Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
- Source: Journal of Neurology, Neurosurgery & Psychiatry, Nov 17, 2012
By Charlotte Smith, Simon Wessely
[Note: This criticism of the Scottish Good Practice Statement (SGPS) regarding clinical management of CFS, can be read in full text here. Psychiatrists Wessely and Smith, proponents of GET and CBT as "proven treatments" for CFS, claim the SGPS is not evidence-based, so encourages poor practice and may “confuse both patients and clinicians” with “unsustainable conclusions.” Among the reasons they give for their criticism: The SGPS reflects the “dangerous” Canadian Consensus Criteria for diagnosis. Also the SGPS suggests that graded exercise therapy’s benefit is “controversial” & suggests weight must be given to patients’ experiences; and it suggests that cognitive behavioral therapy should be used as it is “in other chronic physical medical conditions” as a tool for coping better with symptoms, especially "when their symptoms have led to a psychological response that has compounded their symptoms.”]
Guideline development by its nature is a process and method of integration and synthesis of information, be it originating from research, evidence-based medicine, clinical findings, patient experience and/or individual narratives of an illness or disease.
In the majority of cases, it can be assumed that this information and these ideas are travelling in the same direction; however, it is possible that the objective and subjective cannot be synthesized, and appear mutually contradictory.
In this commentary, an example of where this might be the case has been analyzed: a report published by the Scottish Public Health Network, a Health Care Needs Assessment of Services for people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).
It appears from reflection and analysis of this document that this process may indeed have gone awry.
We propose that, if followed:
• This document would lead to the adoption of dangerous diagnostic criteria for ME/CFS,
• As well as preventing patients from making informed decisions about treatment options,
• And discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.
This commentary seeks to highlight some of the problems, contradictions and unintended consequences of a divergence between patient perspectives and evidence-based medicine despite probably sharing the same aim, that of improving patient care and striving for better understanding and better treatments for disease.
Source: Journal of Neurology, Neurosurgery & Psychiatry, Nov 17, 2012-11-19. Smith C, Wessely S. Department of Psychological Medicine, Institute ofPsychiatry, Weston Education Centre, London, UK. [Email: firstname.lastname@example.org]