Irish ME/CFS Association
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irishmecfsassoc.bsky.social
Irish ME/CFS Association
@irishmecfsassoc.bsky.social
3.6K followers 290 following 840 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 · 4d
Social gatherings in Cork, Dublin 1, Kilkenny & Limerick (Irish ME Trust)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Have a Snack on ME Our next social gatherings will take place in CORK, LIMERICK, DUBLIN & KILKENNY. Full details as follows: CORK Barry’s of Douglas, Bar & Restaurant, Douglas, Cork. Monday 24th November - Time – 12.00pm (organised by Ashling) LIMERICK The Strand Hotel - Ennis Road, Limerick Wednesday 26th November - Time – 12.00pm (organised by Sarah) DUBLIN Leonardo Hotel (formerly Jury’s Inn) Parnell Street, Dublin 1 Wednesday 26th November - Time – 2.00pm (organised by Joan) KILKENNY Bistro Bar, Kilkenny River Court Hotel The Bridge John Street, Kilkenny, Wednesday 26th November - Time – 2.00pm (organised by Ailish) All are Welcome If anybody is interested in helping to arrange further locations, please contact info@imet.ie
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Definitely not a recommendation

Interpretation bias modification (CBM-I) for fatigue in long term health conditions-A feasibility study

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

Biological reasons for most of the fatigue in conditions like #MECFS (connected to PEM) need to be understood better

#PwME
Screenshot of abstract
November 23, 2025 at 2:49 PM
Reposted by Irish ME/CFS Association
erictopol.bsky.social
We've enrolled more than 700 participants (of 1,000 planned) in 3 weeks to a randomized trial for treatment of #LongCovid
scripps.edu Scripps Research @scripps.edu · 2d
Founder and director of the Scripps Research Translational Institute, @erictopol.bsky.social, and Julia Moore Vogel, co–principal investigator of the Long COVID Treatment Trial, were featured in @wired.com, sharing insights on a nationwide study testing GLP-1s for long COVID.
Weight-Loss Drug Zepbound Is Being Tested as a Treatment for Long Covid
GLP-1s are being studied for a wide range of conditions. Now, scientists will test whether their anti-inflammatory properties can help alleviate symptoms of long Covid.
ow.ly
November 23, 2025 at 7:09 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Science for ME weekly update description of this:

“From Genes to Proteins to Neuroinflammation:

Discussion of ideas behind ME/CFS including "an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed." #MEcfs #CFS #PwME
openmedf.bsky.social Open Medicine Foundation (OMF) @openmedf.bsky.social · 6d
In this interview, Dr. Jonas Bergquist and Dr. Alain Moreau talk about their main ideas behind #MECFS, including an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed.

👉 ow.ly/fUYM50XtwW1.
On the left is Dr. Moreau smiling and pointing to a colorful scientific poster filled with charts and text. On the right is Dr. Bergquist wearing a white lab coat and blue shirt. In the center overlaid text reads INTERVIEW.
November 23, 2025 at 11:59 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
The Sick Times @thesicktimes.org : Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise

thesicktimes.org/2025/11/21/l...

Experts say testing exercise is “money down the drain” and won’t advance understanding of Long COVID.

#LongCovid #PEM
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 24, 2025 at 12:03 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
UK Covid 19 Inquiry report reveals Government’s catastrophic failure to manage the pandemic.British Medical Association press release

Screenshot from latest Science for ME weekly update

www.bma.org.uk/bma-media-ce...

#Coronavirus #COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #CovidIsNotOver
UK Covid 19 Inquiry report reveals Government’s catastrophic failure to manage the pandemic. BMA press release "The report concludes that the UK governments responded far too slowly and complacently, leading to a mandatory lockdown and an estimated 23,000 avoidable deaths in England. It highlights severe governmental failings, including misleading claims of preparedness, ignored expert advice, and inadequate test-and-trace capacity."
November 24, 2025 at 1:47 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
UK ME Association: The questionnaries for the Clinical Assessment Tookit designed by Prof Sarah Tyson with MEA funding are now available in printable form and on an app

meassociation.org.uk/mea-cat/

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
UK ME Association The questionnaries for the Clinical Assessment Tookit designed by Prof Sarah Tyson with MEA funding are now available in printable form and on an app intended for use by people with ME/CFS and by NHS clinics. See coming events below for introductory webinars.
November 24, 2025 at 1:57 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
ME patient talks about his experience & researcher Olav Mella on the ongoing Daratumumab study in a magazine for the Norwegian Society of Graduate technical & Scientific Professionals

Google translation
www-tekna-no.translate.goog/magasinet/ma...

Screenshot from Science for ME update

#MEcfs #CFS
Norway Good article on ME in a magazine for the Norwegian Society of Graduate Technical and Scientific Professionals. Jørn Tore Haugen talks about his experience as an ME patient and researcher Olav Mella on the ongoing Daratumumab study.
November 24, 2025 at 2:07 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
"Progress on the pathway to long COVID treatments" - a brief article describes a 2-day workshop on four new drug trials that are entering the RECOVER clinical trials for long COVID.

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

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Nature Immunology "Progress on the pathway to long COVID treatments" - a brief article describes a 2-day workshop on four new drug trials that are entering the RECOVER clinical trials for long COVID. The outcome of a safety & tolerability study for LDN was reported, Peluso described the REVERSE-LC baricitinib trial, while David Kaufman described his experiences using the GLP-1 agonist terzepatide in clinical practice.
November 24, 2025 at 2:15 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
Mucosal Viruses in ME/CFS: A Missing Piece of the Puzzle?

www.mdpi.com/1422-0067/26...

"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"

#MEcfs #PwME
www.mdpi.com
November 24, 2025 at 2:40 AM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
3/

I’ve heard people with ME say they react badly to monosodium glutamate (MSG)

#MSG
November 22, 2025 at 3:49 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
2/

"Glutamate, which is found in high levels in processed foods & also occurs naturally in some foods like tomatoes and mushrooms, is the most abundant excitatory neurotransmitter in the nervous system, where it is known to play a role in mediating pain."

#migraines #headaches
November 22, 2025 at 3:39 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
News Release 15-Nov-2025

Low-glutamate diet linked to brain changes and migraine relief in veterans with Gulf War Illness
www.eurekalert.org/news-release...

"raises the question of whether a low-glutamate diet could also benefit the wider population of migraine sufferers"

#GWI #migraine #headache
News Release 15-Nov-2025 Low-glutamate diet linked to brain changes and migraine relief in veterans with Gulf War Illness Reports and Proceedings Georgetown University Medical Center SAN DIEGO -- Veterans with Gulf War Illness experienced significant improvement in migraine symptoms after following a diet low in glutamate, a component of flavor enhancing food additives commonly found in processed foods, according to new research presented by Georgetown University and American University scientists. Brain scans also revealed decreased cortical thickness in patients on the diet — providing evidence, for the first time, that the improvement in symptoms was linked to measurable changes in the brain.
November 22, 2025 at 3:22 PM
Reposted by Irish ME/CFS Association
tomkindlon.bsky.social
US press release:
"Underlying cause of Gulf War illness confirmed in UTSW study"

"Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness ( #GWI )"
www.newswise.com/articles/und...

Full paper:
www.nature.com/articles/s41...
Underlying cause of Gulf War illness confirmed in UTSW study Findings could lead to possible treatments for veterans’ debilitating symptoms 20-Nov-2025 7:30 PM EST, by UT Southwestern Medical Center facebook sharing buttontwitter sharing buttonemail sharing buttonsharethis sharing button♡ Newswise: Underlying cause of Gulf War illness confirmed in UTSW study Credit: UT Southwestern Robert Haley, M.D., is Professor of Internal Medicine in the Division of Infectious Diseases and Geographic Medicine and in the Peter O’Donnell Jr. School of Public Health at UT Southwestern. A Distinguished Teaching Professor, Dr. Haley holds the U.S. Armed Forces Veterans Distinguished Chair for Medical Research, Honoring Robert Haley, M.D., and America’s Gulf War Veterans. Newswise — DALLAS – Nov. 20, 2025 – Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness (GWI) among tens of thousands of veterans of the Persian Gulf War, UT Southwestern Medical Center scientists confirmed in a new study. The findings, published in Scientific Reports, could lead to effective treatments for this condition that has plagued former soldiers for 30-plus years.
November 22, 2025 at 4:28 PM
Reposted by Irish ME/CFS Association
bellamyj.blacksky.app
This is needed. Please donate if you have the funds!
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 2d
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.

I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time

www.youtube.com/watch?v=y1rS...

#MEcfs

1/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
November 22, 2025 at 8:44 PM
Reposted by Irish ME/CFS Association
admiringbog.bsky.social
I agree, I donated as well.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 2d
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.

I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time

www.youtube.com/watch?v=y1rS...

#MEcfs

1/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
November 22, 2025 at 8:38 PM
Reposted by Irish ME/CFS Association
ph-ph-ph.bsky.social
‘..mitochondrial dysfunction,
ATP deficit,
oxidative stress &
neuroinflammation
as potential targets for treatment.’
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 2d
US press release:
"Underlying cause of Gulf War illness confirmed in UTSW study"

"Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness ( #GWI )"
www.newswise.com/articles/und...

Full paper:
www.nature.com/articles/s41...
Underlying cause of Gulf War illness confirmed in UTSW study Findings could lead to possible treatments for veterans’ debilitating symptoms 20-Nov-2025 7:30 PM EST, by UT Southwestern Medical Center facebook sharing buttontwitter sharing buttonemail sharing buttonsharethis sharing button♡ Newswise: Underlying cause of Gulf War illness confirmed in UTSW study Credit: UT Southwestern Robert Haley, M.D., is Professor of Internal Medicine in the Division of Infectious Diseases and Geographic Medicine and in the Peter O’Donnell Jr. School of Public Health at UT Southwestern. A Distinguished Teaching Professor, Dr. Haley holds the U.S. Armed Forces Veterans Distinguished Chair for Medical Research, Honoring Robert Haley, M.D., and America’s Gulf War Veterans. Newswise — DALLAS – Nov. 20, 2025 – Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness (GWI) among tens of thousands of veterans of the Persian Gulf War, UT Southwestern Medical Center scientists confirmed in a new study. The findings, published in Scientific Reports, could lead to effective treatments for this condition that has plagued former soldiers for 30-plus years.
November 23, 2025 at 10:47 AM
irishmecfsassoc.bsky.social
Comments welcomed in reply to this query to us

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME
A woman (from Ireland) has asked me the following question and has given me permission to share it to see what comments come in. -- Hi I am wondering if I could get some advice regarding a doctors visit please . I am currently bedbound which I have explained to my gp but they are refusing to give me my prescription unless I go into the clinic to see them in person . I am physically not able and scared it will be detrimental to my already very poor health . Any advice would be greatly appreciated.
November 22, 2025 at 5:43 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Alison Hume MP shares an account of severe #MECFS and warns that many healthcare professionals lack understanding of severe ME — especially its hallmark symptom, post, exertional malaise PEM — and that patients are too often pushed into pathways that simply aren’t appropriate.
November 21, 2025 at 12:28 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Highlights — JoPlattMP.bsky.social MP developed #MECFS after #LongCOVID and says these are among the most devastating yet neglected illnesses of our time. She calls for research to match Germany’s €500m pledge & for a severe ME service, with patients dying from nutritional failure.
November 21, 2025 at 6:50 AM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Tessa Munt MP calls for urgent action to accelerate #MECFS research. The UK has spent just £10 million over 12 years — about 60p per patient/year. Four times more went on a helicopter for a former PM, 12 times more on a bat tunnel for HS2. Why isn’t ME a strategic research priority?
November 20, 2025 at 9:09 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Tessa Munt MP warns that two preventable death reports in just over a year highlight the dangers facing people with severe #MECFS. She spoke to @BinitaKane.bsky.social, who described a 25yr old student and multiple missed opportunities to stop her decline. This is not an isolated case.
November 20, 2025 at 4:49 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Tessa Munt MP: “ME is perhaps the only condition where the sicker you become, the less care you receive from the NHS.” NHS care for severe ME is nonexistent, over 200 healthcare workers were so concerned they wrote to the Health Secretary 14 months ago but received no response.
November 20, 2025 at 11:51 AM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Tessa Munt MP highlights how Germany is taking post-infectious diseases seriously, committing €500m over 10 years to research #MECFS & #LongCOVID. She asks if the UK Government will make a comparable commitment, or wait a decade for the Germans’ conclusions before taking action?
November 20, 2025 at 7:04 AM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Tessa Munt MP highlights the economic impact of ME: based on a 2014–15 estimate, adjusted for inflation and increased case numbers, ME is estimated to cost the UK around £7 billion a year — rising to ~£20 billion including people who meet the criteria for ME with long COVID
November 19, 2025 at 8:51 PM
Reposted by Irish ME/CFS Association
abrokenbattery.bsky.social
Clip - Tessa Munt MP opens the #MECFS debate, noting ~400,000 have ME in the UK, & the total could be much higher including people with with long COVID. She highlights decades of substandard, sometimes harmful care, pitiful funding, and the outdated view of ME as psychiatric.
November 19, 2025 at 7:01 PM