Capital clinic gives hope to ME sufferers

The outpatient service is expected to open this spring at the Astley Ainslie Hospital and will be the first of its kind in Scotland.

It will create the only dedicated research service for sufferers of ME and chronic fatigue syndrome (CFS) in the Lothians.

Currently, ME sufferers are often referred to the infectious disease unit at the Western General Hospital because there is no other service for them.

ME, or myalgic encephalo-myelitis, affects around 15,000 people in Scotland and is characterised by extreme disabling fatigue made worse by physical or mental exertion.

Now Lothians sufferers will be referred to Dr Michael Sharpe and his colleagues and asked if they are willing to take part in the research project.

Dr Sharpe, a consultant in psychological medicine, said:

"What this research now means is that there will be half a million pounds coming to research services in Edinburgh over five years. ME is something that has been ignored by the health service and there is now greater awareness of it.

"There’s a pent-up pressure now because there is a feeling that it has been ignored. The illness is now being recognised by official bodies such as the Department of Health."

NHS Lothian has earmarked 25,000 to complement the work of the research project and to provide care for patients not suitable for the trials.

Once derided as "yuppie flu", over the last few years ME has become recognised as a genuine illness and for the first time large-scale research is being carried out into treatment.

The project, run by Edinburgh University, will divide between 100 and 150 ME and CFS sufferers into four groups to sample different types of treatment and monitor them over five years.

The first group will be given the current treatment - consultations with a hospital doctor.

Other patients will be given physiotherapy, occupational therapy or cognitive behaviour therapy (CBT), as well as seeing a doctor.

Dr Sharpe said: "There are a number of questions that the trial aims to answer, but the main one is which of these treatments works best?"

The Edinburgh trials are part of a 4 million UK-wide research project into treatment for ME and CFS, funded by the Chief Scientist’s Office and the Medical Research Council.

A spokeswoman for charity Action for ME said it had been difficult to get ME and CFS recognised as illnesses.

She said: "There is still a lot of work to be done and there are still a lot of people who don’t know what ME is. There’s still a lot of misinformation around.

"We are really interested in seeing what the results of the research project are going to be."

Phil Mackie, senior specialist in public health at NHS Lothian, said: "Lothian NHS can confirm that there is a major research trial being undertaken by the University of Edinburgh for people with CFS and ME.

"NHS Lothian has invested 25,000 to complement the services to be put in place for the research trial. There is a group meeting this month, which will make the final decision about this investment to allow services to be brought on line from the spring."

Living with the disease

ROSEANNE KITCHENER believes the first signs of her ME began to show when she was just four years old.

As a child she suffered seizures and says she got progressively more ill as she grew up, developing chronic pain and fatigue.

In her worst moments, she doesn’t have enough energy to dry her hair and is frequently confined to her bed.

She found out she was suffering from ME 11 years ago and since then has been campaigning for better treatment for sufferers. Her condition has also led to difficulty walking, swellings, rashes, fevers, chills and infections.

She says she has struggled to have her condition dealt with as no clinic specifically for ME sufferers existed.

Mrs Kitchener, 42, of Muirhouse Bank, welcomed today’s news of a treatment centre. She said: "This is a step forward and it’s wonderful that it’s happening. There has been nothing for people up to now. Research needs to be done so that they can provide solutions for future generations with this condition."