MED: (Part 3 of 4) Results from 10 ME/CFS surveys from the past and a request for further information
Tom Kindlon
The 6 above surveys are from the UK. I have information on some surveys
undertaken by local groups in the UK which would also report high rates of
adverse reactions both from CBT and especially GET.
However reports of adverse reactions are not restricted to the UK.
Gijs Bleijenberg PhD is a Dutch psychologist which the CDC has worked with.
I fear he will not have shared with the CDC or others results of surveys of
patients which show a somewhat different picture to the studies he has
published.
==================
Survey 7:
Koolhaas et al (2008/2009)
*Majority of ME/CFS patients negatively affected by Cognitive Behaviour
Therapy***
(From:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0803A&L=CO-CURE&P=R647&I=-3 )
To the best knowledge, this was presented at the 2009 IACFS/ME conference by
Dr Van Hoof.
The following summary is from page 4 of the Dutch-language study.
http://home.planet.nl/~koolh222/cgtbijmecvsvanuitperspectiefpatient2008.pdf
Cognitieve gedragstherapie bij het chronische vermoeidheidssyndroom (ME/CVS)
vanuit het perspectief van de pati�nt
Drs. M.P. Koolhaas, H. de Boorder, prof. dr. E. van Hoof
Date: February 2008
ISBN: 978-90-812658-1-2
The Netherlands
*SUMMARY*
*Background
*In recent years, Chronic Fatigue Syndrome, also known as Myalgic
Encephalomyelitis
(ME/CFS), has been getting a lot of attention in scientific literature.
However its aetiology
remains unclear and it has yet to be clarified why some people are more
prone to this
condition than others. Furthermore, there is as yet no consensus about the
treatment of
ME/CFS. The different treatments can be subdivided into two groups, the
pharmacological
and the psychosocial therapies. Most of the scientific articles on treatment
emphasize the
psychosocial approach.
The most intensively studied psychological therapeutic intervention for
ME/CFS is cognitive
behaviour therapy (CBT). In recent years several publications on this
subject have been
published. These studies report that this intervention can lead to
significant improvements in
30% to 70% of patients, though rarely include details of adverse effects.
This pilot study was
undertaken to find out whether patients' experiences with this therapy
confirm the stated
percentages. Furthermore, we examined whether this therapy does influence
the
employment rates, and could possibly increase the number of patients
receiving educational
training, engaged in sports, maintaining social contacts and doing household
tasks.
*Method
*By means of a questionnaire posted at various newsgroups on the internet,
the reported
subjective experiences of 100 respondents who underwent this therapy were
collected.
These experiences were subsequently analysed.
*Results
*Only 2% of respondents reported that they considered themselves to be
completely cured upon finishing the therapy. Thirty per cent reported 'an
improvement' as a result of the therapy and the same percentage reported no
change. Thirty-eight percent said the therapy had affected them adversely,
the majority of them even reporting substantial deterioration. Participating
in CBT proved to have little impact on the number of hours people were
capable of maintaining social contacts or doing household tasks. A striking
outcome is that the number of those respondents who were in paid employment
or who were studying while taking part in CBT was adversely affected. The
negative outcome in paid
employment was statistically significant. CBT did, however, lead to an
increase in the
number of patients taking up sports.
A subgroup analysis showed that those patients who were involved in legal
proceedings in order to obtain disability benefit while participating in CBT
did not score worse than those who were not. Cases where a stated objective
of the therapy was a complete cure, did not have a better outcome. Moreover,
the length of the therapy did not affect the results.
*Conclusions
*This pilot study, based on subjective experiences of ME/CFS sufferers, does
not confirm the high success rates regularly claimed by research into the
effectiveness of CBT for ME/CFS. Over all, CBT for ME/CFS does not improve
patients' well-being: more patients report deterioration of their condition
rather than improvement. Our conclusion is that the claims in scientific
publications about the effectiveness of this therapy based on trials in
strictly controlled settings within universities, has been overstated and
are therefore misleading. The findings of a subgroup analysis also
contradict reported findings from research in strictly regulated settings.
==============
Survey 8: Survey of 3 Dutch ME/CFS patient organizations (December 2008):
3 Dutch ME/CFS patient organisations published in December 2008 at:
http://www.nivel.nl/pdf/Rapport-draagvlakmeting-CVS-ME-2008.pdf the results
of a large survey they undertook. Following the link, one can see the
questionnaire that was used.
Table 2.1 numbers of sent questionnaires and responses returned to the
patients' associations
Number sent: 740
Total number of responses: 449
% response rate (gross): 60.7%
Number of filled in questionnaires: 412
% Net response rate: 55.7%
~~~~~~~~~~
(Rough) Translation into English of the results tables from a large survey
of the membership of three Dutch ME/CFS patient organisations (part 2 of 2)
Table 4.10 Treatment or accompaniment/support/management concerning the
diagnosis ME/CFS and the impact experienced of that treatment or
accompaniment/support
Treatment or accompaniment/support/management
Column 1: % that has had (the) treatment
Column 2: Number of those that have answered
Column 3: Impact: After (i.e. because of) the treatment, improved
Column 4: No impact
Column 5: Impact: After (i.e. because of) the treatment, disimproved
- Diet 65,2% n=251 50,2% 43,8% 6,0%
- Homoeopathy 64,6% n=247 30,8% 62,8% 6,5%
- Physiotherapy 52,4% n=203 36,9% 41,9% 21,2%
- Vitamin B12 48,2% n=184 32,1% 63,0% 4,9%
- Psychotherapy (not CBT), Psychological support 46,1% n=169 33,1%
60,9% 5,9%
- Management based on trying to have a balance of rest and activity 44,2%
n=172 57,0% 33,7% 9,3%
- Antidepressants 43,0% n=165 32,7% 36,4% 30,9%
- Carnitine 40,9% n=156 37,2% 53,8% 9,0%
- Melatonin 38,0% n=146 32,9% 50,7% 16,4%
- Graded Activity/Exercise Therapy 37,3% n=142 43,0% 23,9% 33,1%
- Painkillers 37,0% n=138 47,1% 47,8% 5,1%
- Cognitive Behavioural Therapy (CBT) 29,9% n=115 30,4% 42,6% 27,0%
- oefentherapie (I think this is a cross between physiotherapy and the
Alexander Technique) 27,0% n=102 20,6% 42,2% 37,3%
- Herbal Medicine 26,7% n=97 28,9% 61,9% 9,3%
- Bed-rest 11,7% n=45 48,9% 44,4% 6,7%
- Participation at a rehabilitation centre 10,2% n=40 45,0% 35,0% 20,0%
- Immunological therapy 7,7% n=25 44,0% 40,0% 16,0%
- Neurofeedback 3,8% n=14 35,7% 57,1% 7,1%
~~~~~~~~~~
Tabel 4.10 Behandeling of begeleiding in verband met de diagnose ME/CVS en
het ervaren effect van die behandeling of begeleiding
Behandeling of begeleiding % dat
Column 1: % dat behandeling heeft gehad
Column 2: aantal dat vraag naar effect heeft beantwoord
Column 3: Effect: Het ging daarna beter
Column 4: Geen effect
Column 5: Effect: Het ging daarna slechter
- dieet 65,2% n=251 50,2% 43,8% 6,0%
- homeopathie 64,6% n=247 30,8% 62,8% 6,5%
- fysiotherapie 52,4% n=203 36,9% 41,9% 21,2%
- vitamine B12 48,2% n=184 32,1% 63,0% 4,9%
- psychotherapie (niet CGT), psychologische begeleiding 46,1% n=169 33,1%
60,9% 5,9%
- begeleid zoeken naar een balans van activiteiten en rust 44,2% n=172 57,0%
33,7% 9,3%
- antidepressiva 43,0% n=165 32,7% 36,4% 30,9%
- carnitine 40,9% n=156 37,2% 53,8% 9,0%
- melatonine 38,0% n=146 32,9% 50,7% 16,4%
- begeleide opbouw van activiteiten 37,3% n=142 43,0% 23,9% 33,1%
- pijnstillers 37,0% n=138 47,1% 47,8% 5,1%
- cognitieve gedragstherapie (CGT) 29,9% n=115 30,4% 42,6% 27,0%
- oefentherapie 27,0% n=102 20,6% 42,2% 37,3%
- kruidentherapie 26,7% n=97 28,9% 61,9% 9,3%
- bedrust met begeleiding 11,7% n=45 48,9% 44,4% 6,7%
- opname in revalidatiecentrum 10,2% n=40 45,0% 35,0% 20,0%
- immunologische therapie 7,7% n=25 44,0% 40,0% 16,0%
- neurofeedback 3,8% n=14 35,7% 57,1% 7,1%