It is estimated that there over 7000 ME sufferers in Northern Ireland, and the figures for Fibromyalgia are even higher. Currently, there are no effective treatments, yet many M.E. patients remain bed bound from onset and disabled for life. These illnesses affect men, women and children of all backgrounds and the cause is unknown.
Myalgic Encephalomyelitis, sometimes referred to as Chronic Fatigue Syndrome (ME/CFS); is a neurological and autoimmune disease characterized by overwhelming fatigue, pain, headaches, cardiac
symptoms, immune disorder, dizziness, and balance problems.
Fibromyalgia (FM) is characterized by severe musculoskeletal pain and tenderness in many areas of the body, along with fatigue and sleep dysfunction, generalized or regional stiffness, and in some cases neurological and cognitive symptoms. The condition is long-term and painful.
Hope 4 M.E. and Fibromyalgia Support Group are actively campaigning for better services in Northern Ireland.
2020 May Awareness ZOOM Meeting on 12th May
2017 May Awareness event on 13th May in Newry
Also #MillionsMissing empty shoe demonstration
Celebrating May 12th - 2016
Thank you to ALL who bought and sold May 12th awareness ribbons this year. So far, a massive £298 has been raised!
We couldn't have done it without our nimble fingered ribbon makers; Shirley Briggs, Rosie Bradley and Valerie Crozier. This money will be used for printing educational information being included in our new presentation packs for professionals.
Additionally, more visual info is also being printed for new member's packs to help patients better understand the wide range of symptoms of ME and Fibro.
We feel this will be beneficial to newly diagnosed patients who are usually feeling confused and frightened by some of the many weird and wonderful symptoms these diseases throw at us!
From 2015 - It was wonderful to see all the global 'Light up the Night' this year! It looks like this event is growing at a mighty rate thanks to all the hard work from patients all over the world.
It's been a very busy year so were late getting organised and the last confirmation of one event arrived at 10.15pm on 11th May so you can imagine the panic!
All Light up events were well supported and two severely affected members did local newspaper articles.
The atmosphere on May 12th held the usual excitement and we were delighted that a number of Government officials joined us and local journalists took photos and notes of what the evening was all about.
Our new Super Council for Newry, Mourne and Down proclaimed the day as official May 12th Awareness for all ME and FMS patients in this part of Northern Ireland and the proclamation was displayed on their webpage.
A local MLA read the Proclamation at our monthly meeting, much to the delight of our members attending. We had some buffet food including cupcakes with edible butterflies and sold awareness ribbons with nicely decorated broaches.
108 Awareness ribbons were sent to Jo-Anne Dobson MLA who distributed to ALL MLAs in Stormont Buildings where many Government officials wore them to show support for all patients in N.I.
I have contact with the teacher of an orphanage in Pakistan and the children even sent support by making and wearing awareness ribbons and also lit candles as their light up event. I was deeply honoured and moved by this token of support from those who have nothing yet took the time to send such lovely thoughts.
Half of the income from ribbon sales is being donated to The 25% Group, based in Scotland, this group dedicates its resources to the most severely affected bed bound patients.
We are already making plans for 2016 to hopefully make the events bigger and better than ever before and we also hope to link up with groups and friends from The Republic of Ireland and the UK mainland. Some recovery time is still needed but it will be full steam ahead towards 2016 when able!
MAY 12TH 2015
Lord Mayor of Newry
May 12th each year is ME/Fibromyalgia Awareness day.
Our support Group successfully requested the Lord Mayor of Newry, Michael Ruane, in 2014 to proclaim this day as Newry's official ME/FMS awareness day. This proclamation has been repeated for 2015 and 2016
MAY 12TH 2014