Journal of IiME Volume 1 Issue 1 FINE Trials - Set Up & Objectives ‘..complementary trials into The UK FINE Trials – A view from a Participant Reasons: These trials are funded by the Medical Research Council (MRC) alongside another set of trials called PACE trials. Both are described by the MRC[1] as various treatments options for CFS/ME which aim to improve quality of life for those who are ill.' ‘FINE (Fatigue Intervention by Nurses Evaluation) will test two different treatments that are particularly suited to those who are too ill to attend a specialist clinic.' 'The FINE trial will involve patients in the North West of England and North Wales.' The recruitment of patients for both trials was started in 2004 and, according to the MRC, were expected to take up to five years to complete. The FINE trials are headed by Dr. A. Wearden from Manchester University whose rehabilitative therapy. FINE treatments would be delivered in patients’ own homes (‘so the trial Inclusion Criteria The MRC claims that the trials will use the most inclusive criteria for CFS/ME to determine eligibility to take part (the Oxford criteria) in order for the results to be generalised to the largest number of people possible. FINE TRIAL COSTS The FINE trials cost £1,147,000. background is 1 Data they collected about me was misleading. Only questionnaires were used in the 2 sessions I had with the researchers and the questions were leading and did not reflect my true feelings. Also the researchers spent 2-3 hours with me each time which was so exhausting that I think I didn't really know what my replies were. is particularly suited to those who are too ill to attend specialist clinics.’ – according to the MRC) 2 The trial totally disregards ME/CFS as an illness. It is based on a theory that our symptoms are due to deconditioning and maladapted beliefs about exercise. I was initially suspicious of this but agreed to it because it provided me with a lifeline (was great for me to believe I could get better through exercise) and also because in the initial session the nurse gave me a presentation which lasted over three hours. I was so exhausted. The disregard of the illness was reflected on a practical level. For example, they said that if I recover from exercise in ten minutes then I am working at the right level. I abided by this rule and later crashed due to delayed and accumulated effects (which are widely accepted features of this illness). How this is ethical I do not know! 3 The program was hypocritical. They had strict rules for me to live by regarding pacing (yet gave me very little practical advice on this). Yet they felt it was okay to do 3 hour long sessions with me! It felt unworkable. 4 I crashed after the last session with them, so although my report was not glowing, it is highly misrepresentative of the actual outcome (probably my most important point)!! I am now worse than I have been in the duration of this condition. FINE Trials - EXPERIENCE by Alice I have been phoning the trial office but no answer yet! I want to withdraw (from the FINE trials) for a whole load of reasons. I will try to explain some of them here but may not make much sense due to brain-fogginess so please excuse that. Invest in ME Charity Nr 1114035 5 The therapist who provided the intervention had very selective hearing and she would adapt whatever I said to fit into what she wanted to hear (I have examples of these but won't bore you). 6 The therapist was critical of me and unsupportive. She was defensive when questioned things. I (continued on page 26) www.investinme.org 25
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