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Case Definitions CFS/ME: A Systemic Review

medfeb

Senior Member
Messages
491
Thanks for posting. THere are a number of great comments here, including one by Twisk.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Just so people are aware, there's another thread about the main paper here:
http://forums.phoenixrising.me/index.php?threads/what-a-new-cfs-definition-review-looks-like.28098/

Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.
Brurberg KG, Fønhus MS, Larun L, Flottorp S, Malterud K.
7 February 2014
BMJ Open 7;4:e003973.
http://bmjopen.bmj.com/content/4/2/e003973.abstract


The e-letter responses to the paper have been published on BMJ Open, here:
http://bmjopen.bmj.com/content/4/2/e003973.abstract/reply
or:
http://bmjopen.bmj.com/content/4/2/e003973.abstract#responses

e-letters by:
  • Jennifer M. Spotila
  • Robert Courtney
  • Angela Kennedy
  • R Simpson (Invest in ME)
  • Tom P Kindlon
  • Ellen M Goudsmit
  • Nasim Marie Jafry
  • Frank N.M. Twisk
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
These comments are uniformly interesting. I encourage anyone to read all of them.

I wonder how many doctors think we should be passive observers in all this, obediently doing whatever they think we should do? The days of the ill-informed patient are dying, and I think that has a lot of the medical profession on edge as the dynamics of the doctor-patient relationship today no longer conform to the traditional model. This is a good thing for the medical profession, and for medicine, though I think many in medicine will find it difficult.

I was hoping to compile a list of fallacies that pervade psychobabble some time this year, but I am at least a year behind in my investigation ... and its not getting easier.
 

A.B.

Senior Member
Messages
3,780
3. This leads to the point that, despite the attempts by the authors to postulate a 'third way' by doing away with the dichotomy of 'organic versus psychic', such a position is logically, logistically and conceptually untenable. There has always been a special pleading when it comes to illnesses deemed psychogenic in nature, and, despite the lofty claims to have transcended mind-body dualism as implied in the authors' comments (and elsewhere), those promoting psychogenic explanations for physical illnesses are invested in privileging the metaphysical power of 'minds' over bodies, believing people can recover from physical impairment by the power of 'correct thinking', ironically practising the Cartesian dualism they claim to have transcended.

4. Psychogenic explanations themselves are subject to a large amount of fallacies in medical reasoning, and this makes them scientifically unsound, and dangerous for patients. My own findings on this issue are discussed in my book, based on 10 years of academic research. To blame patients for daring to rationally object to a problematic construct that psychogenic explanations represent, to the point that even medics and other researchers also contest them, and accuse patients, of all people, of damaging research and practice into this area, is not only unfair: it is untenable.

Very nice comment.

CBT proponents preach the mind-body duality they claim to have overcome, they hold strong unproven beliefs while accusing patients of holding incorrect beliefs about reality, and they perpetuate stigmatization of certain conditions while claiming to be working towards overcoming stigmatization. They sure are a very confused bunch.
 
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Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Another response by Robert Courtney:

Inconsistencies, contradictions and controversies within the field of CFS/ME
http://bmjopen.bmj.com/content/4/2/e003973.abstract/reply#bmjopen_el_7783

A very good letter I felt. Of course definitions and symptoms are only part of the issue - it is the flagging up of possible alternate diagnoses and the required exclusionary tests that can also help definite a more homogeneous group of likely ME patients. In part we are filtering patients, a more likely cause could be discovered at any point in the process or post-diagnosis and that may not be a poor reflection of the criteria. Some illnesses are just hard to spot until they develop and/or a patient (and doctor) say something or take note of something that might send an investigation in a new direction and lead to a discovery of cause. Until such time as we can determine what ME is and is not, and can then determine some form of test or tests: we can only really chip away at the heterogeneity and try to ensure that those we do exclude are not excluded by mistake: because that could prove a disaster for a patient.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Systematic Overreaching
March 6th, 2014 Jennie Spotila Leave a comment Go to comments
A study published last month* by a group from Norway reports a systematic review of ME/CFS case definitions. It’s important because the Institute of Medicine panel is likely conducting a similar process as part of its work, but the study is also significant for the startling and overreaching conclusions drawn by the authors.

Quick Summary:

  • This study collects and examines case definitions for ME/CFS, and extracts prevalence data. This will be a helpful future reference.
  • The authors then step far beyond their own evidence and draw a variety of overreaching conclusions.
  • Future analysis must be wary of cognitive bias in order to avoid the same mistakes.
What They Did

Bruberg et al began by searching the literature for case definitions of ME/CFS (a term encompassing CFS, ME, and combinations of the two). The group then looked for validation studies, meaning studies that applied one or more case definitions to patient populations. Of the twenty case definitions identified in the first step, seven have never been validated in a patient population. Thirty-eight validation studies were identified that test one or more case definition, but the authors were very critical of the quality of those studies saying, “We did not identify any study which rigorously assessed the reproducibility or feasibility of the different case definitions.”

The authors categorized the validation studies, and the summaries and Tables 1-4 are actually quite helpful. Five studies independently applied several case definitions to a single patient population, and thirteen studies took patients diagnosed under one definition (usually Fukuda) and sequentially applied case definitions assumed to be more specific. The authors caution that this second group of studies “should be interpreted with great caution” because there were so many differences in diagnostic method and definition application, including different thresholds for exclusion of psychiatric comorbidity. Finally, twenty-one studies presented prevalence estimates and the authors extracted data on prevalence rates for Fukuda, Oxford, and the Australia 1990 case definitions.

Personally, I find the collection of these studies and extraction of data to be both interesting and important for future reference. I think it is very likely that the IOM panel is conducting a similar review of the case definition literature, as well. Rigorous examination of case definitions and their applications is essential for the IOM and for the ME/CFS field in general. Bruberg et al found this body of evidence to be “methodologically weak and heterogeneous, making it questionable to compare the case definitions.” What I found both startling and disturbing is that the authors then go on to draw a number of conclusions that are simply not supported by the evidence they examined...

Read more: http://www.occupycfs.com/2014/03/06/systematic-overreaching/