A Galway man, who was diagnosed with ME/Chronic Fatigue Syndrome when he was in his twenties, is campaigning for an ME clinic to be set up in Ireland.
David, who lives in Woodquay, but wishes to keep his surname anonymous, is spearheading the drive which would see a state-of-the-art diagnostic and treatment facility set up in Galway or in one of the other major centres in the country.
Speaking to this newspaper to mark International ME Awareness Day which takes place today (Thursday ) he says an estimated 40,000 people in Ireland suffer from the condition.
“Many of these people are severely ill and bedridden and many are confined to wheelchairs or housebound. Many are undiagnosed due to lack of accurate medical diagnostic tests and lack of knowledge about the illness.”
Research carried out by the Irish ME Trust in 2003 revealed that more than 80 per cent of GPs would welcome the provision of a dedicated ME centre to which they could refer patients for diagnosis and treatment.
“The complexity of ME, chronic fatigue, fibromyalgia and chronic Lyme disease requires specialist medical doctors with a high level of training, experience and knowledge,” he outlines. “The experience in other countries, especially from private clinics, shows that specialist ME clinics, fibromyalgia clinics and chronic Lyme disease clinics, are the most effective and cost efficient means of treating these complex diseases.”
The Campaign for an Irish ME Clinic is urging the new Government to finance the clinic. Repeated appeals to previous governments were unsuccessful due to a shortage of funds.
“We are keen to get private investors, big private equity funds, or the Irish Government to build an ME clinic in Ireland, which would provide state-of-the-art diagnosis and treatments using best international practices. We have extensively researched doctors, specialists and clinics who have successfully treated ME in other countries and researched what is best international practice for treating the illness. These scientific and medical findings and recommendations would be the starting point for designing the structure and operation of an ME clinic in Ireland.
“This clinic would use the diagnostic and treatment protocols used in the most successful ME clinics where thousands of patients have recovered from ME. The building and operation of this clinic and the provision of medical equipment would be financed by the Irish government or a private clinic or by both the Irish Government and the private clinic, in a public-private partnership. At the moment there is plenty of space and a number of excellent sites inside the grounds of Merlin Park Hospital.”
David, who is in his forties now, is involved with ME groups in Ireland and worked closely with the National Institutes of Health, a biomedical research facility in the US, and the Institute of Medicine in Ireland in their efforts to rename and re-define ME from 2013 to 2015. He is currently involved with them in verifying existing biomarkers for the illness.
He was in his twenties when he was eventually diagnosed with ME. Initially, he began to complain of swollen glands and presented with a very high temperature. He thought it was a flu and “suffered on” for a while but when it did not clear up he attended a GP. He was told he had mononucleosis, a group of symptoms usually caused by the Epstein-Barr virus, an infectious viral disease characterised by fever, a sore throat and fatigue. The virus can be a trigger factor for ME/chronic fatigue, he says.
“I was in bed for two to three weeks. I was wrecked, I was beyond shattered. I was so hot I was eating ice cream all the time. I was getting night sweats and was delirious,” says David, an Oxford and NUI Galway graduate who previously worked in IT management and had always been healthy. He used to jog and played rugby and hurling and was involved in martial arts. “Even when the virus was gone I was still extremely exhausted. I spent periods working and not working and I spent an awful lot of money on doctors.”
Two years after he became ill he was told he had ME. This year he was diagnosed with chronic Lyme disease, a bacterial illness spread by tick bites. Worldwide research indicates that between 40 and 70 per cent of ME patients have chronic Lyme disease, he says.
“By the time I was diagnosed I was completely exhausted. I would get dizzy crossing the road and had this mental fog. Then there were periods when I would be able to work and periods would I would be totally shattered. You would get some improved periods but I have never been able to get back to normal since it happened.
“I stay within certain limits. In the past I pushed myself past these and then I relapsed badly. The condition is frustrating and it does affect your mood. There is a lot of stigma and prejudice associated with ME and you have to deal with that, too. The suicide rates for people with ME are as high as for those with depression. I believe in solution based scenarios, I don’t believe in staying in the problem. I am fixed on scientific research, getting proper funding for it and setting up an ME clinic. That would allow people with ME to get back to normal again.”
