The Irish ME/CFS Association has now uploaded a booklet entitled "The Irish ME Tips Collection" - a compilation of practical tips on living with ME - gathered from ME sufferers and put together by two families living with severe ME. The guide contains useful information and contact details for people with ME, their carers and professionals working with those affected by the condition. It was originally launched for ME Awareness Week in 2003.
The ME Tips Collection is a reference guide of 83 tips on living with ME. Headings include chemical sensitivities, eating, education, holidays, light and noise sensitivity, pacing, pain, sleep, travelling, wheelchairs and many more. Each heading has information about coping with a particular symptom or problem and where to get more help and is cross-referenced. It should be especially useful for the severely affected.
ME/CFS Awareness Month Activities (May 2014)
Tom Kindlon, Irish ME/CFS Association's Assistant Chairperson, was interviewed about ME and ME Awareness Month on the "Good for You" health programme on Dublin City FM on May 6.
Tom comments: Ideally I would have talked about the severely affected and also mention more specific research findings, but it can be hard to think of answers on the spot to questions.
We are pleased to announce that a leading UK ME Expert, Dr Charles Shepherd, will give three talks on ME during ME Awareness Month. The talks, entitled 'ME/CFS - where are we now with research, diagnosis and management?', will take place in the following venues:
Limerick - Friday May 9 - 12 PM (noon)
Limerick Strand Hotel, Ennis Road, Limerick City http://www.strandhotellimerick.ie/
Galway - Saturday May 10 - 2 PM
Connacht Hotel (formerly Carlton Hotel), Renmore, Galway City http://www.theconnacht.ie/
Dublin - Sunday May 11 - 3 PM
Carlton Hotel Dublin Airport, Old Airport Rd, Cloghran (Santry), Dublin Airport. http://www.carltondublinairport.com/
Admission: €5 (on the door).
Dr. Shepherd will be fresh from the major conference in the field, held this year in San Francisco, and will share information from that. Following each talk, there will be a Q&A session. If you want further information, please contact us.
By Drs Charles Shepherd & Abhijit Chaudhuri
This 52-page A4-sized booklet is now available from the Irish ME/CFS Association for €6.50 each (for people in Ireland only). Price includes post and packaging. Alternatively, it can be bought at the Dr. Shepherd talks (see above) in Limerick, Galway and Dublin for €5.
One of the joint authors, Dr. Shepherd, is medical advisor to the UK ME Association and has had a specialist interest in ME for 30 years. The other author, Dr. Chaudhuri, is a consultant neurologist with a special interest in ME/CFS/PVFS.
Unfortunately, the Irish ME/CFS Association doesn't have the resources currently to send a copy to all Irish GPs [We have written to all Irish GPs twice in the last eight years and have also sent them the "Overview of the Canadian Consensus Guidelines for ME/CFS"].
Members of the Irish ME/CFS Association will get a copy of the booklet with the summer newsletter and are encouraged to give it to their doctor, local GP practice or other healthcare professional (We're enclosing an envelope to help facilitate this). New members who join (or re-join) before the end of May 2014 will get a copy as part of their introductory pack. It is relatively good value to post it out with the newsletter as the postage only increases a little.
Some of the booklet may be difficult to read for those who are not used to the language of medicine and research but hopefully many people will be able to read and understand at least some of the points that are made. It has a lot of references which might be useful if anyone needs to prove their point on a particular issue.
The Irish ME/CFS Association's Assistant Chairperson, Tom Kindlon, has been named as a finalist in the WegoHealth Health Activist Awards. He was earlier nominated in three categories (Best in Show: Twitter, Best in Show: Facebook and Health Activist Hero). He's a finalist in the category, "Best in Show: Twitter". One can find a quick profile he wrote for the competition here.
You can follow Tom on Twitter at: @TomKindlon or, if you want less messages, @irishmecfs.
The awards ceremony is on March 27, 2014.
Update: Tom didn't win. You can watch his submission, in which he discusses some of his work for the Irish ME/CFS Association, below:
ME/CFS Awareness Month Activities (May 2013)
The Irish ME/CFS Association is pleased to announce the following four talks by Dr. Ros Vallings from New Zealand as part of its ME Awareness Month activities in May. Admission is €5, on the door, to help towards the costs of organising these four meetings, and Dr. Vallings' trip.
Limerick - Tuesday May 21 2013 - 11:30 AM
Limerick Strand Hotel, Ennis Road, Limerick City http://www.strandhotellimerick.ie/ Tel (for hotel): 061 421 800
Galway - Wednesday May 22 2013 - 7:30 PM
Westwood Hotel, Dangan, Newcastle, Galway City http://www.westwoodhousehotel.com/
Carrick-on-Shannon - Thursday May 23 2013 - 8 PM
Bush Hotel, Main Street, Carrick-on-Shannon, Co. Leitrim http://www.bushhotel.com/
(lots of parking at the back of the hotel)
Dublin - Saturday May 25 2013 - 2:30 PM
Carlton Hotel Dublin Airport, Old Airport Rd, Cloghran (Santry), Dublin Airport. Tel: (01) 8667500; E-mail: firstname.lastname@example.org http://www.carltondublinairport.com/
Dr Vallings has said she will give a "general talk on the illness, e.g. underlying possible causes, diagnosis, update on research, management options, etc."
Dr Vallings has issued a profile of herself which can be read here.
Information on Dr. Vallings book "Chronic Fatigue Syndrome, M.E.: Symptoms Diagnosis Management" (published in 2012) can be read here. Copies will be on sale at the meetings.
This primer is now available from the Irish ME/CFS Association for €3 each, €5 for 2. Prices including post and packaging (it's being sold at a slight loss - the authors say it couldn't be sold for profit, so we've rounded down).
A pdf of the booklet is available here. For the printed version, the cover is printed in colour, inside is black and white.
The following information is copied from the text:
Development of the International Consensus Primer for Myalgic Encephalomyelitis (ME)
An International Consensus Panel, consisting of clinicians, research investigators, teaching faculty, and an independent educator, represent diverse backgrounds, medical specialities and geographical regions. Collectively, the members of the panel have:
- diagnosed and/or treated more than 50,000 patients who have ME;
- more than 500 years of clinical experience;
- approximately 500 years of teaching experience;
- authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and
- several members have co-authored previous criteria.
Panel members contributed their extensive knowledge and experience to the development of the International Consensus Criteria and this Primer.
Unfortunately, the Irish ME/CFS Association doesn't have the resources currently to send a copy to all Irish GPs [We have written to all Irish GPs twice in the last seven years and have also sent them the Overview of the Canadian Consensus Guidelines for ME/CFS].
Members of the Irish ME/CFS Association will get a copy of the primer with the summer newsletter. New members will get a copy while stocks last (probably for another 12 months).
ME/CFS Awareness Month Activities (May 2012)
The Irish ME/CFS Association has arranged eight free meetings for May, ME Awareness Month, in Cavan, Dublin (x2), Galway, Limerick, Monaghan, Mullingar and Roscommon.
See below for full details of each.
Four free screenings of the ME/CFS documentary "Invisible"
These screenings will take place in the following venues:
Cavan - Sunday May 13 2012
Crystal Hotel, Dublin Road, Cavan Town http://www.cavancrystalhotel.com/ 3:30 PM
Limerick - Tuesday May 15 2012
Strand Hotel, Ennis Road, Limerick City http://www.strandhotellimerick.ie/ 12:30 PM
Monaghan - Tuesday May 15 2012
Killygoan Community House, Monaghan Town 7:30PM
Roscommon - Thursday May 10 2012
Hannon's Hotel, Roscommon Town http://www.hannonshotel.com/ 8PM
The documentary is one hour long. You can watch a clip at http://invisiblethemovie.com/
To read a review by an ME/CFS patient click here.
There will be a chance to chat to others afterwards.
Free Seminar for Youth with ME (13-25) and their parents
Dublin - Saturday May 12 2012 (International ME/CFS Day) - 2PM
Venue: Grand Canal Hotel, Grand Canal Street, Dublin 4 http://www.grandcanalhotel.ie/
This event will give participants an opportunity to share information and experiences about the impact of ME on their lives. ME can have a devastating affect at any age, but there are particular challenges faced by young people, especially in the areas of education and social development. The seminar will allow space and time for those affected to share their experiences and ways of coping and we hope will offer some tips and tactics on how to handle everyday life.
Screening of "I Remember Me" documentary about ME
Mullingar - Monday May 14 2012 - 8PM
Venue: Greville Arms Hotel, Pearse Street, Mullingar http://www.grevillearmshotel.ie/
Documentary screening will be followed by chat over tea/coffee & biscuits.
The documentary is 74 minutes long. It is not new (made in 2000) but the issues raised are still relevant today.
Galway Awareness Week Meeting
Galway - Thursday May 10 2012 - 7.30PM
Venue: Westwood House Hotel, Dangan, Upper Newcastle, Galway City.
Sufferers, family and friends welcome.
A few short videos on ME/CFS by Giles Meehan will be shown. These videos are non-technical and include sections explaining the illness to non-sufferers, so this meeting might be a good one to bring family and friends to, especially if they are having difficulty understanding the illness. The length of all the videos combined is about 40 minutes, so there will be plenty of time for tea/coffee and a chat afterwards.
Dr. Austin Darragh Talk and Questions-and-Answers Session
Dublin - Sunday May 27 2012 - 3PM
Venue: Sandymount Hotel (formerly Mount Herbert Hotel), Herbert Road, off Lansdowne Road, Dublin 4.
Topics: Dr. Darragh plans to cover topics such as “Is M.E. really Mitochondrial Exhaustion?" and "What’s in a name?". He will discuss the theoretical model he uses and the basis for using it. He will also discuss more practical material: his therapeutic strategy. This includes the endocrine and immune tests he tends to use, along with the drugs, supplements and lifestyle changes he recommends.
Dr. Darragh is one of the authors of the recently published international criteria for M.E. We have asked him to speak on this.
Dr. Darragh's CV can be viewed here.
All meetings are free. Further details are available from the Irish ME/CFS
Association: 01-2350965 or email@example.com.
Irish ME/CFS Association's Assistant Chairperson has paper on ME/CFS published in a peer-reviewed journal
Tom Kindlon, Irish ME/CFS Association's Assistant Chairperson (amongst other hats), has recently had a paper published in the peer-reviewed journal, Bulletin of the IACFS/ME.
An abstract of the paper, entitled "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", can be read here.
The full text can be read for free on the website of the Bulletin of the IACFS/ME.
Tom has received over 100 e-mails from various patients, carers, representatives of patient organisations and researchers since the paper was published. The response has been very positive.
The paper has 232 references so as you can imagine it took a lot of work (Tom says this was spread over 15 months).
This is Tom's first published paper. However, he has previously had 12 letters published in various medical journals - all but one in the last 4 years. The details of these letters can be viewed here. He also regularly contributes to discussions on ME/CFS literature, for example, with e-letters to medical journals.
Vivint Competition 2011
Thanks to everyone who voted in this competition! The Whittemore Peterson Institute for Neuro-Immune Disease won $100,000!
For further details about the contest, click here:
For more on the WPI, click here:
Chase Community Giving Competition 2011
Thanks to everyone who voted on Facebook in this competition! Two organisations involved in ME/CFS research won $90,000 between them in this competition:
- The Whittemore Peterson Institute for Neuro-Immune Disease won $25,000 in Round 1 and a further $40,000 in Round 2.
- The CFIDS Association of America won $25,000 in Round 1.
ME/CFS Awareness Month Activities (May 2011)
Free screenings of ME/CFS documentary "Invisible"
For ME/CFS Awareness Month, the Irish ME/CFS Association arranged free screenings of the documentary on ME/CFS, "Invisible", in the following venues around Ireland during May 2011:
Tralee, Co. Kerry Meadowlands Hotel
Mullingar, Co. Westmeath
Greville Arms Hotel
Ballyshannon, Co. Donegal
Creevy Pier Hotel
Galway (in conjunction with the Galway ME/CFS Support Group)
Sandymount Hotel, Herbert Road (off Lansdowne Road)
The documentary is one hour long. You can watch a clip at http://invisiblethemovie.com/
To read a review by an ME/CFS patient click here.
All are welcome. There will be a chance to chat to others afterwards.
Launch of updated booklet "A Sufferer's and Carer's Guide to Living With ME/CFS - A General Care Management Guide"
We have launched an updated edition of this booklet. It contains information on management and treatments along with details of other bodies that may be of assistance.
Free copies are available by contacting us.
Information sent to all the Citizen's Information Centres in Ireland
As part of our activities for ME/CFS Awareness Month, we have sent posters, booklets and leaflets to all 108 of the Citizen's Information Centres in Ireland. We know that many people with ME/CFS turn to the Citizen's Information Centres for information due to the many challenges this illness can bring.
TV3's Morning Show featured M.E. (Sept 13th 2010)
TV3's "The Morning Show" with Sybil & Martin interviewed Sarah O'Callaghan, one of our members, about her battle with ME.
This program can be viewed at http://www.tv3.ie/videos.php?video=26890&locID=1.65.370
Open Garden event in aid of ME (June 2010) - Blackrock, Lifford, Co. Donegal
Belinda Mahaffy, who has a friend with M.E., opened her garden (part of the Donegal Garden Trail) again this June with donations taken in aid of the Irish ME/CFS Association.
The garden was first established in 1972 by Belinda’s late mother, Mrs Jessie Mahaffy. Belinda has cared for it since Jessie passed away in January 2008.
Details of the garden can be found at:
There’s a map at:
http://www.donegalgardentrail.com/images/Map_Print.jpg (see garden no. 23b - click to zoom).
Last year’s event raised €880 for the Association - €440 for the research fund and €440 for the general fund which pays for everything else.
Photo: Belinda Mahaffy (left) presents Georgie Reilly with a cheque for €880, the proceeds of the Open Garden event in 2009.
ME/CFS Awareness Month Activities (May 2010)
Talks by Dr. William Weir: "25 years of experience with ME: past reflections, present difficulties and future possibilities" (May 29 & 30 2010)
Dr William Weir, a leading UK ME expert*, spoke in the following locations:
- Dublin: 1pm, Sat May 29. Mount Herbert Hotel**, Herbert Road, off Lansdowne Road, Dublin 4. Admission: 5 Euro. All welcome.
- Galway (in conjunction with the Galway ME Support Group): 2pm, Sun May 30. Courtyard Hotel, Headford Point, Headford Road (just off the Kirwin Roundabout and near the Galway Shopping Centre). Admission: 5 Euro. All welcome.
* Dr. Weir is a consultant physician/consultant in infectious diseases.
Having previously run an NHS ME clinic, he now sees patiently privately in Harley Street, London and Northern Ireland.
Information sent to all Public Libraries
The Irish ME/CFS Association has sent posters and leaflets on ME/CFS to all 359 public libraries, to help raise awareness of the illness, and to try to make information on ME/CFS available to the general public.
A copy of the book, "Lost Voices from a Hidden Illness", has also been sent to all 32 local authority central libraries, with a view to having these books made available to anyone accessing their local library (via the interlibrary loans system).
"Lost Voices" was produced by the UK Charity, Invest in ME, to try to raise awareness of severe ME and the impact it has on both the affected individuals and their families. It is primarily written by people affected by severe ME (i.e. house-bound or bed-bound), whether as sufferers, carers or families.
Further information on the book, and how to order it, can be read here.