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
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
irishmecfsassoc.bsky.social
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
November 20, 2025 at 4:18 PM
irishmecfsassoc.bsky.social
#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
November 18, 2025 at 11:29 PM
irishmecfsassoc.bsky.social
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 17, 2025 at 9:27 PM
irishmecfsassoc.bsky.social
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A handwritten note saying "To all at the Irish ME/CFS Association, Many thanks for your support over the years. From all at ME research UK"
November 12, 2025 at 9:33 PM
irishmecfsassoc.bsky.social
We got this lovely card from ME Research UK @meresearchuk.bsky.social following our recent donation to them of €14,000 from our research fund bringing our total contribution to them over the years to €156,000.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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Scan of a thank you card made in aid of ME Research UK
November 12, 2025 at 9:30 PM
irishmecfsassoc.bsky.social
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From the Irish ME Trust:

2026 ME Therapy Retreat.

Their email address is info at imet dot ie.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Complimentary to this package will be the use of the hotel’s Leisure Club https://www.woodlands-hotel.ie/leisure-club/ which includes a 20-metre heated indoor swimming pool, Health Suite with sauna, steam room, jacuzzi and fully equipped gym. The hotel encourages guests to prebook all leisure centre facilities - https://www.woodlands-hotel.ie/leisure-club/guest-booking-form/. Separate to this the hotel’s Revas Spa https://www.woodlandsrevasspa.ie/ can be booked for those interested in Spa Treatments, Hair Studio, Thermal Suite, Beauty Treatments, etc. Agenda: Monday May 11th 5.00pm-6.00pm Welcome Meeting in the Treaty Room Tuesday May 13th Therapy Sessions in the Treaty Room Our therapy sessions, under the guidance of Tracy O’Donoghue from the Body Tree Clinic in Limerick, will comprise a variety of therapies, which will include Indian Head Massage, Kinesiology, Acupuncture, Reiki and more. These will all take place on the Tuesday. Wednesday May 14th Information talks / Workshops in the Treehouse Area 10.00am to 12.30pm 2.00pm to 4.30pm If you do decide to book for the ME Therapy Retreat, please inform us as we would like to keep a record of the numbers. Also, please let us know if you would like to avail of the coach transfer. Best wishes Declan Carroll Irish ME Trust Carmichael House North Brunswick Street Dublin 7 Tel 01-4013629
 www.imet.ie RCN 20026103
November 11, 2025 at 8:00 PM
irishmecfsassoc.bsky.social
From the Irish ME Trust:

2026 ME Therapy Retreat.

Their email address is info at imet dot ie.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
ME Therapy Retreat A Chara, We are holding our 2026 ME Therapy Retreat next May for people with ME in the Woodlands Hotel, in Adare, Co Limerick. The dates are for the nights of 11th, 12th & 13th May 2026 and we have secured a package from the hotel for half board, which will comprise the following: - Monday 11th May – Evening Meal Tuesday 12th May – Breakfast & Evening Meal Wednesday 13th May – Breakfast & Evening Meal Thursday 14th May – Breakfast Dinner times as follows: Monday 11th May – 6.00pm Tuesday 12th May – 5.30pm Wednesday 13th May – 5.30pm The cost of this retreat will be €220.00 per person sharing. In this instance, you are invited to bring a guest with you for the duration. For those who do not wish to share a room, the cost for single occupancy will be €390.00. For those travelling by train, we will have a coach pick up at Limerick Railway station (Colbert). There is no charge for those availing of the coach transfer. For those wishing to book for this ME Therapy Retreat, you will need to contact the hotel directly. The details are: Woodlands Hotel, Adare, Co. Limerick Tel: 061-605100. Website: www.woodlands-hotel.ie. Please quote the ME Therapy Retreat package when booking. Please also ensure that you will be booked into a ground floor room as there is no elevator to the upper floor. Also, please let the hotel know of any dietary requirements, whether you are vegan, vegetarian or gluten intolerant, etc.
November 11, 2025 at 7:56 PM
irishmecfsassoc.bsky.social
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Details for the next meeting of the Bray ME/CFS adult support group

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #Bray
(Ireland) From Audrey Lodge: Dear All, The next meeting of the ME/CFS Adult (Bray) for 2025 will take place on the earlier date of Friday 21st November at 12.30pm, usual venue. There will be snacks available afterwards for anyone who can stay, complements of IMET (HAVE A SNACK ON ME). Let me know before 11am on the day (if you can), if you plan on attending so I will know how many rolls/sandwhiches and nibbles to purchase. This is the last meeting for 2025. The next meeting will be held on the 30th January 2025. Warm wishes, Audrey Lodge audreylodge at hotmail.com *The venue is Villa Pacis which is the community hall in the grounds of Our Lady Queen of Peace Road, Bray. There is usually plenty of parking available on site and the venue can be accessed via either of the Vevay road or Puntland road entrances.
November 6, 2025 at 8:56 PM
irishmecfsassoc.bsky.social
The next meeting of the Bray ME/CFS adult support group is on Friday, November 21. See next post for more details

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Map showing the Greater Bray area with the heading Bray ME/CFS Adult Support Group
November 6, 2025 at 8:51 PM
irishmecfsassoc.bsky.social
Tom Kindlon @tomkindlon.bsky.social : I thought it went well. There were people there from 3 different counties.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Irish ME/CFS Association logo Dublin 15 informal meet-up (November 2025) Photo of 5 people around a table
November 5, 2025 at 11:01 PM
irishmecfsassoc.bsky.social
It could be great if some people with ME/CFS in Ireland could raise awareness by responding to this journalist request

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Kitty Holland edprsSontocf91ig5mga30154tt2c7g2fciu09gu4l1umh0575atfug7hut1 · Work request: I am planning some pieces on the reality of being disabled in Ireland. Among the issues I want to look at are the additional costs/poverty that can come with being disabled. I need to talk to people living this reality, which I know is a big ask, but I feel it is crucial that the voices of those enduring this are heard. I can't do a piece on this without those voices. If you or anyone you know would be willing to talk to me about this please email on Kitty.Holland@irishtimes.com
November 5, 2025 at 7:26 PM
irishmecfsassoc.bsky.social
Association chairperson, Vera Kindlon, putting the labels on our Christmas cards, the distribution of which she has done for nearly 30 years.

Cards should be available on our website soon. 

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Photo of Vera Kindlon with labels, Christmas card packs and print outs.
October 30, 2025 at 2:49 PM
irishmecfsassoc.bsky.social
One of our members, Marie Curran, was interviewed in a long segment on storm preparation today on RTE. More details in image.

Listen here www.rte.ie/radio/radio1...

#MEcfs #PwME
Tom Kindlon-pwme Admin Top contributor · · tpdnseoSro4l48cmu994m65fa763a37ig12hu75h1tgg35ah9hm442801361 · RTE: Countrywide interview today People will need to decide themselves whether they want to look into this as there are only 2 mentions of ME. It's a piece on storm preparation. Marie Curran, a woman with ME, is interviewed at the start of the piece at around 9:30 for 7 minutes. She is briefly then discussed at the start of the follow-up in-studio discussion but her illness isn't mentioned then. So the brief references to ME are at around 15:51 and 16:40. [https://www.rte.ie/.../1540530-countrywide-saturday-25.../](https://www.rte.ie/.../1540530-countrywide-saturday-25.../) rte.ie CountryWide Saturday 25 October 2025
October 25, 2025 at 2:05 PM
irishmecfsassoc.bsky.social
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, November 5.

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 1:15 PM - 2:45 PM* Wed Nov 5 *New time 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
October 21, 2025 at 8:25 PM
irishmecfsassoc.bsky.social
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
October 3, 2025 at 3:41 PM
irishmecfsassoc.bsky.social
. @tomkindlon.bsky.social :
Meet-up went well. The 2 people who came were not local. One got the train to Heuston station & then a taxi; the 2nd drove and then had a nap in the car park. The latter (driving & then resting or napping in the car) might be an option for some perhaps.
#MEcfs #PwME #CFS
Irish ME/CFS Association logo Dublin 15 informal meet-up (October 2025*) *a 3rd person opted not to be in the photo photo of 2 men
October 2, 2025 at 2:38 PM
irishmecfsassoc.bsky.social
A nice message that ME Research UK @meresearchuk.bsky.social have been sharing today on social media following our recent donation to their research fund

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
ME Research UK ME Research UK is grateful in the extreme to the faith placed in us by Irish ME/CFS Association over the years. The latest donation just received - drawing on its members' wishes - will be dedicated to research. For over 20 years, from donations to co-funding projects the Association has been one of our most steadfast friends. Photo of 2 hands holding a heart symbol
September 27, 2025 at 3:17 PM
irishmecfsassoc.bsky.social
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Full announcement of our donation of €14,000 to
@meresearchuk.bsky.social to support their research

Read more about their important work here:
www.meresearch.org.uk

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS
From the Irish ME/CFS Association: Earlier in the year, we asked our members how they would like €34,000 from our research fund to be used (one of the options was to retain the money). They gave a percentage distribution amongst the options. We are now announcing the results. Today it's ME Research UK. One can read about their work here: https://www.meresearch.org.uk/ . We are pleased to be able to help them continue with their important work. Thanks to all our donors & fundraisers plus others who have supported us in any way. #TogetherWeAreStronger #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME ME Research UK
September 26, 2025 at 7:12 PM
irishmecfsassoc.bsky.social
We're delighted to again support @meresearchuk.bsky.social & their important research.

Thanks to all our donors & fundraisers + others who have supported us in any way

See next message for more details

#TogetherWeAreStronger #MEcfs
Irish ME/CFS Association logo has given in September 2025 €14,000 from its research fund to ME Research UK ME Research UK logo bringing the total contribution over the years to €156,000
September 26, 2025 at 7:05 PM
irishmecfsassoc.bsky.social
New:
Burden of Disease in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Scoping Review

Free fulltext:
link.springer.com/article/10.1...

"ME/CFS imposes a substantial health, social and economic burden of disease"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Abstract Objective Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious chronic and complex multi-system disease characterised by symptoms such as post-exertional malaise, fatigue, cognitive impairment and pain. Diagnosis is based on international consensus criteria, and no curative treatment is available. In the USA, its prevalence is estimated at 0.42% among adults, with women affected three times as often as men. Prevalence is expected to increase due to the COVID-19 pandemic. In addition to its severe symptoms, ME/CFS has a substantial economic impact. This scoping review aimed to systematically examine the global health, social and economic burden of ME/CFS. Methods We conducted a systematic literature search following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines in six databases and supplemented it with a citation search. We assessed study quality using a modified version of the Mixed Methods Appraisal Tool. Results We included 20 studies that assessed costs (n = 16), disability-adjusted life years (DALYs) (n = 3), employment rates (n = 1), and school attendance (n = 1) as indicators of disease burden. Reported costs per patient ranged from USD 2,916 to USD 119,611, with indirect costs accounting for the largest proportion. DALYs reported for the USA ranged from 0.714 million in 2016 to 5.77 million in 2022. Conclusion ME/CFS imposes a substantial health, social and economic burden of disease. Discrepancies in estimates are probably due to differences in study samples, methodologies, cost components, and healthcare systems. Because ME/CFS is assumed to be underdiagnosed, its true burden may be even higher.
September 23, 2025 at 8:39 PM
irishmecfsassoc.bsky.social
The Open Medicine Foundation has been sharing around the following message on social media

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Open Medicine Foundation We’re incredibly grateful to the Irish ME/CFS Association for their generous gift of €10,000 to support OMF’s large-scale ME/CFS biomarker project, BioQuest. Over the years, the Irish ME/CFS Association contributed more than €58,000 to OMF, helping advance research and hope for the ME/CFS community. Thank you for standing with us and fueling progress! #MEcfs #BioQuest #OMFResearch #HopeInAction Thank you written in calligraphy Irish ME/CFS Association logo
September 23, 2025 at 12:19 PM
irishmecfsassoc.bsky.social
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, October 1.

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

Carers/parents/similar welcome.

#MEcfs #PwME
Informal ME/CFS social meet up in Dublin 2:30 PM-4PM, Wednesday, October 1 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 Irish ME/CFS Association logo
September 20, 2025 at 2:07 PM
irishmecfsassoc.bsky.social
From Declan Carroll of the Irish ME Trust

Our next social gatherings will take place in LIMERICK DUBLIN, KILKENNY & CORK.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Have a Snack on ME Our next social gatherings will take place in LIMERICK DUBLIN, KILKENNY & CORK. Full details as follows: LIMERICK The Strand Hotel Ennis Road, Limerick Wednesday 24th September - Time – 12.00pm (organised by Sarah) DUBLIN Leonardo Hotel (formerly Jury’s Inn) Parnell Street, Dublin 1 Wednesday 24th September - Time – 2.00pm (organised by Joan) KILKENNY Bistro Bar, Kilkenny River Court Hotel The Bridge John Street, Kilkenny, Wednesday 24th September - Time – 2.00pm (organised by Ailish) CORK Barry’s of Douglas, Bar & Restaurant, Douglas, Cork. Tuesday 30th September - Time – 12.00pm (organised by Ashling) All are Welcome If anybody is interested in helping to arrange further locations, please contact info@imet.ie
September 18, 2025 at 12:53 PM
irishmecfsassoc.bsky.social
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Full announcement of our donation of €10,000 to @openmedf.bsky.social to support their research

Read more about their important work here:
www.omf.ngo

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS
September 17, 2025 at 7:23 PM