M.E. Visibility Action
Tomorrow, Tuesday 14th May 2019 a group of Myalgic Encephalomyelitis (M.E.) patients along with their carers, friends, family members and advocates will be holding a visibility action outside Leinster House on Kildare Street, Dublin, from 11.30am to 2.30pm to highlight the neglect and harm caused to some of the most seriously ill of all patients here in Ireland.
The name of this action is #Call4Change4ME
Many of these patients, some young children, are living lives shut away from the world in dark rooms, too ill to bear even the smallest interaction or movement. They simply would be unable to attend this event, but they will be represented on a display of information tags. The tags will give some information about themselves, where they are from, how long they are ill, etc.
We hope that these poignant images will bring awareness to the Minister for Health Simon Harris TD, the HSE, the media, the general medical profession and the wider public of how utterly devastating this illness is to children as well as adults.
The theme of this year’s awareness event is ‘Invisibility’. There will be a mask-wearing moment during the Visibility Event where a group of attendees will put on masks to highlight so many of the invisibilities associated with ME.
The invisibility begins with the failure to use the correct International diagnostic criteria, – The ICC-ME, with the result that many people are given a ‘throwaway diagnosis’ of M.E. because clinicians are not following the proper route for testing. This does no favours to those with M.E. or those who may be suffering other conditions but get labelled incorrectly with M.E.
The invisibility continues with the lack of appropriate healthcare pathways, the lack of a national policy on Myalgic Encephalomyelitis, the lack of teaching on M.E. for GPs, the lack of M.E. aware Consultant Specialists and the lack of other healthcare personnel who are trained in the complex nature of M.E.
Myalgic Encephalomyelitis is an acquired neurological disease (classified under G.93.3 of the WHO International Classification of Diseases) with complex global dysfunctions including pathological dysregulation of the nervous, immune, and endocrine systems and with impaired cellular energy metabolism. In the most severe cases, patients with M.E. are completely bedbound, unable to feed themselves and unable to bear any stimulation such as light or noise. Yet these patients do not have a care plan pathway available to them within our health service as there are no specialist/consultant services here in Ireland.
This appalling situation needs to be rectified and today is another step in our campaign to get appropriate medical services and a consultant led clinic that can carry out the appropriate testing needed to properly diagnose those with the condition.
This protest has been organised from the beds of some very ill people - people who will suffer greatly from the cardinal symptom of M.E. – post exertional neuro-immune exhaustion (PENE). Many of these patients will pay very dearly and may spend days, weeks and even months afterwards bedbound and dealing with a massive exacerbation of their symptoms.
We would be happy to talk to any media about the event and we would really appreciate any coverage you can give us, especially on May 14th, outside Dáil Éireann.