Journal of IiME Volume 6 Issue 1 (June 2012) control network which we know to be present by its disregulated causal efficacy in the world, even if we do not yet know what its details are, and which we are calling “ME” in honor of the earlier (and current) sufferers and prescient observers of this kind of suffering. Other earlier and revised case definitions based on the disease concepts of Ramsay had made postexertional malaise and impairment of memory and concentration central to the diagnosis of ME (Lloyd AR et al Med J Aus., 153: 522-528, Goutsmit, E et al Health Psycholog. Update 18:27-31), but none before the Canadian Definition of 2003 had made this specific dynamic and projectable pattern of pathological fatigue criterial for the diagnosis of ME/CFS, and the ICC case definition of ME is carrying on and developing this strategy further. The specificity of this illness pattern provides a level of detail that is necessary for patients to adapt to the aberrant pattern of fatigue as experienced in their own illness using pacing. Research can be designed to study the pathogenetic details of this particular pattern and the many others that I expect will be uncovered as the ICC strategy is used more widely, with the assurance that results are not being continually diluted out by the 90% majority of CFSers who don’t have this kind of fatigue pattern. We can finally search for specifically directed remedies. This is the way towards scientific progress after what has been a long delay, indeed a paradigm war- not arguments between results but between opposing assumptions made before beginning observations. All three of these contributions agree on one point- that whatever it is we are talking about, it is a complex disease/illness- but on little if nothing else. There was special confusion on whether we were talking about CFS or ME, regarding them as mutually exclusive dualistic entities and not complementary parts of a single disease concept. And confusion reigns about what we mean by complexity itself in various realms (the topic itself is complex)- and we are dealing with the realm of medicine, where not much serious thought has been put to it as yet, e.g. producing long symptom lists and symptom counts doesn’t help. Simple or Complicated structures have a known stable causal structure, of variable intricacy, that hence are predictable if you can extrapolate from knowledge garnered from one astute observation. Complex structures do not, as their causal Invest in ME (Charity Nr. 1114035) structure is forever recursively changing-as a result of the causal interaction of their constituents-and hence are inherently unpredictable. As a consequence a complex structure must be observed continually, while the complicated one does not have to be, while confirming/disconfirming inferences, tests, and imagings are made. For complex diseases the only observer who is constantly observing the patient is the patient her/himself. We all must learn to utilize this kind of continual common sense selfobservation by patients in dialogue with their physicians, as we together observe the development of complex diseases over real time through a robust and productive doctor/patient relationship. This will entail a large qualitative shift in attitude and appreciation of the value of the direct self-observation of illness structure as it evolves in real time, if done properly- and without diversion into cognitive dualisms. There are also repercussions of post-cognitive theoretical moves in psychology into direct nonrepresentational perception and radical embodied cognitive science ( see “Radical Embedded Cognitive Science) Anthony Chemero MIT Press, 2009 and “The Mind, the Body and the World- Psychology after Cognitivism? Ed. B Wallace, A Ross, J Davies and T Anderson, ImprintAcademic.com, 2007.), which point to the need for a distinct shift in strategy (in our realm of medicine) from its current emphasis on developing generalized cognitive disease models to directly observed, individuated diagnosis of illness and its therapeutics. This is also emphasized by the development of bottom-up systems biology and translational and systems medicine (Nielsen J.J Internal Medicine 271, pp 108-110). Our current treatment of symptoms and syndromes in diagnosis and prognosis, and of pacing and the role of self-organization in therapeutics, will also need great adjustments as we move from an “anthropogenic” to a “biogenic” approach to them. (see “The biogenic approach to cognition” Pamela Lyon, Cognitive Processing 2007: 11-29) . Opportunities are arising with the rapid development of technology to allow direct confirmation of the clinical symptoms and signs observed by individual patient/physicians without a detour through the medical model, but by attending to directly observed individual illness structure, with mutual transductive confirmation www.investinme.org Page 11 of 108
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