MRC CFS/ME RESEARCH STRATEGY DRAFT PROPOSAL WAMES RESPONSE
WAMES (Welsh Association of ME & CFS Support) welcomes the MRC's draft CFS/ME Research Strategy document as a useful first step towards shaping future research.
We are particularly pleased that the Research Advisory Group accepts the seriousness of the condition and acknowledges the increasing evidence that a number of sub groups exist under the CFS banner.
We support the call for improved methodology in research:
- the need for standardisation and clearer definitions which will allow comparison of subgroups
- larger samples & wider range of participants,
- independent replication and the importance of follow-up
- better opportunities to disseminate the results within the UK.
We hope that future research will be easier to compare and understand, but we do not see how this can happen unless the issue of terminology is addressed alongside that of diagnosis and definition. The term CFS has more than one usage although the WHO classifies it under disorders of the nervous system (ICD10 - G93.3, WHO:1992) with syndromes of chronic fatigue being classified as "Mental and Behavioural" disorders (ICD10 - F48.0 WHO:1992), a category from which ME is excluded.
We also welcome the acknowledgement of the important role patients and support charities should play in shaping and participating in research and wish to see the role of the “expert patient” fully accepted.
We welcome the acknowledgement that the severely ill, children, ethnic minorities and recovered patients should no longer be excluded from research. We understand why there are difficulties and ethical issues surrounding the inclusion of young people and the severely ill but we nevertheless feel that they need to be included. It is recognised that the prognosis for children is better than for adults and that their experiences may be different to adults with the same illness. Adults who developed ME as children should also be included in any and all proposed research, as their experiences of this illness can only be of value. Research also needs to be (sensitively) done involving long term severely affected children. The results of adult research may not always be applicable to young people.
Pathophysiology - This is the most disappointing area of the MRC’s strategy as they appear unwilling to recommend new areas of research and are very selective about which research to follow up. We do not understand their rejection of the extensive research which has already pointed towards immunological and neurological dysfunction in ME, much of which has been “peer reviewed”.
While we agree that "studies investigating causal pathways and mechanisms would not have immediate impact on increasing understanding of CFS/ME", any hope for an effective cure for ME is dependant on finding the cause/s of the illness and this must be given a higher priority.
Interventions - We accept the importance of studying interventions to help patients use the most appropriate management skills and find symptomatic relief. The value of CBT in providing some patients with an understanding of illness is not in doubt, although it cannot be seen as a treatment for ME. GET has proved helpful to some chronic fatigue sufferers but harmful to many ME sufferers. We wish to see research that might help a large number of ME patients as classified in ICD10 - G93.3. We need to know how efficacious the drug and complementary therapies are, which many patients are already using. As Pacing is the preferred method of management of many people with CFS/ME and there is evidence that counselling is as helpful as CBT, these would also seem to be proper areas of research
Summary - We wish to see:
- immediate attention given to the question of terminology, the identification of subgroups and improving research methodology.
- a strong emphasis put on long term research into the physical problems and the potential causal pathways and mechanisms of the illness (pathophysiology).
- the exploration of potential management interventions to help alleviate the suffering of patients, but we feel that there is sufficient evidence here in Wales to support the view that CBT and GET are not suitable areas to warrant further expenditure of limited resources.
- studies to also include young people and the severely affected.
(30th January 2003)