Title |
PACE investigators’ response is misleading regarding patient survey results
|
---|---|
Published in |
Journal of Health Psychology, May 2017
|
DOI | 10.1177/1359105317703787 |
Pubmed ID | |
Authors |
Karen D Kirke |
Abstract |
The PACE investigators' citation of a patient survey might mislead readers into thinking that the experience of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) supports PACE findings. In fact, patient survey evidence directly contradicts the results of the PACE trial. A review of survey data published between 2001 and 2015 reveals that for most patients, graded exercise therapy leads to worsening of symptoms, cognitive behavioural therapy leads to no change in symptoms, and pacing leads to improvement. The experience of people with ME/CFS as reflected in surveys is a rich source of information, made more compelling by the consistency of results. Consequently, patient survey evidence can be used to inform practice, research and guidelines. Misrepresentation of patient experience must be vigorously challenged, to ensure that patients and health professionals make decisions about therapies based on accurate information. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
United Kingdom | 74 | 27% |
United States | 17 | 6% |
Australia | 10 | 4% |
Netherlands | 7 | 3% |
Ireland | 6 | 2% |
Sweden | 4 | 1% |
Norway | 3 | 1% |
France | 3 | 1% |
Canada | 2 | <1% |
Other | 8 | 3% |
Unknown | 145 | 52% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 244 | 87% |
Practitioners (doctors, other healthcare professionals) | 20 | 7% |
Scientists | 9 | 3% |
Science communicators (journalists, bloggers, editors) | 5 | 2% |
Unknown | 1 | <1% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 40 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Postgraduate | 5 | 13% |
Student > Bachelor | 5 | 13% |
Student > Doctoral Student | 4 | 10% |
Researcher | 4 | 10% |
Student > Ph. D. Student | 3 | 8% |
Other | 8 | 20% |
Unknown | 11 | 28% |
Readers by discipline | Count | As % |
---|---|---|
Nursing and Health Professions | 13 | 33% |
Social Sciences | 6 | 15% |
Medicine and Dentistry | 5 | 13% |
Psychology | 2 | 5% |
Immunology and Microbiology | 1 | 3% |
Other | 1 | 3% |
Unknown | 12 | 30% |