U.K. Report: "A Major Step Forward"
By Tony Britton

Early this year, a government advisory panel in the United Kingdom ruled that chronic fatigue and immune dysfunction syndrome (CFIDS) is a genuine condition that must be recognized by doctors. The report was welcomed by many in the CFIDS community, although it stirred controversy over treatment recommendations that some felt leaned too heavily toward graded exercise therapy.

This update on the ruling is written by Tony Britton, public relations and communications manager for The ME Association in the United Kingdom (U.K.). In Britain, CFIDS is known as myalgic encephalopathy or myalgic encephalomyelitis (ME).

The publication of independent Report of the ME/CFS Working Group was a major step forward in persuading the public and medical professionals in the U.K. that the condition is a genuine and disabling illness that is not well managed and urgently requires more research.

There was excellent coverage of the patient experience along with a clear message that doctors and patients have to work together in partnership when it comes to the management of ME. The report highlighted the diverse range of problems faced by the severely affected, and gave detailed information for doctors on the clinical assessment of patients.

The ME Association was delighted to read of the unambiguous and genuine support for the report from the Chief Medical Officer for England, Professor Sir Liam Donaldson. His headline quote on the day of publication was: “Until now, on the whole, this has been a disease in the wilderness. Sufferers have been ignored, not always taken seriously, sometimes labeled hypochondriacs, urged to pull themselves together and get better on their own. From today, that changes.”

Despite major differences of opinion at times, the production of the report demonstrated that doctors and patients can work together to achieve a high degree of consensus.

What will change?

• Public perception of ME in the U.K. should become much more positive. There are exciting developments at parliamentary and government levels in both England and Scotland, and the Scottish chief medical officer has thrown his weight behind the report.
  
• The report will have some positive effects on medical opinion, but not as many as many people with ME expect — especially in general practice. Very few doctors will actually read the report unless they are already interested in ME. Their information on its content will come from the British Medical Journal (BMJ) and other professional journals, which by and large have ignored the positive aspects of the independent report.
  
• There will be more research activity, possibly as a result of funding by the U.K.-wide Medical Research Council, which has been asked to compile a research strategy for ME.

It has to be demonstrated that there will be any significant improvement in hospital-based services. There also is a danger that services will be dominated by an approach involving cognitive behavioral therapy and graded exercise.

The positive aspects far outweighed the negative. But, as yet, there is no designated money for research, education or service provision. The failure to promote the very critical paper on benefits, presented as an addendum, was disappointing.

The ME Association is working with other patient groups in the U.K. to ensure that the report’s recommendations are not forgotten.

The publication, A Report of the CFS/ME Working Group, is available at www.doh.gov.uk/cmo/cfsmereport/index.htm. The ME Association booklet, “ME/CFS/PVFS: An exploration of the key clinical issues,” which covers our views on cause, diagnosis and treatment options is available online at www.meassociation.org.uk.