When tuberculosis was rife in the last century, its victims were taken from their homes and shut away in sanatoria. When plague raged in the Middle Ages, the stricken households had their doors marked with a cross - for God alone could help them. There is an illness abroad in the UK that is now striking down hundreds of thousands of people. It is not infectious, but some of those afflicted feel just as isolated as any historical unfortunate with TB or plague.
This isolation is not enforced with bolts and bars but is just as shattering - the sufferers are prisoners to some extent of disbelief but to a greater extent of helplessness on the part of the medical profession. Many doctors do not know what to do in the face of a tidal wave of illness that defies conventional diagnosis and treatment. It can take months or even years for the victim to have his or her suffering dignified with a name: maybe chronic fatigue syndrome, which is also known as myalgic encephalomyelitis or ME, maybe fibromyalgia, maybe multiple chemical sensitivity, maybe Gulf war syndrome or maybe something else broadly labelled an immune disorder.
All these afflictions overlap into each other and are on the increase. While support groups point to evidence that they have been with us for ever - as neurasthenia in Victorian times or febricula (the little fever) in the 18th century - the soaring numbers today lead many to suggest that it is life in the modern era that is making people sick.
This is where controversy kicks in - a furious, raging controversy that pits patients and medics against scientists and other medics and has led to vituperative exchanges in print and impassioned denunciations and pleadings across countless websites in the United States and here. At the heart of it is a simple question: are all these people becoming ill because they have been attacked by something such as pesticides, other chemicals in the environment or vaccinations somehow upsetting the balance of the immune system? Or is it some sort of psychological reaction to the stresses, pressures and pace of the way we live today?
Nobody should be surprised by the scorching temperature of the debate. According to support groups, 150,000 people in the UK alone suffer from ME, or chronic fatigue syndrome as doctors have re-christened it. A survey by Action for ME found that 77% of such people were feeling severe physical pain, while 41% were bedridden or had been in the past. These are people who know they are sick. They reject as an insult any suggestion that their physical symptoms could be a manifestation of mental anxiety.
The rejection has to do with the modern stigmatisation of mental illness. In spite of the enthusiasm for meditation and belief in the healing power of mind-body harmony and positive thinking, nobody ever wants to think that the mind can cause physical illness. But above all, it emanates from the distress and hurt of people who are genuinely suffering but feel they are being ignored.
A third of ME/CFS sufferers do not get a diagnosis for 18 months. It leaves them in a limbo, without a name for the enemy - let alone a strategy for fighting back. Charles Shepherd, a retired GP who is medical director of the ME Association, says many are then still stuck in a "black hole, trying to find a consultant who knows anything about it". They may or may not get referred to a psychiatrist. "Most patients get fitted into the pipeline of the doctor's preconceptions," he says.
Faced with doctors - and often also colleagues, friends and relatives - who are sceptical about their illness, people with ME, fibromyalgia (the chief symptom of which is pain all over the body) and similar conditions have sought out each other through support groups and websites, and they have got angry, particularly with what one described as "the powerful psychiatric lobby".
Simon Wessely, of the Department of Psychological Medicine at Guy's, King's and St Thomas's School of Medicine in London, is a former key figure in the study of ME/CFS who has felt the heat and largely backed out of the kitchen. Last week he wrote a powerful commentary in the prestigious Journal of the American Medical Association, pleading for the schism within the "ME community" to be healed in the interests of finding answers for patients.
His piece accompanied a major review of all the treatments for ME/CFS that have been studied by scientists in clinical trials. It found that there was very little good quality evidence to support any of the drugs, alternative therapies or other treatments offered to sufferers, but tentatively suggested that two essentially psychological interventions - cognitive behavioural therapy, which is a form of counselling, and graded exercise therapy - were so far the most effective.
Professor Wessely urged patients, campaigners and doctors to come together, welcome the review and coordinate further efforts to help people with the condition. If they didn't, he warned chillingly, increasing numbers of doctors were likely to disengage from a fraught field. "There are many who have found themselves increasingly vilified and, as a consequence, have joined the ranks of others who have been abused and intimidated for producing research unpopular to powerful special interests," he wrote.
His remarks come at a time when ME activists are waiting in a state of high excitement for the Holy Grail. A report is expected any day now from the chief medical officer, Liam Donaldson, following a working group review of the problems around diagnosis and the ways forward in treatment. Many hope that the medical establishment will at last clasp ME to its bosom.
They may be a tad disappointed. Dr Shepherd said that Professor Wessely's words were "a little bit inflammatory at this particular point in time" because of the high expectations of the report from the working group, of which he was part. "People are hoping it will be a wake-up call for the medical establishment," he says. But, he adds wryly: "They have got to wait to see if they like what we have got to say. There are certain misapprehensions around. I have come in for as much stick and hate mail as Simon on this.
"We had a very specific remit to look at the management of the illness. We're particularly looking at the diagnosis and assessment of the patient, what drug and non-drug treatments may be helpful, what is needed in terms of GP and hospital services. We haven't been given a remit to go out and come to conclusions and decide what is the best name for this illness and what is the cause of it. We're not producing the magic answers to this highly topical and controversial subject. There are some people out there who think we are going to solve all these problems, but we're not."
Dr Shepherd recognises the frustration with doctors, because he admits to having been taught himself at medical school that ME/CFS "was all hysterical nonsense". Then, at the age of 30 he was knocked sideways. "I caught a dose of chickenpox from one of my patients and then went down with all the symptoms that people describe," he says. The Centres for Disease Control in the US list the most common as memory and concentration impairment, sore throat, tender lymph nodes, muscle pain, a new type of headache, unrefreshing sleep, malaise lasting more than 24 hours after exercise, and multi-joint pain. The focus on tiredness and sleep implied in chronic fatigue syndrome is off the ball, he argues.
Chris Clark, chief executive of Action for ME, says there is now some centre ground to occupy. "There is no definitive cause identified yet, but it can be categorically said that it is not all in the mind and that there are certain definable triggers, such as viruses and glandular fever. It is not a psychiatric illness, but as with any chronic condition that lasts for years, people may have depression as a result rather than a cause," he says.
Whatever the CMO's report says, the controversy is not going to evaporate. In February this year, Olivier Mouterde, a French paediatrician, wrote a perplexed letter to the Lancet, wondering what this ME could be that he encountered when he spent some months at a British hospital. "I contacted French, Belgian and Swiss colleagues, none of whom had ever diagnosed any paediatric case of chronic fatigue syndrome or ME. In my home practice, we see children who are tired, but never to the point of disability.
"No clinical, biological, radiological or electrical investigation shows a specific abnormal pattern. No basic treatment leads to a complete cure," he wrote. "The disorder seems to be a disease, and most children have heard about it before developing it. They can catch it because it exists and people can read about it." He wondered if "ME might be an example of a culturally induced or culturally worsened disease".
Two UK paediatricians replied, suggesting that French doctors miss the disease only because it has as yet no French name. "We strongly suspect that Mouterde will find himself making the diagnosis in French children in the not-too-distant future," they wrote. Yet is this the chicken and the egg? Once the diagnosis exists and the people hear about it, will they start to identify it in themselves? We are a very long way from the answers.
• For more information, contact Action for ME (www.afme.org.uk) or the ME Association (www.meassociation.org.uk)
