Events

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2021

ME/CFS Awareness Month Activities (May 2021)

Webinar

Educational Webinar for GPs: "Key messages for Primary Care on the Diagnosis and Management of Post-Viral Fatigue Syndrome and ME/CFS"

For more info click here.

2019

ME/CFS Awareness Month Activities (May 2019)

Educational event for GPs: "Key messages for Primary Care on the Diagnosis and Management of ME/CFS"

Content:

The main item is a talk by Dr Ros Vallings entitled "Overview of Chronic Fatigue Syndrome/ME". Dr Vallings will also introduce two video clips aimed at GPs by two world-renowned ME/CFS paediatricians on severe ME/CFS and the diagnosis and management of paediatric ME/CFS. The event will also include two 20 minute Q&A sessions with Dr Vallings and a break for refreshments. It will finish at noon.

About the speaker: Dr Ros Vallings MNZM, MB BS is a GP who is recognised as the leading expert on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in New Zealand. She has seen thousands of patients with ME/CFS and related conditions in her practice over the last 40 years and regularly gives educational talks to medical professionals. She was the recipient of the Nelson Ganz Award for Outstanding Clinician by the International Association for CFS/ME (2016). Dr Vallings is the author of three books on ME/CFS and co-author of the IACFS/ME physicians' primer.

Registration: Contact 087-9653431 or email careycarmel2@gmail.com. People are asked to register in advance if possible, though it will also be possible to register on the day.

Accreditation: 2 CPD points have been approved by the Irish College of General Practitioners.

GMS study leave allocation: ½ day

Organised by the Irish ME/CFS Association & the Irish ME Trust.

Dr. Rosamund Vallings Talks

The Irish ME/CFS Association is pleased to announce that it has arranged for Dr Ros Vallings, a leading international ME expert from New Zealand, to give 5 ME/Chronic Fatigue Syndrome talks in Ireland this May. The talks will include questions-and-answers sessions.

Dr Ros Vallings brings a wealth of clinical experience from 50 (!) years dealing with thousands of patients with ME and related conditions. She is also right up-to-date with what happens internationally. She attends the Invest in ME conference each year and the IACFS/ME conferences that are on every 2 years. In November 2018 she attended the CFS/ME International Conference organised by the National Centre for Neuroimmunology and Emerging Diseases in Australia.

She has written three books on the subject in recent years:

(i) 'Chronic Fatigue Syndrome, M.E.: Symptoms, Diagnosis, Management' (352 pages),

(ii) 'Managing ME/CFS: A Guide for Young People' (144 pages) and

(iii) 'The Essential Guide to CFS/ME'.

We intend to sell these books at the meetings.

The talks will take place in the following venues:

Dr Vallings has said she will give a "general talk on the illness, for example, underlying possible causes, diagnosis, update on research, management options, etc."

Admission: €5, on the door, to help towards the costs of organising these five meetings and Dr. Vallings' trip. We don’t take pre-bookings but expect the rooms will be big enough to hold the numbers we expect to attend.

If you would like further information, please contact us.

2018

ME/CFS Awareness Day Activities (12 May 2018)

Free ME/CFS Documentary Screenings

We arranged four free screenings on Saturday, May 12 (International ME/CFS Awareness Day) of a relatively new award-winning documentary on ME/CFS, 'Unrest'. A two-minute trailer is available here.

The screenings took place in the following four venues:

Update: Unrest is currently available on Netflix.

Dr. Mary Ryan Talk in Limerick (incl. Q&A sessions)

Dr Mary Ryan, a consultant who has a specialist interest in ME/CFS, gave a short talk/Q & A after the Limerick screening of Unrest on Saturday, 12 May 2018.

Dr Ryan practises at Barrington’s Hospital in Limerick and the Aut Even Hospital in Kilkenny.

2017

ME/CFS Awareness Month Activities (May 2017)

Recording of Dr Ros Vallings & Linda Tannenbaum talks

We arranged for Dr Ros Vallings from New Zealand to give talks in Dublin, Galway and Limerick in May 2017. A volunteer kindly recorded the Dublin talk which can be viewed on YouTube here and Facebook here. Slides are available here.

Linda Tannenbaum of the Open Medicine Foundation (OMF) also spoke in Dublin. She has released a recording of the same talk at another venue which can be viewed here.

Photo: (from left) Dr Ros Vallings, Vera Kindlon (chairperson of the Irish ME/CFS Association) and Linda Tannenbaum.

Dr. Rosamund Vallings & Linda Tannenbaum Talks (incl. Q&A sessions)

The Irish ME/CFS Association arranged for Dr Ros Vallings, a leading international ME expert from New Zealand, to give 3 ME/Chronic Fatigue Syndrome talks in Ireland in May 2017.

Dr Ros Vallings brings a wealth of clinical experience from 50 (!) years dealing with ME patients. She is also right up-to-date with what happens internationally. She attends the Invest in ME conference each year and the IACFS/ME conferences that are on every 2 years including the one that just took place in Florida last October.

She has written three books on the subject in recent years:

(i) 'Chronic Fatigue Syndrome, M.E.: Symptoms, Diagnosis, Management' (352 pages),

(ii) 'Managing ME/CFS A Guide for Young People' (144 pages) and

(iii) 'The Essential Guide to CFS/ME'.

The talks took place in the following locations:

2016

ME/CFS Awareness Month Activities (May 2016)

Free ME Documentary Screenings

We arranged 4 free screenings during May of a new documentary on ME/CFS, 'Forgotten Plague'. A two-minute trailer is available here.

The talks took place in the following locations:

2015

New Twitter Account

ME/CFS Awareness Month Activities (May 2015)

Dr. Abhijit Chaudhuri Talks

A leading UK ME expert, Dr Abhijit Chaudhuri, gave two talks on ME during ME Awareness Month. The talks took place in the following locations:

Dr. Abhijit Chaudhuri, consultant neurologist at the Essex Centre of Neurological Science, is now arguably the leading practising neurologist with an interest in ME/CFS/post-viral syndromes in the UK and Ireland.

Research on fatigue in common neurological disorders is the main theme of Dr. Chaudhuri's work. He takes a special interest in Myalgic Encephalomyelitis (ME) and did his PhD thesis on it. Dr. Chaudhuri was involved in research looking at the spinal tissue of a few patients with ME.

Following each talk, there was a Q&A session.

Sending Information to Irish GPs

 

GPs are very important in terms of the diagnosis and management of ME/CFS. We have therefore tried to supply them with information over the years, as our limited resources allowed. In 2006, we sent a bundle to all Irish GPs that included the Overview of the Canadian Consensus Criteria for ME/CFS. We also sent a smaller bundle to all Irish GPs in 2008/2009 and sent information on ME/CFS to over 700 GPs in the areas near three talks given by Vance Spence PhD in 2005.

This year (2015) we believe there is useful information available to send to Irish GPs, to enable them to better understand ME/CFS, so we are starting the process, writing to approximately 500 doctors. We hope to write to the remaining GPs when our funds allow.

We are sending them two booklets:

2014

Irish ME Tips Collection now available online

 

 

ME/CFS Awareness Month Activities (May 2014)

Dublin City FM interview

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.

Olivia Crinion, the show's presenter, has kindly sent us a recording. It's 11 mins 13 secs long (5 MB) and you can play or download it here or here.

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.

 

 

Dr. Charles Shepherd Talks

A leading UK ME Expert, Dr Charles Shepherd, gave three talks on ME during ME Awareness Month. The talks, entitled 'ME/CFS - where are we now with research, diagnosis and management?', took place in the following venues:

 

 

ME/CFS/PVFS - An Exploration of the Key Clinical Issues

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.

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.

 

 

Irish ME/CFS Association's Assistant Chairperson is a finalist in WegoHealth Health Activist Awards

 

 

 

2013

ME/CFS Awareness Month Activities (May 2013)

Dr. Rosamund Vallings Talks (incl. Q&A sessions)

The Irish ME/CFS Association arranged 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.

International Consensus Primer on ME

This booklet, which describes ME/CFS for medical practitioners, is now available from the Irish ME/CFS Association for €3 each, €5 for 2. Prices include 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:

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).

2012

ME/CFS Awareness Month Activities (May 2012)

The Irish ME/CFS Association 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 took place in the following venues:

Free Seminar for Youth with ME (13-25) and their parents

 

Dublin - Saturday May 12 2012 (International ME/CFS Day)

Venue: Grand Canal Hotel, Grand Canal Street, Dublin 4

This event gave 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  allowed space and time for those affected to share their experiences and ways of coping and we hope offered some tips and tactics on how to handle everyday life.

 

Screening of "I Remember Me" documentary about ME

 

 

 

 

Galway Awareness Week Meeting

 

Galway - Thursday May 10 201

Venue: Westwood House Hotel, Dangan, Upper Newcastle, Galway City.
http://www.westwoodhousehotel.com/

Sufferers, family and friends welcome.

A few short videos on ME/CFS by Giles Meehan were  shown. These videos are non-technical and include sections explaining the illness to non-sufferers, so this meeting was 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 was plenty of time for tea/coffee and a chat afterwards.

 

Dr. Austin Darragh Talk and Questions-and-Answers Session

 

 

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 info@irishmecfs.org.

 

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.

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.

 

2011

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:

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"

 

 

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.

Poster	Booklet	Leaflet

 

 

2010

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.

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 Dublin and Galway in May.

-* 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.

Further information on the book, and how to order it, can be read here.