Background
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.
