MED: (Part f) Tom Kindlon's submission on the CDC's draft 5-year plan for CFS
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 is not 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%).
As I have pointed out, Peter White has strong views on Graded Exercise
Therapy (GET). He has also got strong views against Pacing and at the last
moment resigned from the CMO group on CFS/ME (2002) (mentioned above) as it
had placed Pacing on the same level as GET and CBT. People involved in the
committee were annoyed at this as people had made a lot of concessions to
try to get a document people like him would sign.
This is relevant when one is talking about an �international consensus on
management.� Basically by selecting Peter White for such a committee, it is
very likely that the document will recommend GET with few caveats or
warnings; alternatively Peter White will resign. His views would not be
representative of a lot of the opinions in the UK or internationally, so it
would not really be an international consensus if he was on the sole UK
representative.
As I mentioned before, I believe you need people on any panel who are not in
denial about the adverse reactions from GET (like Peter White appears to
be). Here are my suggestions again: 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). Without individuals who are willing
to challenge Peter White on such a panel, I believe one is likely to get a
document which hypes the benefits of GET and CBT based on GET and does not
give much if any information on potential risks. To me, this would seem
like a very irresponsible thing for an agency like the CDC to do.