From the Belfast Telegraph, 9 February 2010. (Story by Stephanie Bell).
Ballynahinch man Horace Reid thought he just had a very bad dose of ‘flu but, as he tells Stephanie Bell, after 17 years largely confined to his bed, he’s still waiting for it to go away.
Co Down man Horace Reid has a deal of sympathy with Kay Gilderdale, the woman who went on trial accused of the attempted murder of her daughter who was suffering from ME.
For Horace has also had the condition — astonishingly for the exact same period of time, 17 years — as Kay’s daughter.
Lynn Gilderdale was found dead at her home in December 2008 and mum, Kay, later admitted in court aiding and abetting her to take her life. She was given a 12 month conditional discharge last month.
Horace said: “There is a steady suicide rate among ME patients in the UK. It is a unique disease and long term and, like Chinese water torture, it is chronic and slow and the medical profession can do very little for you, so I can quite understand why Lynn or any ME patient can think the situation is hopeless and decide to end it.”
He knows the terrifying effects of ME all too well. Seventeen years ago life was good for him. He loved the challenges of his well-paid job as a cardiac scrub nurse and had just bought himself a new house in Ballynahinch which he was enjoying putting his own stamp on.
His weekends were spent happily pursuing his many passions of hill walking in the Mournes, researching local history and cooking for friends.
It was a simple, but to Horace, idyllic existence.
Then over the course of just one weekend, without any warning, his world came crashing down around him. Suddenly this once active man in his mid 40s couldn’t even muster the energy to get out of bed.
Now, 17 years — and many, traumatic, exasperating and pain filled days later — Horace, 62, is still forced to spend almost all day, everyday, lying in bed. The job he loved is long gone and along with it, his comfortable lifestyle. Even something as simple as reading a favourite book is now a struggle.
But to Horace, by far the biggest frustration is the attitude which still prevails within certain areas of the medical world to his condition (myalgic encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS).
He said: “There is still a great stigma attached to it and because of that, many of the 7,000 other people in Northern Ireland who suffer from ME, are afraid to talk about it.
“There is no treatment and no cure and no one can give you a prognosis and without research there isn’t even any hope.
“The medical politics behind it has caused great difficulty for sufferers and many have gone undiagnosed which in itself creates problems for those patients.”
Horace says he experienced the scepticism first hand shortly after he was struck by the illness.
He said: “It was in June 1993 that it hit me with no warning.
“Suddenly I found myself dealing with something that I had never experienced before and no one could tell me what was wrong.
“It was like a very bad flu and like any flu I was waiting for it to go away and now, 17 years later, I’m still waiting for it to go away.
“When I did eventually go to my GP I was shocked by his reaction. He was suspicious of what I was telling him and asked if I was trying to get medical ill-health retirement. I couldn’t believe what I was hearing, especially as I hadn’t set foot in my GP’s surgery for 20 years.”
Fortunately for Horace his GP did refer him to an infectious disease specialist who was familiar with ME and was able to give him a diagnosis — something he said the vast majority of sufferers never get.
“I was lucky in that I am one of the few ME patients to get quickly to a doctor experienced in the condition and, at that early stage, he warned me that it was going to be long term.
“It is such a shock. I was terrified of losing my job as back then any degree of sick leave would attract attention.”
Eventually that fear was realised and despite the financial loss he managed to secure early retirement.
He said: “I was cut down to about 5% of my previous self with no question of working or being able to get back to work.
“Even though it meant I would have a very small pension it was the only way I could have survived financially, and so it was a case of half a loaf being better than no loaf.”
Horace was completely bedridden for the first five years and dependent for some time on his elderly parents who were both in their 70s to look after him.
He said: “My parents were at a stage in their lives when I should have been looking after them and I felt guilt for a long time that they had to care for me.
“I would get cabin fever and every two weeks would go out of the house for a couple of hours, but there was a huge cost in the form of a migraine I couldn’t handle for the next 48 hours.”
Bedridden with acute flu like symptoms, headaches and no energy, Horace was unable to function beyond managing to put ready-made meals in the microwave.
He likens it to the disaster in Haiti: “Just like when you are in the middle of a catastrophe like Haiti you forget about routine and go for the only major essential, which in my case was food.
“I used to keep my house immaculate and it became chaotic because it just wasn’t something I could think of trying to manage.
“I loved to cook and have people round for meals and suddenly I had become extremely dependent on the microwave. Ready meals were my salvation.”
As someone with a sharp intellect and a mind that likes to be challenged, Horace has also had to deal with the loss of his cognitive abilities. He explains: “I could have read a novel in 36 hours before and devoured TV documentaries and feature films and wrote at length as a historian for my local paper.
“After the ME hit me I couldn’t read. By the time I got from the top of the page to the bottom I had forgotten what I had read.
“I have discovered if I go over the text and underline key sentences it gets it into my memory.
“It is a very slow process but I am working with an infinite timescale with nothing else to do, so little by little I have been re-educating my damaged brain.
“My saviour was the editor of my local newspaper, The Mourne Observer, Terence Bowman, who is very patient and has allowed me to contribute articles again, even though it takes me a long time to put a small item together.”
Today, Horace is continuing that painfully slow rehabilitation process despite still being forced to spend most of every day in bed.
He is a member of the Northern Ireland ME Association, which offers free membership to patients and is campaigning for better recognition and treatment services.
He explains some of the difficulties the Association is lobbying against: “For me my story isn’t important — I’m just one poor sucker among a quarter million more ME victims in the UK.
“The more pressing and primary issue is that things aren’t going to improve for the ME patient population, until the associated NHS medical politics are tackled first.
“The National Institute of Clinical Excellence (NICE) published NHS guidelines in 2007 in which they stated that the cause of ME was unknown.
“Despite that, there is a very powerful psychiatric lobby which has been going since the 1970s who insist it is a psychiatric condition.
“They are bulldozing ahead with their agenda which sufferers would totally refute and in which they suggest the condition should be treated with psychotherapy.
“The uncertainly about the future is a terrible thing for sufferers and the scepticism is hard to deal with.
“Many feel they are being seen as malingerers and have never had a diagnosis.
“There are more ME patients in the UK than MS patients yet we do not have anything like the same resources.
“I had a wonderful life taken away from me and I want it back. I worked in the NHS and saw hundreds of patients cured and I want that as well. Like all ME patients I want a level playing field and I want to see the condition researched and funded.”
Horace closely followed the tragic case of Kay Gilderdale. He said: “If there is one positive outcome in this terrible case it is that the public now know how serious an illness ME is.
“Just like Lynn there are many thousands preserved in a living death and the Gilderdale case will have raised awareness of this neglected section of the population.
“Looking at the case as someone who has had ME for as long as Lynn did, you look at what placed her mum in that situation where she assisted her daughter’s suicide.
“That Lynn was so seriously ill and neglected by the NHS and allowed to get into a terrible state whereby her mother was placed in the impossible situation which came out in court, is horrific.
“As well as losing her daughter and enduring 15 years of purgatory, Kay Gilderdale was also subjected to an unnecessary trial.”
Working to find a cure
Last year the Northern Ireland ME Association enjoyed a major breakthrough in its lobbying of local government over many years.
In what has given the 7,000 sufferers here a major boost, a Northern Ireland ME Working Group was set up at Stormont in November with 12 MLAs on board.
The association’s Jo Calder said: “It is a fantastic breakthrough and we will be working to establish a full specialist facility here which will offer diagnostic and treatment services, satellite clinics throughout the province and a separate adolescent service.”
Northern Ireland has just one specially-trained member of staff to cope with all 7,000 ME patients.
Jo added: “This lack of expertise means GPs and patients are left to struggle on as best they can.”
With no cure and no effective treatment, the association also wants more active research to be carried out.
Local doctors are leading the way on research, albeit elsewhere in the world.
A cure is being pursued by Dr Derek Enlander (ex-Belfast) at Mount Sinai Hospital, New York; Dr Jonathan Kerr (ex-Belfast) at St George’s Hospital in London, and Dr Vance Spence (ex-Strabane) at Dundee University.
Jo said: “These Ulster doctors are researching the biological causes of ME, in the hope of finding a cure.
“Dr Kerr, for instance, has found that ME patients have an abnormal gene profile, which may respond to treatment.
“Unfortunately, these doctors receive no Government funding, and their research is paid for by patients themselves.”
The NI MEA also wants the focus of NHS treatment and research to shift from the psychological to the biological.
For more information contact the association at 28 Bedford Street, Belfast, tel: 90 439831 or log ontowww.nimea.org