- There were marked discrepancies between patient and professional sources’ views on treatment recommendations.
- Patient organisations preferentially recommended medicines, pacing and complementary treatments
- Medical organisations recommended rehabilitation therapies
Objectives: Chronic fatigue syndrome (CFS) is a controversial illness, with apparent disagreements between medical authorities and patient support organisations regarding safe and effective treatments. The aim of this study was to measure the extent of different views regarding treatments, comparing patient support organisations and medical authorities in the UK.
Methods: Two independent raters analysed two groups of resources: UK patient support websites and both medical websites and textbooks. A 5-point Likert scale was developed with the question ‘With what strength does the source recommend these treatments?’ The various treatments were divided into the following four groups: complementary and alternative medicine (CAM), pharmacological, rehabilitative, and pacing therapies.
Results: There were significant differences between the scores for patient support organisations and medical sources for all 4 treatment groups.
The results for supporting CAM were 74% (patient group) vs 16% (medical source) (p < 0.001), 71% vs 42% for pharmacological (p = 0.01), 28% vs 94% for rehabilitative (p < 0.001) and 91% vs 50% for pacing treatments (p = 0.001).
Conclusions: There were substantially different treatment recommendations between patient support organisations and medical sources. Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews.
A UK based review of recommendations regarding the management of chronic fatigue syndrome, by Miriam Mallet, Eleanor King, Peter D. White in Journal of Psychosomatic research, Sep 2016 Vol 88, pp 33–35 [Published online July 2016]
see Tom Kindlon’s reply: ME/CFS Patient Organisations should be free to not promote CBT and GET for ME/CFS and the models underlying them 24 JULY 2016