Thursday, 25 January 2018

Call for Change. Let's Talk about ME. Myalgic Encephalomyelitis


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Some members of ME Advocates Ireland (MEAI) attended Leinster House to give a 'Call for Change' presentation on Myalgic Encephalomyelitis (ME) to TDs and other Government Reps on January 24th, 2018.
The event which took place in the AV Room in Leinster House was hosted by Gino Kenny TD.  FibroIreland members also attended and the presentation included speakers from each group followed by an informative questions and answers session.






Many thanks to Rachel Lynch of FibroIreland for asking us to join her at this awareness and educational event. The AV room was reasonably full with Government Reps, Senators and representatives of other health groups who listened to Rachel Lynch (FibroIreland), Joan Byrne, Moira Dillon, Christine Fenton and Camilla Cruise, all members of MEAI.

















Afterwards, there was an opportunity to have a press photoshoot with Still Waiting Ireland campaign members who were having a press launch outside. Thanks to Cyril Brennan of the Still Waiting Ireland campaign for your support. Members of MEAI were interviewed by Journal.ie who put out a brief publication online re ME and the lack of government support.











There's so much more to do for ME patients, there's a long road ahead to get change, but we received a great response from those who attended who had no idea of the severity of the illness or our situation in terms of lack of healthcare pathway, lack of national policy, etc. We received a commitment from Gino Kenny and PBP to continue supporting our efforts.











Senator Grace O' Sullivan Green Party who attended the Call for Change event.











Prior to the awareness event ME patients from various support groups were asked to write to their TDs to invite them to the event.




Here's a copy of  the invitation forwarded to all the politicians:



Call for Change: Fibromyalgia and Myalgic Encephalomyelitis (M.E.)
Date: January 24th, 2017
Time: 11am
Venue: AV Room Leinster House

Dear TD


FibroIreland and ME Advocates Ireland (M.E.A.I) would like to invite you to our Awareness and Educational event in the AV room, Dail Eireann Jan 24th at 11am. We will have 6 speakers on the day and a Q and A after.

In Ireland Fibromyalgia is estimated to affect between 90,000 and 180,000 people while Myalgic Encephaloymelitis (M.E.) affects approx. 12,000 to 14,000 with no clear pathway to care, or the necessary supports to enable patients to live independently in the community.  There is no education about M.E. among medical professionals and no specialist facilities or treatments. This large cohort of patients and voters are left in the dark with nowhere to turn, abandoned by the HSE. 

These patients are at a monumental disadvantage by having a chronic illness that falls between the cracks of HSE knowledge and services that require those with M.E. to negotiate an additional hurdle to the usual challenges faced by those living with a disability applying for essential supports, as we wait for the UNCRPD to be ratified.
            
 Fibromyalgia and M.E. patients need your support and help in your role as their public representative. We need your help to hold the HSE to account to provide the health care needed by these patients while also bringing education in line for medical professionals on these complex conditions.

Added to this there is huge financial burden placed on patients who often have great difficulties accessing financial assistance and social welfare, where there are huge delays processing claims but also large numbers of refusals and even more lengthy appeals processes. We need to push for changes and improvements to this system to lessen the already heavy burden and stress on these chronically ill patients.


We look forward to seeing you in attendance on Jan 24th and engaging with you in the near future on this matter.


Yours sincerely  

FibroIreland and MEAI      

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