It was written by Sarah Spendiff and the article does a case study of one person. It is very rare to get an article of this quality in the popular press.
To read the original article, click this blue text
Just in case it disappears from the original site, I will paste the article below:
The silent pain of ME (Irish Independent, 12 January 2009
For Corina Duyn, the loneliness is the worst aspect of her illness. The former doll maker and teacher from Lismore in Waterford has spent nearly a decade alone in her bedroom unable to leave due to her debilitating ME.
Astonishingly, Corina is one of the lucky ones as many others with this condition fail to even get a diagnosis of what's wrong with them. Corina says: "I feel so alone in this illness at times. Nobody really understands what it is like to have this mysterious disease and those that do don't know how to help me. I am sad for myself and sad for the position that I and lots of other people are in, who find themselves at the mercy of the health service."
Up to 12,000 people suffer from ME/CFS in Ireland although, due to the difficulty in diagnosing it, the number could be much higher. ME stands for Myalgic Encephalomyelitis and has been around since the 1930s, but in the 1980s it became a media topic with the disease being given the unwelcome moniker of 'yuppie flu'.
This was due to the flu-like symptoms sufferers reported and because many of those who became ill were high flyers so it was considered a kind of burn-out.
To this day many sufferers find it difficult to be taken seriously and even when they are, there is little the medical profession can do for them because there are few credible treatments available.
The condition hit headlines again at the end of last year after Lynn Gilderdale died of a suspected morphine overdose following a 17-year battle with the illness. Her Irish-born mother Kay was subsequently arrested and accused of her assisted suicide, having nursed her bed-bound daughter over the years. Kay has been bailed and the case will be heard later this year.
Preconceptions
Kay has campaigned for greater awareness of the condition for many years because many myths and preconceptions still exist.
Part of the problem is the issue of whether the origin of ME lies in a psychological cause or in the physical. This question has divided the medical and patient community for decades. In 1969, the World Health Organisation classified ME as a neurological disorder, which makes it a physical condition; and patient groups such as the Irish ME Trust and the ME Association also believe it is a physical condition with very real physical symptoms.However, a UK survey revealed that 50pc of GPs do not believe the condition exists and although many Irish patients say their GPs are sympathetic they are also told there is very little they can do for them.
One of the issues is that there is no diagnostic test to determine if a patient has ME, which leaves some sufferers in a medical void.
For those who are diagnosed after a long process of eliminating any other possible condition, the first line of treatment is often therapy, known as Cognitive Behavioural Therapy (CBT), or gentle exercise called Graded Exercise Therapy (GET), -- although some patient organisations think anti-virals or other medication would be better.
Another reason for this situation is that, in 1988, ME was reclassified as ME/CFS to include chronic fatigue syndrome and is now an umbrella condition incorporating illnesses such as fibromyalgia, fatigue and even depression. For people with those disorders, the recommended treatment of CBT might be useful, but for others with chronic pain and immobilising fatigue who are at the extreme end of the ME/CFS spectrum, they find the suggestion of therapy instead of medicine and science insulting.
Tom Kindlon of the Irish ME/CFS Association says: "ME sufferers in Ireland are largely ignored. Nobody wants to take responsibility for them. There have been no scientific studies into the condition in Ireland for over a decade.
"Part of the problem with ME is that a lot of the suffering is invisible."
In the UK, following on from a report from the CMO (Chief Medical Officer), £8.5m was made available for treatments to help those with ME/CFS. However, the treatments have followed the lines recommended by psychiatrists and tend to be CBT.
Tom says: "Our members have consistently told us that any exertion beyond what they are capable of produces a serious deterioration in their health. The idea that you could gradually get better through exercise is so seductive that most patients have tried it.
"Some are lucky and stop fairly quickly after they realise their symptoms come back if they try to keep going. Others keep pushing themselves even when feeling bad and eventually this leads to a relapse."
Kay Mclaughlin (39), from Ballinteer, Dublin, says that the 'gentle' form of exercise prescribed for her by her doctor and administered through an occupational therapist nearly "finished her off altogether". The former autistic therapist, who was diagnosed with ME/CFS five years ago, says: "The woman couldn't understand that I wasn't able to do it. She would look at me as if I were mad.
"It was only small stretches and bending but after she left I found I could barely move at all and would have to stay in bed. After a few sessions, I got my husband to send her away."
There are several patient surveys that highlight how many ME/CFS sufferers find GET to have a negative affect on their recovery. Despite this, in the UK, GET and CBT are the only recognised forms of treatment for patients which are recommended by the NICE (National Institute for Clinical Excellence) guidelines. This has led to a judicial review of the guidelines being brought by two patients and supported by some medical professors and scientists.
They claim that NICE has not considered all of the information available to them when drawing up the guidelines and that the evidence they did draw on is flawed. The case will be heard next month and, according to Declan Carroll of the Irish ME Trust, the outcome will have repercussions here, too.
"Our Department of Health will generally follow the line of thinking in the UK. We believe the psychiatrists wield a disproportionate amount of power when decisions are made on what research should be funded; therefore, coping strategies which come to the fore are CBT and GET," he says.
According to Declan, after much lobbying of the previous health minister, Micheal Martin, the Health Service Executive (HSE) set up a steering group to examine the 'best care treatment pathways' for people diagnosed with ME/CFS.
"A researcher and assistant were appointed and met periodically until September 2007," Declan says. "A final draft report was compiled following interviews with ME sufferers, completed questionnaires and an examination of the international experiences in other jurisdictions. However, we were disappointed with the result.
"We felt that this report was slanted towards the psychological bias and we could not justify supporting it."
He says that without signing off on it the report, treatments remain in limbo; but he says that is better than being in hell, which would be the case if GET/CBT became the only endorsed form of treatment for ME/CFS in Ireland.
This is a point Annemarie Buckley (43), from Waterford, agrees with wholeheartedly. Having been diagnosed with ME/CFS 13 years ago, Annemarie was encouraged to exercise by her GP.
"I was delighted to do it," she says. "I joined a gym and went there with my mum. I only did a tiny bit, in about two-minute instalments, but I found that a few days later I couldn't get out of bed.
"There is a delayed reaction to exercising when you have ME but I think that it knocked my recovery back months. I believe that pacing is the only thing that works, which is listening to your body and not doing more than you can manage. I fought against my fatigue and that is the worst thing you can do."
After nearly a decade in the ME/CFS wilderness, Corina Duyn is starting to regain some freedom and is now able to leave her house with assistance from a wheelchair. She says that the condition is one of the hardest and darkest the body can take but despite this she didn't let it defeat her.
"I spent so much time alone, unable to read or even to move very much, that I began to notice my surroundings in a unique way. I think it is this that inspired much of my artwork."
Having endured so much, Corina has channelled the experience into creative projects, such as short stories and paintings, that can be viewed on her website www.littlewings.org.
At its worst, the illness caused her so much pain she needed to lie on a pile of duvets on her mattress or get a friend to build a bridge with pillows over her legs so the covers didn't inflict more pain. After her stay in hospital to investigate her condition, the physiotherapist offered her a rubber band to use for exercise.
"I have lived through this disease without any essential support. A rubber band to exercise my muscles is not going to help me overcome the physical obstacles I have to face. I feel let down by the health service."
While the medical profession continues to debate the most suitable forms of treatment for ME/CFS sufferers, new research is continually throwing more light on the condition and its possible cause.
With greater understanding of the cause comes the hopeful possibility of a cure. For many in the first grip of this potentially debilitating condition, the cure cannot come soon enough.
Irish ME/CFS Association, 01-2350965, info@irishmecfs.org
Irish ME Trust, Lo-call 1890 200 912, info@imet.ie
©Independent.ie 2009
Links:
tinyurl.com/88ewvb
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