This 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.
#Call4Change4ME will take place outside the Dáil between 11.30am – 2.30pm to highlight the neglect and harm caused to seriously ill people with M.E. in Ireland.
Deputy Kenny said: “Many of these patients, some of whom are 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 not be able to attend this event, but they will be represented in a display of information tags. The tags will give some information about themselves, where they are from, how long they are ill, etc.
“The organisers of the event and I 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 during which a group of attendees will put on masks to highlight the many invisibilities associated with ME.
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 the health service as there are no specialist/consultant services here in Ireland.
Gino Kenny TD said: “This appalling situation needs to be rectified and today is another step in the 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. The Government must act immediately to introduce care plans to diagnose, manage and treat people with this debilitating illness.”
