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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.

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.

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 I questioned things.

 

  =

  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.

                    

 

It is well known within parts of the ME community that public funding for biomedical

research into Myalgic Encephalomyelitis is non-existent. Despite many applications for such funding to the Medical Research Council (MRC) over recent years all have been rejected.  Therefore, it is of interest that the body responsible for allocating funds to research into ME  the MRC see fit to allocate funding to these trials.  The MRC state that funding is not

 ring fenced for ME and that, if these trials did not go ahead, then the funding would not

necessarily go elsewhere.

We received an email from Alice Burchfield relating to her experiences from participation in the FINE trials. The email is quite illustrative of the contents and effects/results of the FINE trials.  The amount spent on biomedical research into a biological illness (ME) is, at the current time, £ 0.00.

FINE Trials Experience

  e-mail    From Alice Burchfield