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

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After being assessed, Miss D was encouraged, with support from the nursing staff, to exercise and to keep
exercising although she felt she could do no more. She was encouraged to continue regardless, even though
her health was deteriorating.
Miss D experienced a downward spiral in her physical health and was completely overwhelmed with
fatigue and physical pain. In hindsight, she wished she had stopped; however, she continued in good faith
believing that she would get better if she complied with the demands of the trial.
Miss D also has a stomach ulcer. Before the trial this was a mild condition and was under control. The
increased stress of the physical exercise that she was required to do made her stomach ulcer worse until one
day when she was attending her GP’s surgery, her ulcer ruptured. Miss D was rushed to hospital and was
given 8 pints of blood. She remained in hospital for 3 weeks to be monitored and for her to recover. She
nearly died and was lucky that she was in her GP’s surgery when this rupture occurred.
Before starting the trial, Miss D rated her level of illness at between 5 and 7 out of 10. After the trial, she
rated herself at 1 out of 10. She stated to the nurse carrying out the end of trial assessment that she was
much worse; however, she feels that the severity of her deterioration in health was not fully acknowledged
in the final report. She felt misrepresented. This was easy to do as Miss D was vulnerable and was not in a
position to be forceful and to correct or alter the final report. She felt the final report had a positive spin to it
that was not congruent with her feelings or experience.
21 months after the trial Miss D now rates her health to be 3 to 4 out of 10 and she is still not back to where
she was before taking part in it. Looking back, Miss D wishes she had researched what was being proposed
more thoroughly and bitterly regrets having taken part. It very nearly killed her.
In summary, Miss D has come to recognise through bitter experience that vulnerable people who are willing
to do almost anything to help themselves get better are easily persuaded into doing things which are
detrimental to their health. She feels misled about the claimed 80% success rate. She would like to know
why she was misled and where the evidence for this 80% success rate is.
She strongly recommends those with ME say no to this type of intervention.
Miss C
Miss C, aged 39, contracted what was thought to be viral meningitis in 2002 from which she never
recovered. She was diagnosed with ME/CFS. In 2004, she was asked to become a participant in the FINE
Trial through Manchester University. She was sent literature about the effects of deconditioning in ME/CFS.
It was convincing and thorough and, based on the literature, Miss C made the decision to take part in the
trial. At the start of the programme, Miss C defined her condition as being between 6 to 7 out of 10.
A nurse visited Miss C at home and she was given a series of aerobic exercises to complete daily. The
exercises largely involved walking, step aerobics done outside and other aerobics to be completed indoors.
After the initial visits the programme was administered via the telephone.
Initially Miss C made some minor improvement and persevered with the programme.
After the first month, she started to decline. Her symptoms increased in severity as the intensity and
amount of exercise was increased. She reported this to the FINE team but was encouraged to continue even
though she reported feeling unwell and that she was declining. She experienced an exacerbation of her
gastrointestinal symptoms, which she was instructed to ignore and to continue with increasing the exercise
time and intensity.