For too long Myalgic Encephalomyelitis (ME) has been known as an ‘invisible illness’ with sufferers left with little support and no medical way forward.
Across the globe there are millions who live with the condition, and with the knowledge that there is no cure. Those millions feel that they are completely absent from the active lives they could have been living.
To raise awareness of the condition and the desperate need for a medical breakthrough local charity, Hope 4 ME and Fibro Northern Ireland, joined together with support groups across the world recently to lobby governments to better recognise the condition and its devastating impact.
Hope 4 ME and Fibro Northern Ireland were invited by Upper Bann MLA Joanne Dobson to hold their demonstration at Stormont this week, giving MLAs the opportunity to learn more about ME.
As part of the demonstration the group laid out a multitude of empty shoes, which were used to represent the individuals absent from their active lives due to the devastating neurological disease Myalgic Encephalomyelitis (ME).
Some of the shoe labels at the Belfast #MillionsMissing demonstration were also from fibromyalgia patients who are supporting this campaign.
This seems appropriate because some diagnostic confusion exists between these related conditions, which is only likely to be resolved with clinical research into diagnostic biomarkers.
The labels have been written by ME and Fibromyalgia sufferers, and include the date they were diagnosed. This serves as a poignant reminder to local MLAs just how many people in Northern Ireland are suffering every day.
Debbie Deboo from Upper Ballinderry in Lisburn was one of the sufferers who attended the demonstration.
Debbie had to quit her job as a teacher after she was diagnosed over a decade ago.
Every day she struggles with the devastating impact of this condition but she is determined to speak out about ME and become the voice for others who cannot speak out for themselves.
“The diagnosis came after I had had a protracted period off work, following glandular fever,” explained Debbie.
“I was working full-time as a teacher at one of the best schools in southern England, in Essex where I lived at the time.
“I wasn’t getting better and I was getting weaker and weaker and more and more frustrated and puzzled at my symptoms.
“I went to the doctors and broke down in tears because I didn’t know what was happening to me.
“My GP arranged an appointment for me with a specialist, Dr DG Smith. He diagnosed ME and said that I displayed the classic symptoms.
“As I had been ill for over a year at this point it was, in a way, a relief to have a name to attach to my condition, but as I learned more about ME I was also fearful for the future.
“From working full-time I found myself working no more and losing the ability to engage meaningfully in society,” explained Debbie.
“I was now in a wheelchair and essentially housebound as I had very few “good” hours of energy each day.
“Everyday activities were becoming harder and harder - shopping, socialising, even just getting ‘out and about’ were becoming rarer activities with each passing week and month.
“I had lost my job, and now I was losing my friends and my independence - no matter what I wanted to do I was reliant on others to help me.
‘‘I felt embarrassed and frustrated, and angry - I had always been so independent, fiercely so, and yet now I couldn’t even go out a buy a loaf of bread on my own. Before I got ill I enjoyed an active social life with my husband and friends.
“I lived in London and lived life to the full. I went to gigs, pubs, restaurants, the theatre, festivals, enjoyed reading books, listening to music. All of that, all of it has gone.
“I can’t even read books anymore as I lack the concentration.
“Over the course of the 10 years since that original diagnosis, my symptoms have got progressively worse - now I can barely manage a few steps, and sleep more during the day than I ever did previously.
“If I do engage in a small activity during the morning (for example, being taken to the shops in my wheelchair) then I am worn out on my return and my afternoon passes in a painful haze of sleep and grogginess.
“The physical pain is always there - the exhaustion that affects ME sufferers is only one of the symptoms, there is also a relentless ache throughout the body, and a grinding, dull pain that gnaws at one’s legs, arms, hands.
“ME really does represent the profound, systemic collapse of the body, a drawing down of function and ability, leaving the sufferer lying prone in pain, barely able to lift his or her hands or head, staring upward at the ceiling, and wondering when will relief ever come? And so that, of course, has a massive, catastrophic effect on one’s psychological state.
“Losing my job, my independence, my friends, my ability to live my life the way I want to, and having to rely on others for the smallest things, has caused me great emotional distress and, yes, despair.”
Debbie has been shocked by the lack of support available from the medical community and that is one of the reasons she attended the Millions Missing demonstration, in the hope of putting pressure on local governments to better recognise and address the condition.
‘‘The absence of any effective support from the healthcare services, the lack of a cure for ME or any reasonable chance of one any time soon, and the slow but progressive deterioration in my physical abilities and continued and increasing cognitive dissonance (the impact on brain function in ME sufferers has been likened to early-onset Alzheimer’s) has all very badly effected my mental health.
“I wanted more than just the rubbish I had been forced to endure for the past decade.
“Something good can come from even the darkest moments, and now I have renewed energy to speak out about what ME sufferers need - to be heard in society, for our illness to be taken seriously and for healthcare professionals to put their efforts into finding a cure, and not in patronising us with talk of ‘pain management’ and ‘gentle exercise’.
“I am determined to be a voice for those who are suffering in silence.
“As I say, I will speak up about my illness, and make sure that ME sufferers are heard.
“What we want are not anti-depressants, nor being pushed from waiting list to waiting list, but for our illness to be treated with the proper seriousness that it deserves and for genuine attention to be placed on active research to find a cure.”
Worldwide it is estimated that 20 million people suffer from ME, with 7,000 of those living in Northern Ireland.
Some ME sufferers are so severely affected that they become unable to leave their homes.
A number end up lying in darkened and eerily quieten rooms due to their constant and severe ‘flu-like’ symptoms.
The plight of these individuals has been likened to a ‘living death’, with only palliative-type care available to ease their years of suffering.
Yet research funding from governments around the world is meagre. Somehow the condition has become conflated with simple fatigue, and because patients are often too ill to leave home, so sufferers have become side-lined and forgotten.
Support groups are especially important to patients, when NHS care is limited.
Hope 4 ME & Fibro Northern Ireland has a growing membership. Some doctors even refer their patients to the group which meets on the first Tuesday of each month in the Mourne Country Hotel, Newry at 7pm.
Homebound patients can watch guest speakers via live-streaming on a private channel.
The group also offers a supportive Facebook group, newsletters and links to other organisations.
In addition, Hope 4 ME & Fibro NI organise annual medical conferences, with international speakers selected from those working at the fore-front of biomedical research into ME. The conferences carry CPD points from the Royal College of Physicians and play a significant role in helping local professionals to update their knowledge of both ME and fibromyalgia.