MED: (Part 4 of 4) Results from 10 ME/CFS surveys from the past and a request for further information
Tom Kindlon
[Patients' experience with treatment of chronic fatigue syndrome.]
Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6
[Article in Norwegian]
*Bj�rkum T*
*Wang CE*,
*Waterloo K*.
torunn....@helse-forde.no Sogndal BUP Postboks 184 6851 Sogndal.
http://www.ncbi.nlm.nih.gov/pubmed/19521443
BACKGROUND: Chronic fatigue syndrome is a highly debated condition. Little
is known about causes and treatment. Patients" experience is important in
this context.
MATERIAL AND METHODS: 828 persons with chronic fatigue syndrome
(ICD-10 code: G93.3) were included in the study. They were recruited through
two Norwegian patient organizations (ME-association and MENiN). The
participants filled in a questionnaire on their experience with various
approaches to alleviate their condition.
RESULTS: Pacing was evaluated as useful by 96% of the participants, rest by
97%, and 96% of the participants considered complete shielding and quietness
to be useful. 57% of the participants who had received help to identify and
challenge negative thought patterns regarded this useful. 79% of the
participants with experience from graded training regarded this to worsen
their health status.
Overall, the results were similar, irrelevant of the severity of the
condition.
INTERPRETATION:Most participants in this study evaluated pacing, rest and
complete shielding and quietness to be useful. The experience of the
participants indicate that cognitive behaviour therapy can be useful for
some patients, but that graded training may cause deterioration of the
condition in many patients. The results must, however, be interpreted with
care, as the participants are not a representative sample, and we do not
know the specific content of the approaches.
Survey 10: (US) The CFIDS Association of America 1999 Reader Survey:
The largest survey of ME/CFS patients that I am aware of in the US was
published by the the CFIDS Association of America in 1999 (questionnaires
were also distributed that year).
I can send a copy of the page of results of 28 therapies on request.
Unfortunately, I do not have time to type in all the results at present.
820 readers filled in the questionnaire.
The results for Graded Exercise Therapy were:
462 respondents
Helped a lot: 111 (24.0%)
Helped a little: 170 (36.8%)
No effect: 51 (11.0%)
Harmful: 130 (28.1%).
Numerically this was the highest rate of adverse reactions. Numerically the
second highest rate of adverse reactions was reported for antidepressants:
Antidepressants
539 respondents
Helped a lot: 163 (30.2%)
Helped a little: 154 (28.6%)
No effect: 104 (19.3%)
Harmful: 118 (21.9%).
In terms of percentages, Graded Exercise Therapy had the third highest rate
of adverse reactions. Two treatments, Beta-blockers and colonics, which I
think the CDC is unlikely to recommend, were marginally higher:
Beta-blockers
172 respondents
Helped a lot: 33 (19.1%)
Helped a little: 39 (22.7%)
No effect: 45 (26.2%)
Harmful: 55 (32.0%).
Colonics
131 respondents
Helped a lot: 14 (10.7%)
Helped a little: 38 (29.0%)
No effect: 42 (32.1%)
Harmful: 37 (28.2%).
CBT had a lower rate of adverse reactions compared to the rates seen in
other surveys. This may be because CBT in the US currently simply based on
GET � there are different forms offered some which might encourage the
pacing of activities. However this might change if information from the
form of CBT that tends to be used in the UK and the Netherlands is
highlighted by the CDC.
CBT
160 respondents
Helped a lot: 48 (30.0%)
Helped a little: 60 (37.5%)
No effect: 38 (23.8%)
Harmful: 16 (10.0%).
The treatment with the best results was Pacing of activities. It had the
lowest rate of adverse reactions (1/601 or 0.2%) and the highest helpful
percentage (i.e. the sum of the percentages for helped a little and helped a
lot)
Pacing
601 respondents
Helped a lot: 423 (70.4%)
Helped a little: 167 (27.8%)
No effect: 20 (3.3%)
Harmful: 1 (0.2%).
==================
Meredith Boyd
Thank you
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