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
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
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
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
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
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
- 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
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
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
patient groups in the U.K. to ensure that the report’s recommendations are not
The publication, A Report of the CFS/ME
Working Group, is available at
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