MED: (Part c - 2) Tom Kindlon's submission on the CDC's draft 5-year plan for CFS
Tom Kindlon
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Survey 5: (UK) Action for ME (2003)
Action for ME in 2003 wanted to follow up on its previous survey to see
whether changes were occurring with regards to members' experiences of
treatments. It restricted responses to treatments received over the
previous three years so that the results would not overlap with a previous
survey. 550 patients were sent a questionnaire, "your experiences", with
354 people responding (a response rate of 64%).
List of results for people who did GET broken down by the practitioner:
Under a Physio:
Negative 12 (67%) Neutral 0 (0%) Positive 6 (33%)
Under an OT:
Negative 6 (100%) Neutral 0 (0%) Positive 0 (0%)
Under a Doctor:
Negative 3 (27%) Neutral 1 (9%) Positive 7 (64%)
Under a Behavioural Therapist:
Negative 1 (25%) Neutral 1 (25%) Positive 2 (50%)
Gym:
Negative 3 (100%) Neutral 0 (0%) Positive 0 (0%)
No Professional:
Negative 1 (8.33%) Neutral 4 (33%) Positive 7 (58%)
With regard to this group the authors of the report say:
"Had NO professional input (had they therefore paced themselves ?) -
mostly with positive outcomes"
If one combines
Under a physio + Under an OT + Under a doctor + Under a behavioural
therapist, to get a figure for under a professional:
Negative 22 (56.41%) Neutral 2 (5.13%) Positive 15 (38.46%)
So those who did GET under a professional had much higher rates of adverse
reactions.
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Survey 6: (UK) Action for ME/Association for Youth with ME (2008):
This is another large survey, with 2763 patients with ME or CFS in the UK
responding to a questionnaire which asked about people's experiences of
treatments over the last three years (to avoid overlap with other surveys
Action for ME had undertaken).
It found that of 699 who said they'd tried Graded Exercise Therapy, 34% said
they'd been made worse by it compared to 45% who said they'd been helped and
21% who said it made no difference.
The contention that people would not have being made worse by a treatment if
they had done the treatment under specialist supervision, is not backed up
by the data from this study.
In this study patients were asked who provided the GET treatment. 567
answered this question (i.e. 132 did not). 181 (31.92%) of these said it had
made them worse compared to 276 (48.68%) who said it helped and 110 (19.40%)
who said it made no difference.
335 of these 567 patients said they had done the management strategy under
an "NHS specialist". 111 (31.27%) of this group said they'd been made worse
compared to 162 (45.63%) who said they'd been helped and 82 (23.10%) who
said it made no difference.
So you can see that a similar percentage of people were made worse by GET
who had done it under an NHS Specialist as those who had not, so doing it
under an NHS specialist did not reduce the rate of adverse reactions.
So a large proportion of patients in the UK have experienced adverse
reactions for trying Cognitive Behaviour Therapy (CBT) and in particularly
Graded Exercise Therapy (GET). However it is my experience from reading
Peter White's writings and hearing him talk that he does not inform people
of this information.
Given the seriousness of the issue, I feel it would irresponsible if the CDC
allows Peter White to be the only representative from the UK.
Suggestions for others on the ground who are not in denial of the issue of
adverse reactions from GET (like Peter White appears to be) include: Charles
Shepherd MD charles.c...@btinternet.com ; Ellen Goudsmit PhD
CPsychol AFBPsS (a Chartered Health Psychologist) elleng...@HOTMAIL.COM
; Abhijit Chaudhuri DM MD PhD FACP FRCP (a consultant neurologist)
chaud...@gmail.com ; Neil Abbot MSc PhD (Operations Director, ME Research
UK) Neil....@pkavs.org.uk and William Weir MD (an infectious disease
consultant who ran an NHS clinic for ME for a number of years - I don't have
an E-mail address at the time of writing but he can be contacted through his
practice at: +44-207-467-8478 (i.e. from the US: 00-44-207-467-8478). All
of these five professionals have published in the area and been in the area
for over 10 years - I think Dr William Weir is in the area for approximately
20 years and Drs Shepherd and Goudsmit for over 20 years. Drs Chaudhuri and
Goudsmit did their PhDs in the area.
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