MED: (Part 2 of 4) Results from 10 ME/CFS surveys from the past and a request for further information
Tom Kindlon
Survey 2: (UK) ME Association (2009)
The UK's ME Association recently organised possibly the largest ever survey
of people with ME/CFS. In its Spring 2009 magazine, it included data on 25
therapies. Yet again, Graded Exercise Therapy (GET) had the highest rates
of adverse reactions with a whopping 56.5% of people reporting being made
worse by the intervention:
Graded Exercise Therapy
906 replies:
Made much worse: 33.1%
Slightly worse: 23.4%
No change: 21.4%
Improved: 18.7%
Greatly improved: 3.4%
The related treatment modality of physiotherapy (i.e. therapy provided by a
physical therapist) also had a high rate of adverse reactions (32.8% in
total):
Physiotherapy
862 replies:
Made much worse: 15.7%
Slightly worse: 17.1%
No change: 36.7%
Improved: 27.0%
Greatly improved: 3.5%
Cognitive Behaviour Therapy (CBT) had a lower but still significant rate of
adverse reactions 19.5% or 194 out of 997 cases:
Cognitive Behaviour Therapy (CBT)
Made much worse: 7.9%
Slightly worse: 11.6%
No change: 54.6%
Improved: 27.0%
Greatly improved: 3.4%
CBT also came very low (21st of 25) on the table of treatments based on the
percentage of people helped by them. The only treatments below them were
Imunovir (which had only being tried by 62 patients, the lowest number of
the 25 treatments) (25.8% reporting it helped them), NADH and Graded
Exercise Therapy.
The treatment with the highest percentage of people saying it helped was
pacing of activities:
Pacing
2137 replies
Made much worse: 1.2%
Slightly worse: 3.5%
No change: 24.1%
Improved: 59.6%
Greatly improved: 11.6%
Pacing also had one of the lowest rates of people saying they were made
worse by the treatment.
=============================
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."
=============
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 Activity 18% 8% 30% 44%
Pacing 77% 8.5% 3.5% 11%
----------------------------------------------------
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)
----------------------------------
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)
The odd proponent of GET has 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.
======================
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.
=================
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. Patients were asked who provided the GET
treatment. Of the 567 who answered this question, 181 (31.92%) 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; these are very similar percentages to the
subgroup of 335 patients who 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 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 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
four 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.