MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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After four months, Miss C’s health had deteriorated to the point where she could no longer continue to keep
up with the programme.
Her condition continued to decline. At this point she was very weak, her symptoms were severe and she
had to spend three months in bed. This was reported to the FINE Trial team. Miss C reports that they were
not interested in her deterioration.
She was told that she had finished the trial and that she was considered a success and to be cured due to her
initial improvement.
This was distressing for Miss C as this was clearly not the case. It was the opposite of what she was
reporting to the FINE team. She felt that she was not being listened to. At the end of the trial there was no
follow‐up care and all the counselling and support that was available during the trial was withdrawn. Miss
C describes this withdrawal as profoundly disturbing. She could not understand the silence and the lack of
interest in her worsened condition. As a professional herself, she considers this to be unethical. She has
been too ill to consider making a complaint about her treatment.
Since undertaking the graded exercise, Miss C now rates her condition to be 2 out of 10 and she continues to
decline. She now has added disabilities that were exacerbated by the graded exercise regime.
She hopes that others have not been bullied in the same manner.
In summary, it cannot be emphasised enough that these case histories are believed to be but the tip of the
iceberg; certainly it seems that there may have been research malpractice and outright scientific misconduct,
and the bullying experienced by Miss C accords with the undue coercion experienced by the PACE Trial
participant referred to in Section 3 above who expressed her dismay at the involvement of Action for ME
with the trial.