Belfast Newsletter, 21 December, 2017, by John McDaid.
“I think that we have not cared for people with M.E. to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that.”
This was the unprecedented public apology issued by Bjørn Guldvog of the Norwegian government in 2011 to sufferers of ME, also known as Chronic Fatigue Syndrome.
Tragically, in most other countries sufferers of this invisible and devastating illness remain cast adrift. In some cases, they are told that they are depressed or that their doctor “doesn’t believe in ME.”
My family heard that firsthand. With no known cause, treatment or cure, ME has been described as the last major disease we know almost nothing about.
I knew nothing about ME in 2012 when my younger brother got sick. Paul was a healthy, happy 33 year old, but that summer he came down with a chest infection which he couldn’t shake off.
Within a month or two he became seriously ill, unable to speak or listen to anything beyond a whisper.
The symptoms included burning chest pain, intense migraines, and a profound fatigue which left him unable to sit up, or even brush his teeth.
The diagnosis, when it came after extensive tests including MRI and CAT scans, was that Paul had ME.
It arrived in a letter from the hospital which read: ‘We are sorry to confirm your diagnosis as Myalgic Encephalomyelitis’.
Full stop, no treatment, no after care, no support.
In the very delivery of this devastating news lay the cruelest twist of this illness – that sufferers are virtually abandoned by the system.
There is little or no guidance provided to doctors by the health authorities and scant funding for research to change the status quo.
That Christmas, the family home, usually bustling and bursting with life, was surreal and silent.
My parents were so afraid and none of us knew what lay ahead – we were left to Google this disease and try our best to understand what was happening to our brother and son.
Paul was confined to a dark, noiseless room, where we brought him meals and watched as he struggled to even raise a glass of water.
That first year the illness was so severe that we could barely talk to him, tell him we loved him, or that everything would be OK. Paul has spent most of the last five years in bed.
Alongside the paralysing exhaustion, any sensory stimulation is unbearable for him. For periods he can’t read or write – even a text message is too much to process.
At his worst, he couldn’t even make eye contact or watch any movement when we brought in his meals.
For most of the day he wears an eye mask, ear plugs, and, over the top of them, industrial ear defenders. When any of his senses are overloaded, as you can imagine, it is a disaster. A lawnmower next door brought on a migraine and crash which took him months to recover from.
Despite the tragic history of ME, for the first time there is real hope – in these five years there has been a sea change in awareness, activism and, crucially, research.
Studies in Norway, Australia and the USA are all pointing to origins in the immune system and the race is on to find the cause and treatment for the millions around the world suffering the effects of this disease on their own.
This is the fifth Christmas Paul will spend bedbound, away from his family, his partner Ciara and their son, Naoise.
He has borne this life changing illness with such strength and determination that all we can do is follow his lead and keep believing science will catch up with ME and that sufferers will finally get the care they deserve.
To find out more about ME, a groundbreaking new documentary, “Unrest”, charts a personal journey very similar to Paul’s and is a window into the history of ME and the future of research.
You can visit www.unrest.film to find out more.