ME is classified by the World Health Organisation as a disease of the nervous system (1). The recent Chief Medical Officers’ Working Group Report (2002) recognises that CFS/ME “can cause profound and often prolonged illness and disability and can have a very substantial affect to the individual and family” (2).
Previous research conducted in 1999 in Sussex (3) identified the need for a local specialist ME/CFS clinic for the area, and estimated that there are at least 4,500 ME/CFS sufferers in Sussex, 900 people who are severely ill with ME/CFS and over 3,000 people who may be prevented from working due to the illness.
The Sussex ME/CFS Society has updated the research with this survey in 2002 to verify previous information and look at new areas of interest. Questionnaires were distributed to all 551members of the Society, and there were 277 responses (49%). The authors of this research wish to thank all members who took part in the survey.
In summary, the conclusions from this research are:
Diagnosis: There is still often a delay of between 12 to 18 months before a diagnosis of ME/CFS is made, as recently highlighted by Action for ME research.
Severity and Impact: 65% of the Sussex ME/CFS Society’s current members are unable to work due to the severity of their illness.
Treatments: There was no single treatment that could be seen as a ‘cure-all’ for ME/CFS! However, it was felt that the following statements could be made from research results:
Pacing appeared to be the most helpful treatment, as 88% found it helped and no one experienced it as being detrimental.
Alternative/Complementary Therapies: More people in this survey were helped by alternative therapies (59%) than antidepressants (53%) CBT (50%) or GET (37%). Only 4% felt their illness was worsened by an alternative therapy. Many commented positively on their experiences. However, a significant number had tried a range of different therapies at some financial cost to themselves.
Antidepressants also helped a majority (53%) of those who used them. But a significant number (42%) said antidepressants did not help them or made them worse. Many wrote about side effects and had tried a range of different drugs.
Cognitive Behaviour Therapy: 50% of those who tried CBT said it helped.
Graded Exercise Therapy: While some (37%) were helped by this therapy, more said it had not helped or had made them worse (48%). 12% of participants were not offered any of the four conventional treatments considered, despite some of these people categorising themselves as chronically and severely ill.
Patient Satisfaction: There was a relatively low satisfaction level regarding medical care, with only 6% very satisfied and 60% not satisfied. Satisfaction was qualified by comments on the positive attitude of the GP or Consultant involved and the quality of care provided.
Dissatisfaction was qualified by comments on the time taken to diagnose, the lack of knowledge about the illness, inadequate treatment and poor attitudes amongst the medical profession towards people with ME/CFS.
Below are some of the comments by Sussex ME/CFS Society Members made in their questionnaire responses and which appear within this report.
“My GP acted promptly and sensitively and made a quick referral”
“I am quite satisfied but (I have been) basically left to cope as there seems to be no treatment available”
“I found (the treatment) extremely helpful and although I am not recovered I use the practical strategies everyday to organise my time and activity”
“I feel that too many people like myself do not receive early intervention so by the time they do see someone the illness is chronic and much harder to tackle. By then people have usually compounded difficulties, and financial, social, and emotional losses.”
“I do feel that everyone’s needs are different with this illness and the NHS tends to think that all people will react in the same way to treatment.”
“Up to 1999 my many requests for help were ignored – it was “all in my mind”, just stress, or I was told there was no such thing as ME.”
“I cannot praise the treatment I have received or the results highly enough. I am now 90% recovered and have absolute faith in ….. as a treatment for ME.”
The Sussex ME/CFS Society believes that this report further indicates the need for a local specialist service for ME/CFS in Sussex, and that action is needed by all agencies to ensure that this need is met in the near future.
(1) World Health Organisation Report 1992
(2) Chief Medical Officers’ Working Group Report on ME/CFS – A Guide 2002 page 5
(3) ME/CFS sufferers in Sussex: Their needs and experiences of local care provision. Edwards et al. 1999
Contact us for the full report.