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Contribute to the work being done to offer a HIGH QUALITY sampling frame for scientific research of all types, including epidemiology, at the population level, through intervention studies (of treatments) to studies of sub-cellular pathology.
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Develop a DIAGNOSTIC PROFORMA and Notes for GPs, to aid them in deciding if a patient really does have ME/CFS or some other Chronic Fatigue condition.
We are supporting the development of a Disease Register of people, who have unequivocal and medically-confirmed ME/CFS and are willing to consider taking part in research studies. We recognise that some previous work has included patients who may have Chronic Fatigue, but not Chronic Fatigue Syndrome and has sometimes excluded ME/CFS patients with more severe manifestations. The Disease Register will help to overcome that problem.
A pilot project to establish the Disease Register, funded by the Big Lottery Fund and sponsored by Action for ME (AfME), has already been completed as part of the National ME/CFS Observatory. We are in the process of adding those people with severe ME who participated in the CHROME project and who have given their consent. Beyond that we hope in due course to make contact, including via local ME Support Groups, with more potential volunteers.
But we are looking to go further than just making available to bona fide researchers contact details of people on the Register who have given informed consent to possible participation in the particular research proposed.
1) The Disease Register will verify that every sufferer meets the stringent criteria for ME/CFS.
2) We are also supporting the work of the Register in exploring ways of extending the usefulness of our Register for research, by enabling participants to submit blood samples which can be stored and then made available to Researchers as required for particular research projects.
3) A further step planned, to aid researchers utilising the Disease Register, is the establishment of a post mortem tissue archive, in respect of which Disease Register participants will be invited to make advance declarations of willingness to contribute samples of brainstem and other tissues. When this work is complete, researchers will have the ability to construct a cohort of true ME/CFS sufferers (and have available their clinical histories, blood samples and eventually tissue samples) for testing their hypotheses.
Sadly far too many GPs and indeed consultants are not really aware that Chronic Fatigue is only one of the symptoms of Chronic Fatigue Syndrome, and are either reluctant or feel unable to diagnose ME/CFS. In other cases, the reverse happens. GPs have been known to be too ready to give a patient a referral to a specialist unit for ME/CFS only for the specialist to discover that the GP’s diagnosis was inaccurate, thereby wasting everybody’s time.
We are developing a set of proforma questions and guidance to help the GP through his/her assessment. These will be based on stringent diagnostic criteria (mentioned above) and should form part of the notes forwarded to the Specialist at referral.