Irish ME/CFS Association

@irishmecfsassoc

Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association-for Information, Support & Research NB: Posts ≠ advice. Registered Charity RCN 20100254. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also

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Irish ME/CFS Association@irishmecfsassoc· 1d

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, August 26 irishmecfs.org/blog/dundalk... Hopefully we’ll see some of you there. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #speirgorm #spéirgorm #speirghorm #spéirghorm #Dundalk

Irish ME/CFS Association@irishmecfsassoc· 3d

(Ireland) The HSE invite you to join a Lived Experience Group Meeting in September to share experiences. These meetings are online. #MyalgicEncephalomyelitis #PwME

HSE Ireland

𝗛𝗦𝗘 𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗚𝘂𝗶𝗱𝗲𝗹𝗶𝗻𝗲 𝗳𝗼𝗿 𝗠𝘆𝗮𝗹𝗴𝗶𝗰 𝗘𝗻𝗰𝗲𝗽𝗵𝗮𝗹𝗼𝗺𝘆𝗲𝗹𝗶𝘁𝗶𝘀 (𝗠𝗘)

Share Your Experiences of Living with ME: Help Improve Care

Classified as a neurological condition by the WHO, Myalgic Encephalomyelitis (ME) is a serious, complex, chronic, multi-system disease. Its hallmark is the worsening of symptoms after physical, cognitive or emotional activity, often severely limiting daily functioning and quality of life.

A HSE National Clinical Guideline for ME is being developed. The experiences of people with ME, their families and carers are central to this work.

We invite you to join a Lived Experience Group Meeting in September to share experiences of either:
➡️ Receiving a diagnosis of ME
➡️ Symptom worsening following activity (PEM/PENE)

For further information, email: Me.clinicalguideline@hse.ie

Irish ME/CFS Association@irishmecfsassoc· 9d

Tom Kindlon @tomkindlon.bsky.social : Another good attendance (last 4: 7, 5, 6 & 6). I thought it went well except for when there was some drilling fixing a door for a few minutes (normally background sound isn't a problem) #MEcfs #PwME #CFS

Irish ME/CFS Association@irishmecfsassoc· 14d

🧵 From @a_walk_for_m.e on IG: Another incredible day in memory of Josh. 💙 Thank you to every single person who played, donated, sponsored, volunteered, or supported the charity golf day. Together we raised over £3,000, taking our total fundraising for ME charities to more than £48,000. #mecfs 1/

Irish ME/CFS Association@irishmecfsassoc· 22d

Irish ME Trust social gatherings next week in KILKENNY, CORK, LIMERICK, DUBLIN & BRAY #MEcfs #PwME #CFS #ME #MyalgicE

Have a Snack on ME
Our next social gatherings will take place in –
KILKENNY, CORK, LIMERICK, DUBLIN & BRAY.
Full details as follows:
KILKENNY
Bistro Bar, Kilkenny River Court Hotel
The Bridge John Street, Kilkenny.
Tuesday 28th July - Time – 2.00pm (organised by Ailish)
CORK
Barry’s of Douglas, Bar & Restaurant, Douglas, Cork.
Wednesday 29th July - Time – 12.00pm (organised by Ashling)
DUBLIN
Cassidy’s Hotel
Upper O’Connell Street, Dublin 1
Wednesday 29th July - Time – 2.00pm (organised by Suzanne)
LIMERICK
The Strand Hotel
Ennis Road, Limerick
Wednesday 29th July - Time – 12.00pm (organised by Sarah)
BRAY
Villa Pacis Centre (on grounds of Queen of Peace Church in Bray)
Vevay Road, Bray, A98VP93.
Friday 31st July - Time – 12.30pm (organised by Audrey)
All are Welcome
If anybody is interested in helping to arrange further locations, please contact info@imet.ie

Irish ME/CFS Association@irishmecfsassoc· 25d

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, August 5 irishmecfs.org/blog/dundalk... Hopefully we’ll see some of you there. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #speirgorm #spéirgorm #speirghorm #spéirghorm #Dundalk

Irish ME/CFS Association@irishmecfsassoc· 25d

Article can be read for free here: www.irishtimes.com/health/2026/... Thanks to everyone who made themselves available for interview including the two people quoted #mecfs #cfs #pwme

Irish ME/CFS Association@irishmecfsassoc· Jul 15

Tom Kindlon @tomkindlon.bsky.social : I thought it went well, with patients and parents from 3 counties. I plan to host at least one more in Dundalk this summer. #MEcfs #PwME

Irish ME/CFS Association@irishmecfsassoc· Jul 5

Suggestions welcomed for this enquiry. Feel free to private message us or email info at irishmecfs dot org #MEcfs #PwME

An enquirer to the Irish ME/CFS Association has asked us to share this enquiry for them:
—
are you aware of any charities/services housing and supporting people with severe me? Eg cheshire.

—
You can private message me if you prefer.

Irish ME/CFS Association@irishmecfsassoc· Jul 5

Suggestions welcomed for this enquiry. Feel free to private message us or email info at irishmecfs dot org #MEcfs #PwME

An enquirer to the Irish ME/CFS Association has asked us to share this enquiry for them:
—
I have severe mecfs. Just wondering if you have any info about what organisation would be best to go through when applying for personal assistant. I am in Galway, there is quite a number of services I could apply through.
—
You can private message me if you prefer.

Irish ME/CFS Association@irishmecfsassoc· Jul 3

Feel free to private message us or email info @ irishmecfs dot org #MEcfs #MCAS

Responses welcomed for this enquirer to the Irish ME/CFS Association:
—
I am just wondering if you know anyone who has been prescribed Xolair to help mcas please ? I’m severe and bedbound and trying to access treatments it’s very hard . Do you know if any specialist who is willing to work with bedbound patients and let them try treatments ? I’m desperate .

Irish ME/CFS Association@irishmecfsassoc· Jul 2

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, July 15 irishmecfs.org/blog/dundalk... Hopefully we’ll see some of you there. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #longcovid

Informal ME/CFS social meet up in Dundalk
2:30 PM-4 PM, Wednesday, July 15
Lisdoo Bar & Restaurant, Newry Rd, Dundalk A91TF30
All welcome incl. relatives & people with long Covid
Buy your own food +/or drink
Register for any updates (in case cancelled - hasn't happened so
far):
tomkindlon@irishmecfs.org
Host:
Tom Kindlon
Irish ME/CFS Association for Information. Support & Research

Irish ME/CFS Association@irishmecfsassoc· Jun 18

Tom Kindlon @tomkindlon.bsky.social : I thought this went well. I've heard that some people stayed on to chat till around 5 PM. #MEcfs #PwME

Irish ME/CFS Association@irishmecfsassoc· Jun 16

2/ Photo: Dr Amolak Bansal with secretary, Orla Ní Chomhraí, at our free event with Dr Bansal in Galway in May. #PwME #CFS

Irish ME/CFS Association@irishmecfsassoc· Jun 16

Update from the Irish ME/CFS Association for the Hospital Saturday Fund ⁦‪ #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE 1/

Update from the Irish ME/CFS Association for the Hospital Saturday Fund

Thanks very much to the HSF for the core grant of €3000 we received this year which helped us continue our ongoing work and contributed to us being able to organise 5 free talks and question-and-answer sessions with an international speaker, Dr Amolak Bansal, during May in Cork, Dublin, Galway, Limerick & Sligo; these were followed by a chance to chat with others over free tea/coffee and biscuits. We were also able to pay someone to record one event for people who couldn't make it and it helped get quite a lot of local and national media coverage, raising awareness and understanding of the illness.

We continue to raise much needed money for research and likely will disperse more money from our research fund in the next year.

We continue to distribute Irish and international news and information through our many active social media accounts and other channels e.g. our updated website.

Photo: Dr Amolak Bansal with secretary, Orla Ní Chomhraí, at our free event with Dr Bansal in Galway in May.

The Hospital Saturday Fund

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #MECFS #cfs #pwME #MyalgicE

Irish ME/CFS Association@irishmecfsassoc· Jun 15

Dr Amolak S Bansal talk: "What is ME/CFS? Hallmarks of a complex but poorly understood condition" (2026) YouTube link: www.youtube.com/watch?v=HK3O... It would be great if more people could subscribe to our channel #MyalgicEncephalomyelitis #MEcfs #MyalgicE #PwME #TogetherWeAreStronger

Irish ME/CFS Association@irishmecfsassoc· Jun 10

A woman with ME discusses the effect the illness has had on her a bit in this programme www.tg4.ie/en/player/ca... #MEcfs #PwME #Gaeilge #AsGaeilge #spéirgorm #speirghorm

This programme is in Irish but English subtitles are available.
Jacqueline (in photo) discusses ME and the effect it has had on her a bit in the programme.
https://www.tg4.ie/.../categories/top-documentaries/play/...
Here are timestamps for the segments with Jacqueline and her husband Rory
1st segment starts 6:42
8:34 chronic illness mentioned briefly just to say single-income family
10:14 segment ends
2nd segment: 17:37
18:30 condition mentioned and then there is more discussion about the effect ME has had on Jacqueline's life
End of segment 22:25.
Jacqueline is from the US originally and everything she says is in English.
#MEcfs #PwME
See less

Photo of Rory and Jacqueline Bonass

Irish ME/CFS Association@irishmecfsassoc· Jun 4

Thanks very much again to Dr Bansal for his tour of Ireland. The feedback we have seen has been collated here 1drv.ms/b/c/94454629... Feel free to give further feedback. #MEcfs #PwME

Comments from Dr Amolak Bansal when he sent his receipts for the 5-venue tour that the Irish ME/CFS Association arranged:

"I hope the lecture series was useful for people with ME/CFS in Ireland. I enjoyed meeting everyone after each of the lectures and on average spent about one hour talking with people. Please accept my sincerest thanks for inviting me to speak and for all your effort in arranging everything for stay in multiple venues in Ireland. Additionally, let me know if you have any feedback and when the video of my presentation in Dublin will become available for people to view."

We were able to send him this set of feedback:
https://1drv.ms/b/c/94454629db95df81/IQDfQF4_xBEgQaBe3iO-Mn7OAQNAVB2TAcLL153EBZd5lJI?e=redtcP
Feel free to give further feedback.

Thanks again to all the meeting hosts and all our other volunteers and supporters who enable us to put on such events.
Photo of Dr Bansal

Irish ME/CFS Association@irishmecfsassoc· Jun 3

TG4’s Moving West on 7:30 pm, June 9 may mention ME. Jackie Bonass (with ME) has said she "talked a fair amount about being ill with ME so hopefully that will make it into the final edit a bit" It includes English on-screen subtitles. #MEcfs #PwME #spéirgorm #speirghorm

Lifestyle and the scenery - why moving West to Sligo was the right choice

Popular TV series returns for a fourth season on TG4

Photo of Rory and Jackie Bonass

Irish ME/CFS Association@irishmecfsassoc· May 31

31/ May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image. Day #31 #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME

imagine if... ...one day, you got a flu or a stomach bug... but it
never went - away, instead, it got worse... the flu-like state would
be with you every day, and there would be pain, in muscles, joints,
arms, back, legs, face... and this pain would sometimes be unbearable,
so that you couldn't move or stand up... then there would be nausea
and headaches... and you would get repeated infections, anywhere and
everywhere in your bod... and dizziness and vertigo... and muscle
weakness, sometimes you would be so weak that you couldn't hold a cup
to your mouth or lift your arms or turn your head.. then you would get
extreme sensitivity to light, noise, smell, they would make you
sick... you couldn't bear anyone to touch you, this would cause
searing pain... then there would be times when your short-term memory
didn't work and you couldn't remember words or articulate them... you
brain would be so fogged over... on top of all this, you couldn’t
sleep... ..and this would drastically limit you

Irish ME/CFS Association@irishmecfsassoc· May 30

30 part b/ Here's the full video, "Sleeping Beauty", that a daughter of a woman with ME made to increase awareness and understanding of the illness (4 minutes 32 seconds) www.youtube.com/watch?v=RFsj... Day 30 #mecfs

Becoming aware of the struggles faced by people living with ME when
her mother received the diagnosis Holly Ramsley is using a famous
fairy tale to banish myths about the condition

Irish ME/CFS Association@irishmecfsassoc· May 30

30/ May is Myalgic Encephalomyelitis (M.E.) Awareness Month. Daughter tries to raise awareness and understanding of M.E., which her mother suffers from, with a film she made, "Sleeping Beauty". Piece from a UK local TV station www.itv.com/news/meridia... Day 30 1/n #MEcfs #PwME

I am far too young to be so ill and in so much pain. Children also get
ill with Myalgic Encephalomyelitis. While children have a good chance
of recovery, they can also be very severely ill and miss out on
school, social and play activities and all the things children do. The
severest cases are bedridden or worse. Some children never recover and
stay ill their whole lives. . . www.facebook com/MEAwarenessPics
Myalgic Encephalomyelitis (ME) in some countries also known as Chronic
Fatigue Syndrome (CFS)

Irish ME/CFS Association@irishmecfsassoc· May 30

30/ May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image. Day 30 #MyalgicE #MyalgicEncephalomyelitis #chronicfatiguesyndrome #MEcfs

Irish ME/CFS Association@irishmecfsassoc· May 29

From Ruth Flood @roothflud.bsky.social , host of the Dr Amolak Bansal talk the Irish ME/CFS Association organised in Sligo #MEcfs #PwME #spéirgorm #speirghorm @tomkindlon.bsky.social

Irish ME/CFS Association@irishmecfsassoc· May 29

29/ May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image. Day 29 #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Myalgic Encephalomyelitis (ME) * Dozens and dozens of debilitating and
painful multisystemic symptoms * Majority of ME sufferers get ill
following a viral infection or a flu-like illness * 10% of ME
sufferers are children * 25% of ME sufferers are long term housebound,
bedbound, wheelchair-bound S * Uncertain prognosis: no cure or
universally effective treatment (Myalgic Encephalomyelits is also
known as Chronic Fatigue Syndrome in some countries)

Irish ME/CFS Association@irishmecfsassoc· May 29

29/ May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video Fixer Ashleigh & Jodie Cleary discuss their experiences of M.E. (3 minutes 38 seconds). Also includes Jane Colby of the @tymestrust. ITV News Anglia www.youtube.com/watch?v=ooQD... Day 29

A Fixer from Harwich in Essex wants to raise awareness of the medical
condition Myalgic Encephalomyelitis (ME) to stop people mistaking it
for laziness. Myalgic Encephalomyelitis ME (Myalgic Encephalomyelitis)
is a chronic (long-lasting) and severe neurok condition. It was
formerly known as Atyp The term Chronic Fatigue Syndrome (CFS) used
but may include other fatigue states. Various infections are known
triggers of ME mptoms of ME and central nervous system of memory,
concentration and fing understand.' FRENCH Her story was shown on ITV
News Anglia on Thursday 3rd October. Fixer Ashleigh Lovett (17) was
diagnosed with ME, or chronic fatigue syndrome, two years ago. Her
symptoms include heavy limbs and painful legs, and some days it is so
bad that she is unable to get out of bed. 'People didn't believe I was
ill at first,' says Ashleigh. 'There is no physical sign of ME, so
people used to say I was spoilt and lazy. It hurt a lot." With the
help of Fixers, Ashleigh wants to create a weighted suit for people to
wear so they can understand what it is like to live with ME. 'I did
feel very isolated from everyone else because I didn't know anyone who
had it,' Ashleigh explains. "I didn't know where to turn to talk about
it, because I didn't think anyone else would

Irish ME/CFS Association@irishmecfsassoc· May 28

We were involved in helping to organise this interview. We think it is likely in the Donegal Democrat newspaper this week as Aoife works for them www.donegallive.ie/news/milford... #MEcfs #CFS

Letterkenny-Milford MD
‘There is always light at the end of the tunnel’
By Aoife Gallagher
DonegalLive multimedia journalist

Published 28th May 2026, 18:27 BST
Updated 28th May 2026, 18:27 BST
Photo of Karen alongside Dr Bansal at a CFS information session held in Sligo
Karen alongside Dr Bansal at a CFS information session held in Sligo | DonegalLive

Irish ME/CFS Association@irishmecfsassoc· May 28

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, June 17 Hopefully we’ll see some of you there irishmecfs.org/blog/wednesd... Carers/parents/similar welcome. #MEcfs #PwME

Irish ME/CFS Association@irishmecfsassoc· May 28

28/ May is #MEAwareness month You can help by sharing and/or liking this video. Teenager Ashleigh Lovett made a short (3 minute 28 second) film explaining M.E. Another teenager wore weights on legs and arms to partly experience M.E. symptoms www.youtube.com/watch?v=py-D... Day 28 #MEcfs #PwME

Two years after she was diagnosed with ME, a Fixer from Essex is
helping others to understand the condition that can leave her
bed-bound. Seventeen-year-old Ashleigh Lovett, who lives in Harwich,
is concemed that ME, also known as chronic fatigue syndrome, is often
mistaken for laziness. With Fixers, she's created a film to shatter
that myth and reveal the challenges faced by those living with the
symptoms which include extreme physical and mental tiredness. wanted
to raise awareness of the condition to better inform people about what
it actually is,' says Ashleigh.

Irish ME/CFS Association@irishmecfsassoc· May 28

28/ May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image. Day 28 #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Most believe that following the Covid pandemic these older prevalence figures may be too low.