IT is now six years since the UK's chief medical officer's report gave recognition to the illness ME/Chronic Fatigue Syndrome as severe and disabling, but said that people with ME and their carers met a lack of understanding from healthcare professio
nals, and many patients had difficulty in obtaining a diagnosis.
Today, as the main self-help group for ME in Lothian, we hear the same feelings expressed of abandonment and isolation.
While ME seems to be better known and patients may have a sympathetic doctor, the most vulnerable, the 25 per cent of sufferers who are severely ill, have no dedicated services.
This hidden group are housebound and unable to look after themselves, often too ill to attend hospitals or doctors.
In Lothian there are some 3200 people, including children, living with ME, most becoming ill between the ages of 25 and 40, some of the most productive years of our lives.
Children miss out on school work and social interaction. In Lothian, temporary provision for an outreach worker for school-age children with ME was put in place two years ago but funding ended in February and future funding is now in doubt.
Charity Action for ME suggests that 77 per cent of the 240,000 people nationwide with ME have lost their jobs due to the illness.
This illness robs people of their ability to work and can destroy close relationships. Many face the prospect of spending their lives on benefits when they are desperate to return to a normal life.
It is over 50 years since the first description of ME appeared in medical literature, but despite this, there has been little progress in biological research into the causes.
With lack of understanding and services, the loss of jobs and social contacts, many people with ME struggle with loneliness and depression.
Patients have been told by NHS Lothian that services for ME would be brought into existing services for people with chronic ill-health.
Yet we still have distressed people contacting our self-help group because after diagnosis there is little or no support.
In Lothian, patients with ME may be selected to take part in a national research trial into the management of ME/Chronic Fatigue Syndrome.
A small number of people may be offered a place on a course on managing ME at the Thistle Foundation at Craigmillar.
These are only available for patients who can travel themselves to the centres.
There is a crying need for dedicated services within Lothian for patients with this serious illness.
We need properly funded research to help medical professionals and also decision-makers where people have to apply for benefits, and to help patients back to better health and into work again.
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Ana Semple is from the Edinburgh ME Self-Help Group