ME, also known as chronic fatigue syndrome (CFS), officially came in out of the cold yesterday with a government-endorsed report recognising it as a chronic and treatable condition.
Controversy has raged around ME/CFS - once tagged yuppie flu - for decades. Patients have complained that they were told to pull themselves together and that their symptoms were all in the mind. Those doctors who were sympathetic had little idea what to do.
"This has been a disease in the wilderness," said the government's chief medical officer, Sir Liam Donaldson, yesterday on the publication of the report commissioned by his predecessor, Sir Kenneth Calman, three years ago.
"Sufferers have often been ignored, not always taken seriously, labelled sometimes as hypochondriacs and urged to get better on their own. From today all that changes. This is a real condition, affecting real people. We need to move forward. There are still things unknown about it, but we have a real basis for action."
But even Prof Donaldson, who says he has experienced more lobbying, dossiers and letters on this subject than almost any other, admitted that the controversy was unlikely to dissipate quickly. Patients and professionals remain split over the fundamental question of what to call the disease. No cause has been identified, although it is agreed that one or more viruses may trigger it.
The most serious divisions are over treatment. Four clinicians and two representatives of patient groups on the working party declined to endorse the final report.
The doctors, mainly from the mental health field, "felt very strongly that the psycho-social side of the problem should have had more emphasis in the report," said Prof Donaldson.
The patient group representatives were concerned about the report's backing for graded exercise therapy - a gradual stepping-up of what the patient tries to do. Many tell of being coerced into forms of activity they could not cope with and suffering a relapse.
But after three years of sometimes difficult discussions, a route map has been produced. Recognition, especially by health and social care professionals, that ME is a chronic disorder is key.
The report says that most people with ME can probably be cared for by their GP, but that the doctors need to know what treatments may help.
There has been very little research, says the report, but what evidence exists suggests that graded exercise therapy and cognitive behaviour therapy are most successful. The report also says that "pacing" which patients prefer - helping them find a level of activity which does not overstretch them - may be useful.
The psychiatric services still have a role to play. "The patients I meet are bodies and minds together," said the immunologist Anthony Pinching, who was deputy chairman of the working group. "All of us in all specialties will see them. Some will raise questions about whether there is a mental health issue.
"I think the mental health professionals are probably more than any other group used to dealing with patients in complex disease areas where there are no obvious physical markers."
Allen Hutchinson, who chaired the group, said it was "important not to see this report as targeted on general practice. It is a supporting document also for mental health practitioners".
Many children, particularly in the 13-15 age group, are developing ME/CFS symptoms. The report recommends that their care should be led by a paediatrician or child or adolescent psychiatrist because some of the symptoms could equally be signs of mental health problems.
Mental health professionals can also help them to understand and cope with their disease. Children must receive help quickly, the report says, or their education will suffer.
More research into the causes and treatment of ME/CFS is needed, says the report, but while the government has asked the medical research council to develop a research strategy it did not announce any new money to pay for it.
"We are disappointed that the government has made no funding announcement," said Chris Clark, chief executive of Action for ME. "This disease is costing hundreds of millions of pounds and investment is needed to stop the waste. But otherwise we're very happy. This is the first breakthrough."
Charles Shepherd of the ME Association, a retired GP, was also generally pleased with the amount of consensus: "I'm very disappointed that the psychiatrists decided to withdraw. There are parts I feel unhappy with and parts I agree with but at the end of the day, there is a lot of common ground."
