MED: (Part e) Tom Kindlon's submission on the CDC's draft 5-year plan for CFS
Tom Kindlon
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%
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(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%
To summarise the data here for GET/GAT, CBT and Physiotherapy in a way that
is easier to read
The results for Graded Activity/Exercise Therapy were:
142 respondents
Improved: 61 (43.0%)
No impact: 34 (23.9%)
Disimproved/Made worse: 47 (33.1%)
Physiotherapy
203 respondents
Improved: 75 (36.9%)
No impact: 85 (41.9%)
Disimproved/Made worse: 43 (21.2%)
Cognitive Behavioural Therapy (CBT)
115 respondents
Improved: 35 (30.4%)
No impact: 49 (42.6%)
Disimproved/Made worse: 31 (27.0%)
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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%