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.
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
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
5. The therapist who provided the intervention had very selective hearing
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
7. I believe the consent process was unethical. I was not aware what I was
letting myself in for. (they did not explain the details of the intervention
until after I had consented). In addition, the deconditioning theory was
presented as fact and there was no mention of a balanced viewpoint (I have since
read research that goes against this deconditioning theory).
8. Another example of my data not being represented properly: I suspended from
University a couple of weeks before the start of the program and had started to
improve from the rest. I continued to improve for a little while into the
program. I made sure I highlighted that the cause of this improvement could be
the effects of the program, or the rest I was getting. They were not interested
in this - the fact that there was basically another aspect of my life that could
be causing changes in my condition.
I was unhappy during the study but wanted to continue because I thought
(stupidly) that in some small way I was helping the fight against ME. It is in
realising that my data will probably be used in some way to support this program
- that I feel made me so much worse - that makes me want to withdraw.
Blimey, I have written all this and still don't feel like I've painted the
The doctor put me forward for this trial because this was all he knew
of to do. I so wish I had done my research first. I will be so much more
cautious in the future.
It frightens me to think that this research will be used to support clinics
offering this in the future.
Anyway, I hope that is of help to someone. I can provide more information if
anyone is interested.
Thanks for your replies and I hope this is a good day for you.