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The Scotsman – 20th May 05

Scottish Scientists find ‘key to curing ME’

By Ian Johnston, Science Correspondent

 

A remedy for the debilitating condition ME, once derided as “yuppie flu”, could be available in as little as a year after groundbreaking Scottish research. 

A Glasgow University  team has discovered a malfunction in sufferers’ genes which appears to prompt their immune system to “work overtime”, making patients extremely tired.

The lead scientist, Dr John Gow, said a cocktail of drugs could be used to “turn off” the genes, allowing patients to live a “fairly normal” life.

The university has already patented the genes involved as a means of diagnosing the condition, also known as chronic fatigue syndrome (CFS), quickly and cheaply.

The disease has gradually gained acceptance and in 2002, Professor Sir Liam Donaldson, the chief medical officer for England and Wales, said that “CFS/ME should be classed alongside other diseases such as multiple sclerosis and motor neurone disease.”

Dr Gow, a senior lecturer in clinical neuroscience at the university, mapped all 33,000 genes in CFS sufferers and then compared them with the genes of healthy people.  Dr Gow, who works at Glasgow’s Southern General Hospital, said they found CFS sufferers had a particular kind of “unusual gene expression.”

“This means the genes are switched on or off at an inappropriate time. We have identified a number of genes that are wrongly switched on,” he said. “It looks like the immune system is working overtime when it shouldn’t be, making the patient tired.”

Every cell in the body contains the same 33,000 genes, but only about 10 per cent are actually doing anything at any one time. There are genes related to the production of liver proteins in brain cells, for example, but these should be “switched off” because liver protein is not required in the brain.

Drugs can be used to control chemical pathways that act on the genes and Dr Gow said he had identified ones that could be used to regulate the over-active genes in CFS.

These drugs are already on the market for other conditions and could be given to CFS sufferers within a year if tests prove positive.

 

Dr Gow stressed that the drugs had to be tested in practice. “This is not a major breakthrough yet, but it is a big step forward,” he said.

A prototype diagnostic testing kit has already been developed which would give doctors “a yes or no answer” about whether someone had the condition. Currently it takes about six months to make a diagnosis.

However, Dr Gow said he was currently “going nowhere” because his funding had run out.

Dr Neil Abbot, of medical research charity MERGE, which works on ME, said: “This is very exciting work. The analysis of genes is one of the most interesting modern areas of research which has the potential to come up with a cure, but this may be in the long term.”

John Breward, 51 of Bruntsfield in Edinburgh, contracted ME after a severe case of viral pneumonia 20 years ago.  The former research scientist is now housebound and on bad days bedridden, suffering from extreme exhaustion, pain in his muscles and joints and migraine-like headaches.

“The possibility of a cure… that would be absolutely wonderful,” Dr Breward said.

“We have had false dawns before with people saying they’ve diagnostic tests and treatments which haven’t panned out – so I’m cautiously optimistic.”

 

 

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Ayr Advertiser Series

13th April 2005

By Fariha Karim

 

ME Group Launches in Troon

 

MSP Alex Fergusson will be among those attending the launch of Britain’s only service dedicated to severe sufferers of the disabling illness, ME, in Troon next week.

The new “25% ME Group” will provide services and advocacy support to severe sufferers of ME throughout Scotland after clinching £143,978 of Big Lottery funding.

As yet, it is the only group to offer such support to severe ME (Myalgic Encephalomyelitis) sufferers throughout the UK.

A recent study by the group found that 61 per cent of their members had reported receiving inadequate care packages to support them in their homes and with their disability needs.

But now, users of the service will be offered a benefits advice and form-filling service, telephone support, and face-to-face representation as and when required.

The funding, which has been allocated for the next three years, has also allowed the group to set up new offices at 21 Church Street, and employ a full-time advocacy worker and a part-time administrator.

Practical advice on many issues including those related to community care, accessing appropriate health and social services and the benefits system will be among the services offered.

Next week, the group will hold the official launch of the project. As well as Alex Fergusson MSP, who is also the chairman of the Scottish Cross Party Group on ME, and John Scott MSP, local councillors and healthcare professionals are expected to attend.

Co-ordinator Simon Lawrence, of Beach Road, Barassie, said the service was vital given the difficulties ME sufferers face. He said “ME sufferers need a simple procedure and assistance in obtaining suitable care for their long-term, disabling illness.”

“I believe the provision of this new service, thanks to the Big Lottery Fund, will greatly alleviate some of the problems that sufferers face on a daily basis.”

Mr Lawrence, who himself suffers from the illness, added “We hope to provide real, practical support for people with this condition. We might not be able to offer a cure, but we certainly plan to alleviate some of the everyday problems experienced by sufferers with the introduction of this type of specialized advocacy service.”

 

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Edinburgh Evening News

22nd June 05

(Extract)

 

“Halt Research, Say ME Campaigners”

 

Campaigners for ME sufferers have called for a multi-million-pound research project into potential treatments for the disease to be scrapped.  The ME Association and the 25% Group, which represents severe sufferers, said the treatments involved in the five-year project were causing more harm than good. And they said the money should be used to fund research into the still unexplained scientific causes of the disease.

In the  Lothians, the research project, started last year, is being run by Edinburgh University. It has been funded by the Chief Scientist’s Office and the Medical Research Council. Established at a clinic at the Astley Ainslie Hospital, it is working with more than 100 volunteers.

They are being given a range of treatments including physiotherapy and CBT, as well as being examined regularly by a doctor. The study is part of a project also involving clinics in England, many of which have been running tests for more than a year.

But far from helping find a cure for the disease, support groups are claiming the treatments have caused sufferers further pain and often irreversible damage. They claimed surveys into the effects of these kind of treatments found they caused at least half of sufferers more pain, while for chronic sufferers more than 80% said they felt worse after treatment

 

Joan Laverie (volunteer) of the ME Association (and ME sufferer for more than 20 years) said that to give sufferers a treatment of physical exercise was “like asking someone with a broken leg to walk.”

There is still very little known about the cause of the disease, and Ms Laverie said that’s where the Government and the health services should be spending research money.

She said: “I was shocked when I heard that this research was to carry on for five years. There is a need for scientific research into the causes of this disease which affects so many people, but instead this money is being wasted on a treatment that is not only ineffective but dangerous.”

 

A spokeswoman for the 25% Group said: “We are calling for these tests to be stopped and for the money to go towards proper biological research. This kind of treatment has been tried for a number of years in various forms and it has not worked.”

 

MRC chief executive Professor Colin Blakemore today defended the trials, saying: “These trials proceed under established guidelines for good clinical trials practice which include monitoring by an independent steering group, which meets throughout the trial. They use the Oxford Criteria which were approved by full peer review and by the independent steering committee.”

 

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