Tuesday 17 December 2019

Positive Meeting with Health Minister re Future of Care for Myalgic Encephalomyelitis (ME).

On Wed 4th December 2019 members of ME Advocates Ireland (MEAI) met with Minister for Health, Simon Harris TD.

ME Advocates Ireland members with Declan from Irish M.E. Trust
Declan Carroll, Irish M.E. Trust with some members of MEAI:
Christine Fenton, Rachel Lynch, Joan Byrne


We had requested this meeting in May 2018 in order to impress upon the Minister what the real lived experience of people with M.E (PWME) is in Ireland today.
Many of you will know that we have consistently lobbied the HSE and Dept of Health in recent years for better medical education, adoption and use of the ICC-ME diagnostic criteria, better supports for PWME, removal of inappropriate treatment protocols (CBT and GET), the need for expert medical supports at Consultancy level, the need for appropriate paediatric supports including transition to adult services, etc.

We have raised numerous Parliamentary Questions through our TDs and have succeeded in raising the profile of Myalgic Encephalomyelitis in the public sphere. Many of the responses to our PQs by the HSE gave incorrect information about M.E. and this gave us an opportunity to challenge that misinformation within our health service.

We have also organised several visibility events outside Leinster House over the last number of years and this has resulted in us building up good relationships with many politicians and key influencers and we would like to thank all M.E. patients, carers, family members and friends who supported these events in any way.

HSE M.E. Working Group

Alongside all this, an independent investigation recommended the HSE create an M.E. Working Group. (We have blogged about this previously).  Through the HSE’s ‘Engaging Patients & Families’ programme, ME Advocates Ireland (MEAI) members expressed their interest and were accepted onto this Working Group. MEAI members ensure we are referencing international best practice to ensure comprehensive guidelines result from the work of the Group to establish what expected best practice should be for those living with M.E. in Ireland.

The investigation recommendations about M.E. essentially became the Working Group ‘Terms of Reference’ which define the remit of the Group.

The importance of including both Irish M.E. Charities was upheld by the MEAI members at the first meeting in May.


Meeting with the Minister for Health

We were finally offered a meeting with the Minister for Health, Simon Harris TD, on 4th December and the following gives you an idea of what we discussed at that meeting. Also represented at the meeting were officials from the HSE and the Dept of Health and Noel Rock, TD for Dublin North West.

The Minister was very welcoming, responsive and interested in hearing what we had to say and asked some very key questions, giving us the opportunity to further expand on many of the issues raised.

The following key areas were raised and discussed at the meeting:

·     Diagnostic criteria and the need to use the International Consensus Criteria (ICC-ME) to avoid the potential for misdiagnosis amongst the patient group.

·     The lack of education amongst GPs and other health care professionals about the aetiology of M.E. The role of the ICGP in ensuring appropriate education and training is made available to GPs.

·     The disadvantage patients experience as a result of not having available expertise to treat and support them.

·     The need for the HSE to operate from consistent, correct information on M.E.

·     The dangers of real harm being caused to people with M.E. as a result of recommending inappropriate treatment protocols such as Graded Exercise Therapy and Cognitive Behaviour Therapy

·    The need to end inappropriate referrals to psychiatry.
The disadvantage experienced by PWME as a result of ‘dismissive attitudes’ often resulting in them choosing not to see their GP or Consultant or even attending the Emergency Department.

·     The case for an M.E. specialist consultant.

·     The issues children with M.E. are faced with in Paediatric Services.

·     The role of the M.E. Working Group in ensuring that the HSE carry out a comprehensive International Literature Review of research, as well as including patient experiences, to reduce the HSE reliance on the UK NICE ME/CFS guidelines and the review of those guidelines due next year. In this respect the Minister stated his clear support for the M.E. Working Group. The Minister offered some suggestions about possible measures to safeguard M.E. patients in the interim and agreed to follow up on these.

A powerful video message from severe M.E. patient Noreen Murphy was played to the Minister.

The Minister asked some very key questions and asked for some time to reflect on our meeting and committed to meeting us again after the next M.E. Working Group meeting in January 2020.

We look forward to meeting him again in the New Year and following up on some of the issues discussed.

Thank you to all our advocates whose hard work made this possible. We have something now to build on and we continue to be committed to ensuring that M.E. patients in Ireland are safe from harm and are treated with dignity, respect and correct knowledge by all within the healthcare system.

Piece written by Joan Byrne, ME Advocates Ireland (MEAI)

(For further information about the issues raised, please visit the relevant pages on this blog)