link.springer.com/10.1007/s004...

Screenshot from Science for ME update

#LongCovid #COVIDBrain
Cognitive impairment, depression, and fatigue in post-COVID and post-vaccination syndrome: a large-scale cross-sectional study — Hanc et al. "this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."
November 26, 2025 at 1:47 AM