Wednesday 13 November 2019

Most recent update on the HSE Working Group on ME

Our previous blog post in May outlined some details re the start of the process of the HSE Working Group on Myalgic Encephalomyelitis (ME) and shows the Terms of Reference here.

For those who haven't read anything yet re the Working Group it was set up on the back of a recommendation from an Independent Investigation into Christine Fenton's complaint to the HSE about her HSE journey with ME. 


The Working Group have identified the next few steps in their work programme and is getting ready to send out surveys to gather important information about people with ME. It is essential that as many people as possible in the Irish ME Community are reached when surveys, etc, are taking place. 

Letting the Working Group know how you or those not on social media, e.g. not on Facebook, can be reached in a way which meets the specific needs of a person with ME is vital

Can you please share any ideas you may have, or any suggestions which could help someone else with ME, about how the Working Group could reach others not on Facebook or other social media platforms. Please add your ideas in the comments area below, or email to We will collate all information and pass onto the Working Group.

Your ideas matter. 

Please see important message below from the Chair of the Working Group, Marie Kehoe-O’Sullivan via Christine Fenton


Dear Friends,

The national ME working group have now completed a stakeholder analysis and identified the next two steps in our work programme.
1. We are going to continue to conduct and evaluate international literature on ME in order to identify the evidence to underpin our work.
2. We are going to consult with people who are living with ME, their carers, subject area specialists, health and social care professionals, service planner and coordinators. In order to prepare for this consultation, we would like you to let us know of any particular supports that you may need to participate in this process. 

We will develop a survey tool and some of the ways that we have discussed ensuring participation is that we will offer the survey online, in paper, by telephone and where necessary if you are home-bound, in person. 

Please let us know if there are any other supports that you can think of.

Looking forward to hearing from you,
Marie Kehoe-O’Sullivan, Chair of the Working Group



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