Firestormm
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I first attached this to the CPG Scotland thread: http://forums.phoenixrising.me/index.php?threads/cross-party-group-on-me.19788/page-17#post-308488 as it features the Scottish Health Care Needs Assessment.
However, having skimmed the text, it appears worth discussion on it's own thread as the thinking behind the review (ha ha) could and has been applied to other Guidelines e.g. CCC.
Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.abstract
Charlotte Smith, Simon Wessely
Abstract
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 synthesised, and appear mutually contradictory.
In this commentary, an example of where this might be the case has been analysed: 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.
Full Review: http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf html available free for download, view on line - just register.
The following are those considered in the review::
Mackie P, Dougall R, Conacher A. Health Care Needs Assessment of Services for
people living with ME-CFS, Scottish Public Health Network. 2010. http://www.
scotphn.net/pdf/Final_report_web_version_271110.pdf (accessed 11 Mar 2012).
Mackie P, Dougall R, Conacher A. Health care needs assessment of services for
people living with ME-CFS- short version for patients, Scottish Public Health
Network. 2011. http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_
09_Final.pdf (accessed 11 Mar 2012).
Carruthers BM, Jain AK, Meirleir KL, et al. Myalgic encephalomyelitis/Chronic
Fatigue Syndrome; Clinical Working Case definition, Diagnostic and Treatment
Protocols. J Chron Fatigue Syndr 2003;11:1–115.
However, having skimmed the text, it appears worth discussion on it's own thread as the thinking behind the review (ha ha) could and has been applied to other Guidelines e.g. CCC.
Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.abstract
Charlotte Smith, Simon Wessely
Abstract
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 synthesised, and appear mutually contradictory.
In this commentary, an example of where this might be the case has been analysed: 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.
Full Review: http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf html available free for download, view on line - just register.
The following are those considered in the review::
Mackie P, Dougall R, Conacher A. Health Care Needs Assessment of Services for
people living with ME-CFS, Scottish Public Health Network. 2010. http://www.
scotphn.net/pdf/Final_report_web_version_271110.pdf (accessed 11 Mar 2012).
Mackie P, Dougall R, Conacher A. Health care needs assessment of services for
people living with ME-CFS- short version for patients, Scottish Public Health
Network. 2011. http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_
09_Final.pdf (accessed 11 Mar 2012).
Carruthers BM, Jain AK, Meirleir KL, et al. Myalgic encephalomyelitis/Chronic
Fatigue Syndrome; Clinical Working Case definition, Diagnostic and Treatment
Protocols. J Chron Fatigue Syndr 2003;11:1–115.