- Messages
- 48
New open-access peer-reviewed commentary by me, Karen D Kirke, on patient surveys published online in Journal of Health Psychology today, ME Awareness Day:
http://journals.sagepub.com/doi/full/10.1177/1359105317703787 (=online version)
http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 (=pdf)
Title: “PACE investigators’ response is misleading regarding patient survey results” by 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 behaviour 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. (Kirke, 2017)
If you’re brain-fogged, skip to the figure 1 on p.3, and the discussion starting p.7.
A bit of background on me, as this is the first paper I have written on ME:
I am a health professional and have severe ME (housebound).
I am a Speech and Language Therapist. I worked in a hospital assessing, diagnosing and treating swallowing and communication disorders in adults with a wide range of conditions, including (but not limited to) Parkinson’s disease, multiple sclerosis, motor neuron disease, dementia, stroke, traumatic brain injury, cancer, chronic obstructive pulmonary disease, schizoaffective disorder. Prior to training as a Speech and Language Therapist, I was a linguist. I have had ME/CFS since 2008.
http://journals.sagepub.com/doi/full/10.1177/1359105317703787 (=online version)
http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 (=pdf)
Title: “PACE investigators’ response is misleading regarding patient survey results” by 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 behaviour 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. (Kirke, 2017)
If you’re brain-fogged, skip to the figure 1 on p.3, and the discussion starting p.7.
A bit of background on me, as this is the first paper I have written on ME:
I am a health professional and have severe ME (housebound).
I am a Speech and Language Therapist. I worked in a hospital assessing, diagnosing and treating swallowing and communication disorders in adults with a wide range of conditions, including (but not limited to) Parkinson’s disease, multiple sclerosis, motor neuron disease, dementia, stroke, traumatic brain injury, cancer, chronic obstructive pulmonary disease, schizoaffective disorder. Prior to training as a Speech and Language Therapist, I was a linguist. I have had ME/CFS since 2008.
Last edited: