Time to wake up to fact that ME is not just a state of mind

IT came as no surprise that a leaked health service report revealed that ME is a condition that has been neglected for years and the treatment of it is in radical need of a shake-up.

The wide-ranging study of more than 160 sufferers showed they felt they were neglected and not listened to by the NHS, there were no strategies in place for them, and there was a lack of advice concerning support groups.

A "disbelieving culture" was also cited as a problem in a disease that is believed to affect up to 250,000 people in the UK – around 4000 of whom are thought to live in the Lothians.

However, a list of recommendations in the report – together with an expected paper from the Scottish Government later this year – has led to optimism among charities supporting Myalgic Encephalomyelitis (ME).

Authors of the report, Anne-Marie Comber, a patient involvement worker for the Edinburgh Community Health Partnership, and senior health promotion specialist Liz Simpson, highlighted ten areas for improvement in the way the disease, which is sometimes called Chronic Fatigue Syndrome, is dealt with.

They said ME should be "taken seriously from the earliest stage and patients should be listened to" because an early diagnosis can help with future problems when the disease takes hold.

Health professionals need to be more honest with patients, they said.

They also need to abandon "negative attitudes" and produce leaflets highlighting what support and help was available.

The report said: "The responses to this survey have described a cluster of conditions that have a major impact on people's lives. Some are forced to take drastic steps to change their lives in order to cope. Examples of good practice mainly centred around sympathetic staff attitudes, helping patients feel they were being listened to.

"Many of the respondents reflected a negative response from services and the public towards having these conditions, which focus mainly on a disbelieving culture – the conditions treated as not real and individuals seen as hypochondriacs.

"The conditions were treated as if they were mostly psychosocial or 'in the mind' rather than having physical symptoms."

There are still many gaps in the understanding of ME at a clinical level. It is a physical illness, and many sufferers are fobbed off with being told they are in fact undergoing mental or emotional problems.

It remains difficult to trace, and can have various effects on people.

In some it can mean, with appropriate treatment and care, the sufferer can lead an entirely normal life. At the other end of the scale, it can render some people virtually helpless, in some cases with them unable even to feed themselves.

One factor of the care offered by the NHS was that there was no difference in the way sufferers were treated, regardless of age or severity of the condition.

The report even found that a lack of structure in the way care was offered led to desperate sufferers seeking their own remedies and making things worse.

It continued: "Suggestions for service improvements given by the respondents seemed neither costly nor unrealistic. Listening to and accepting what patients say would also make a huge difference."

The report will be published once NHS Lothian has an ME lead in place to oversee its implementation. It is understood to be the most comprehensive survey of ME in the Lothians area, and when it was put out ME charities were impressed with the level of response.

Among those strongly-worded replies included tales of doctors refusing to diagnose the illness and people having to resign because their bosses wouldn't believe they had ME.

One respondent said: "He (the doctor] put the fatigue down to viral infection, then stress, then anxiety/depression, and treated it as depression with medical support. He was reluctant to give me the diagnosis ME, he was keen to give the diagnosis a mental emphasis."

Ana Semple, 63, a committee member of the Edinburgh ME self-help group, has had ME for 20 years. She said: "Since I was diagnosed, public attitudes have improved. Everyone has heard of it and most people know someone who has it. In some quarters it has led to people saying you are shying away from life, but in reality, ME sufferers who try and show they aren't can do themselves more harm than good.

"But in that time the services have never been there. Hopefully if everything in this report is implemented it will lead to a drastic improvement."

Jackie Sansbury, director of strategic planning and modernisation, NHS Lothian, said: "NHS Lothian has now completed a piece of work, which was one of the first of its kind, to identify the needs of patients with ME.

"The report will form the basis of further discussions between health care professionals and local patient groups on how we take services forward in the future. At this point it would be premature to say how the future of ME services will change."