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What It Was Like Going to an ME/CFS 'Millions Missing' Protest

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I was part of something really special today as hundreds of myalgic encephalomyelitis (ME) patients and supporters came together for the 25th anniversary of International ME Awareness Day and organized the Millions Missing Dublin protest outside our government building — Dáil Eireann. While many patients were not well enough to attend the protest, they sent a pair of their shoes with a written note about what part of their lives they are missing from due to the invisible illness. It was a powerful message that may finally be heard by the government and Health Services Executive (HSE).

I got to meet loads of other ME patients and their supportive family and friends all rallying around to help blow the “invisible” off this debilitating illness. Some were in wheelchairs, others with canes, and lots more going strong in camping chairs. This was no easy feat for someone with ME on a good day, let alone sitting in the cool shade outside the government buildings. I only stayed for an hour and my whole body shook uncontrollably inside for the rest of the day with weakness, migraine and of course feeling ice cold inside. Can you imagine what it took out of the others such as Camilla Cruise — one of the organizers — and all the other warriors who put their everything into organizing media coverage, signs, T-shirts, flyers, not to mention traveling to the capital from all over Ireland.

millions missing protest

millions missing protest in dublin with rows of empty shoes on ground

man and woman at millions missing protest

Camilla told me, “A number of TDs met with us outside and want to read the information pack we have prepared and will bring questions to the Dail on our behalf. And to work with us, to help us improve the services for ME patients. It was a very positive response, although we realize as patients we have a long road ahead on this matter, it was a positive first step and big increase in visibility for our patient community giving new hope.”

Another member of ME Ireland, Moira Dillon informed me, “The HSE have responded to the generous invite of Hope for ME and Fibro in Northern Ireland to attend their conference which will have keynote international speakers on the latest biological research as well as explaining the flawed science behind the current recommended treatment of graded exercise therapy (GET) for ME. We hope that this information will assist the HSE in their current review of their treatment guidelines for ME.”

There is currently no specialist clinic or consultant in Ireland for any of the thousands of patients. Most patients are lost between rheumatology specialists, neurologists, immunologists — you name it, we’ve been to it. We are on long waiting lists to even get into a pain management clinic. Many people with ME have been unable to work and are subjected to a very limited public health system, where overwhelmed and misinformed doctors tell patients, “There is nothing more I can do for you, you’ll have to just get on with it.” These kinds words are utterly devastating to hear, especially when you are in so much pain and feeling so vulnerable, possibly even dealing with depression and anxiety; it can all get too much for a person to deal with alone.

So it is with great hope today that we joined forces and raised our voices to get a shoe (or hundreds) in the door and ear of our government’s headquarters.

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Originally published: May 12, 2017
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