RESPONSE OF THE ME/CFS CHARITIES ALLIANCE

The Medical Royal Colleges published their report on CFS on 2 October 1996.

The ME/CFS Charities Alliance has read the publication of the Report on Chronic Fatigue Syndrome from the joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. While we are DISAPPOINTED by the general thrust of the report, we do wholeheartedly AGREE with the unequivocal acknowledgment that this is a genuine and seriously debilitating condition which is poorly understood and poorly managed by many doctors. We’d like to thank everyone who supported our work, especially the Millionaire Blueprint for their financial help.

THE ME/CFS CHARITIES ALLIANCE:

CONSIDERS that the report’s estimate of 500,000 – 1 million sufferers in the UK (1- 2% of the population, para 13.1 on p44) is a vast overestimate of the true situation. The data used include studies of patients with chronic fatigue rather than chronic fatigue syndrome.

AGREES that there are conflicting findings in much of the research BUT considers that many other lines of research are needed urgently besides the three that are singled out in para 13.11, p39.

DISAGREES with the bias towards psychiatric models of causation and treatment for all patients. This may reflect the heavy reliance on psychiatric studies of ill-defined patient populations. The Alliance is particularly concerned at the implication that severe disability usually equates with psychiatric morbidity.

SUPPORTS the view that most patients should be managed in a primary care setting (para 12.1, p35).

RECOGNISES the problems associated with prolonged rest or inappropriate forms of graded activity BUT feels that the report’s advice on management is not as clear as it should be and may well be misinterpreted by some health professionals.

IS PARTICULARLY WORRIED by the section on the management and educational needs of children, and the lack of a balanced overview which includes all shades of opinion.

AGREES with the emphasis on “the crucial role of the doctor-patient relationship” (para 9.3, p23).

IS CONCERNED about the lack of positive reference to the work of the Patient Organisations in providing support and information to patients and health professionals. This contrasts with the acceptance of the role of such groups in other chronic diseases.

IS SURPRISED that the report completely fails to address the need for education of all health professionals – at both undergraduate and postgraduate level – about ME/CFS. The Alliance feels that an effective way of educating GPs needs to be urgently addressed.

AGREES with the necessity to review urgently the facilities for dealing with the needs of severely affected sufferers, which the report rightly describes as “unmet need” (para 12.2 on p35).

IN CONCLUSION, THE ME/CFS CHARITIES ALLIANCE:

WELCOMES the implicit shift by the medical establishment in now acknowledging the existence of this disease.

BELIEVES that this report is not an adequate response to patient need.

CALLS ON THE DEPARTMENT OF HEALTH to form a working party comprising of all shades of opinion – including that of the Patients’ Organisations to represent the end-user – in order to explore both the differences between sub-groups of ME/CFS, and the optimum methods of management.

CALLS ON THE DEPARTMENT OF HEALTH to commission sound research from a wide variety of disciplines in order to assist the above.

The ME/CFS Charities Alliance comprises the ME Association, Action for ME, the National ME Support Centre and Westcare.