It’s official: the ME generation

Huge myths about the illness now known as chronic fatigue syndrome/ME have been exploded by a new report on treatments published on 11 January by the UK government’s Department of Health.

Despite the World Health Organization’s listing of this condition as a neurological illness, many doctors and others have for years believed that it was ‘all in the mind’. Such doctors have held sway over the provision of benefits and wheelchairs, and home tuition and distance learning for children. Such help has been routinely refused, leading exhausted patients and parents into legal struggles and appeals to tribunals.

The government’s groundbreaking statement clearly contradicts this view. ‘The Department of Health endorses the view of the CFS/ME Working Group report that there should be no doubt this is a chronic illness and that health and social care professionals should recognise it as such,’ it says.

Benefits, wheelchairs and other equipment are, for the first time, recognised as aiding people with CFS/ME towards independence and enabling them to lead more socially normal lives.

Many mainstream doctors were involved in this report. Decades ago, clinicians knew that this was a disease of physical origin and that their patients were genuinely disabled. Then, two psychiatrists suggested that the 1955 ME epidemic among nurses at the Royal Free Hospital was mass hysteria. One of them had also labelled an epidemic of winter vomiting disease (due to the Norwalk virus) as mass hysteria, a blunder that was forgotten in the rush to include CFS/ME under a psychiatric label.

Since that time, patients have been caught in the middle of a war between factions of the medical profession which still rages with the resignation of several psychiatrists from the Chief Medical Officer’s Working Group in protest at the swinging of the pendulum back to the centre and away from their more extremist view of things.

The myth that psychiatrists can cure CFS/ME is exploded by the report’s admission that, as yet, no one has a cure. ‘Although there is no cure for CFS/ ME, the condition has been found to improve in most patients both with and without treatment; it is good practice to encourage patients to become experts in self-management and to choose between treatment options.’

This is a huge step for patients’ independence. They can now quote this report when choosing whatever treatment they wish – or none.

The government is now developing the concept of the ‘expert patient’, patients who have become experts in self-management. This encompasses the right to decide what is and what isn’t right for them, including alternative therapies.

The report also confirms that, contrary to what many believed, children do suffer from CFS/ME, citing the Dowsett/Colby study involving 333,000 schoolchildren (J CFS, 1997; 3: 29-42). The study found that the illness was causing over half of all long-term sickness absences, more than any other condition. The report acknowledges that CFS/ME is a relatively common condition in both adults and children.

Early recognition with an authoritative, positive diagnosis is cited as key to improving outcomes. This is perhaps the biggest victory of all for patients. It overturns the psychiatric view that, if you give patients a CFS/ME diagnosis, they will develop ‘illness beliefs’ about their condition that will stop them from getting better. In what other disease does the doctor refuse to diagnose the patient?

Some doctors themselves have developed ‘treatment beliefs’ about CFS/ME, believing that graded exercise therapy and cognitive behavioural therapy are, in fact, cures. These therapies involve setting targets for patients to achieve. Many patients feel this is inappropriate. Aiming at targets means failure for many, and an increase in symptoms.

The new report gives ‘pacing’ equal weight. Pacing – promoting healing by living within one’s limits and not provoking symptoms – is the safest management option, according to patient groups, 60 per cent of whose members report becoming worse or receiving no benefit from other treatments. The report admits that all interventional approaches may cause harm in some patients and states that, where adverse effects occur, these could be due to either the therapist’s approach or the fact that the therapy itself is not appropriate.

It is made clear that the trials of graded exercise and cognitive behavioural therapies only covered those patients who were fit enough to attend clinics regularly and were able to cope. The oft-quoted research by K.Y. Fulcher and P.D. White (BMJ, 1997; 314: 1647-52), which claimed success for graded exercise therapy, excluded any patients with known psychiatric illness or sleep disturbances, despite the fact that sleep disturbance is a key symptom of CFS/ME.

This new report is a victory for common sense and the real world and, above all, for the individual patient. It offers clear warnings that evidence of child abuse must be obtained before invoking child protection procedures.

This dictum at last absolves those families who have found themselves the subject of investigation, when their only ‘crime’ was that their child was too ill to go to school and that they didn’t believe that the illness was all in the head.

Jane Colby

Jane Colby is a member of the Chief Medical Officer’s Working Group and Chief Adviser to the Tymes Trust (tel: 01245 401 080), a charity dedicated to the young ME sufferer. Also, see http://www.youngactiononline.com for more information on CFS/ME.