December 6, 2002
High Profile Sufferer: Up to 6,000 ME sufferers in Northern Ireland, like round-the-world yachtswoman and author Clare Francis, are now being recognised as suffering with the debilitating illness
Source: the Irish News (Belfast, Northern Ireland) via Co-Cure
By Anne Madden
Health Correspondent
A light flashed at the end of a tunnel of ignorance and enigma for thousands of ME sufferers at a conference in Belfast on Saturday, November 2, 2002.
World-renowned clinician Professor Kenny De Meirleir from Belgium discussed the findings of his research which demolishes the long-held theory that ME is psychosomatic.
The debilitating condition, which affects around 6,000 people in Northern Ireland and 240,000 across the UK, has a range of symptoms chiefly characterised by chronic tiredness.
For years ME (Myalgic Encephalomyelitis) or Chronic Fatigue Syndrome (CFS) has been mocked as the 'yuppie flu' suggesting that sufferers are all middle class neurotics. However, the results of Professor De Meirleir's £3 million research offer a powerful case for ME being a biological, not a psychological problem.
The professor, who is an advisor to the US and Canadian governments on ME, told the conference at Queen's University, Belfast that the difficulty of the disease is that it is not one but several conditions.
He described how there are three main sub-groups of the disease, from mild to severe, with a variety of symptoms. But the factor that is common to them all is a disordered immune system.
"Innate immunity dysfunction would be a more accurate name
for CFS," he said. Professor De Meirleir described how there are a number of different mechanisms which trigger the condition, but he has no doubt that CFS is an immune disorder. "No two people have the same disorder," he said.
"In some people it is stress plus exposure to heavy metals. In other cases people may have had a long-standing stress plus a viral infection which wasn't treated properly."
The professor offered hope to many sufferers that if CFS is diagnosed in its early stages it can be treated with the right combination of therapies. However, the most severe cases who suffer for more than 10 years can suffer permanent damage to their immune system which greatly enhances their risk of cancer.
"The pathology of the disease is not a mystery anymore," he said.
"The Americans have now worked out the entire genome of
CFS. Unsurprisingly, all the genes are related to the immune system. We can say for certain that CFS is an immune disorder.
However, he argued that genetic predisposition is a weak
factor in the disease, although it is about twice as common in women as men. Exposure to heavy metals or organophosphates , contracting a lymphotropic virus such as Dengue fever or EBV and long-standing mental or physical stress can all be trigger factors. His research also reveals that 6.4 per cent of ME patients began suffering symptoms 40 to 72 hours after a blood transfusion.
Professor De Meirleir is now working on diagnostic tests for
ME conditions.
"I think in two or three years time we will be able to give every GP a handout on how to test accurately for the three categories of patients," he said. He described how current studies on Gulf War syndrome could also improve knowledge about CFS as it is a very similar disorder.
"Victims of Gulf War syndrome got a huge immunological
shock after being given 22 vaccinations at the same time,
some of which were experimental," he said. The professor predicted a major research breakthrough in the United States where an immune drug therapy, Ampligen, is being tested to treat mild CFS conditions.
The disease is more widely recognised in the United States mainly because of the stronger patient lobby there. However, Chris Clarke, from UK group Action for ME, told the conference that progress had recently been made in recognising the disease and educating GPs.
A report was carried out by the chief medical officer (CMO) for England which recognises the serious impact of ME and describes treatment strategies.
Every GP in England has been recommended a document
with guidance on the management of ME which was published
in June by the charity and is based on the CMO's working
group report.
However, Mr Clarke said this guidance needs to be approved
by the CMO for Northern Ireland.
Derek Peters, director of the Northern Ireland Campaign for ME/CFS (Healthcare) who organised the conference, called for better treatment under the NHS. "There is now a mountain of evidence that this is an organic illness," he said.
"It is time people with ME had their condition investigated just like people who present with other diseases such as cancer"
For more information contact the Northern Ireland Campaign
for ME/CFS (Healthcare) on 028 9022 9016.
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