MED: (Part c1) Tom Kindlon's submission on the CDC's draft 5-year plan for CFS
Tom Kindlon
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Survey 3: (UK) 25% ME Group (2004)
In the UK, there is an ME charity specifically for severely affected
patients with ME, called the 25% ME Group.
It conducted a survey of its members which got a response rate of 66% or 437
replies.
This is a direct quote from their report where they quote the statistics
i.e. out of 170 patients who had tried Graded Exercise Therapy (GET), 139
had been made worse by it!
"By far the most unhelpful form of treatment was considered to be Graded
Exercise Therapy (GET). This is a finding that may surprise some readers,
given the current medical popularity of this approach. However, these
patients' perceptions are supported by data from previous experience: of
the 39% of our members who had actually used Graded Exercise Therapy, a
shocking 82% reported that their condition was made worse by this treatment.
On the basis of our members' experiences we question whether GET is an
appropriate approach for patients with ME. It is worth noting that some
patients were not severely affected before trying GET. Thus, it is not only
people with severe ME who may be adversely affected by this form of
treatment."
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Survey 4: "Scotland M.E./CFS Scoping Exercise Report" (October 2007)
With Section 16b Funding through The Scottish Government, Action for ME
produced a report: "Scotland M.E./CFS Scoping Exercise Report" (October
2007)
"In total 564 people with M.E. were sent a questionnaire (510 sent hard
copies, 54 electronic versions). 399 completed questionnaires were received
which represents a 71% return." (Page 8)
Table (Page 9)
Treatment Helpful no effect made me worse
didn't try
CBT 15.5% 17.5% 7%
60%
GET 5% 6% 32%
57%
Graded Activity18% 8% 30%
44%
Pacing 77% 8.5% 3.5% 11%
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Translating these percentages into percentages solely based on people who
had actually tried a treatment (more interesting figures, I think most
people would agree), would give the following figures (the actual figures
may have been a tiny bit different because of rounding):
---
CBT
---
Numbers Tried: 160
Helpful: 38.75% (=15.5/40) (62)
No effect: 43.75% (=17.5/40) (70)
Made me worse: 17.5% (=7/40) (28)
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GET (i.e. Graded Exercise Therapy)
----------------------------------
Numbers Tried: 172
Helpful: 11.63% (=5/43) (20)
No effect: 13.95% (=6/43) (24)
Made me worse: 74.42% (=32/43) (128)
---------------
Graded Activity
---------------
Numbers Tried: 224
Helpful: 32.14% (=18/56) (72)
No effect: 14.29% (=8/56) (32)
Made me worse: 53.57% (=30/56) (120)
------
Pacing
------
Numbers Tried: 298
Helpful: 86.52% (=77/89) (258)
No effect: 9.55% (=8.5/89) (28)
Made me worse: 3.93% (=3.5/89) (12)
A few proponents of GET have tried to say that figures from surveys are
somehow not significant because we don't know whether the people did Graded
Exercise Therapy under a professional or not. Firstly surveys 5 and 6
(below) show that the evidence isn't there to show that doing these
treatments under a specialist is safer. Also the fact remains that GET is
like an "over-the-counter" drug. People will try it if information is put
out that it is an effective treatment either under a professional or by
themselves. Which means promoting it as a treatment for ME/CFS risks
damaging people's health.