MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME
MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME
MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME
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benefit receipt ‐‐ are important. Even though they admit that their model cannot be tested, they have stated<br />
that the dismantl<strong>in</strong>g of social support, <strong>in</strong>clud<strong>in</strong>g benefits on which sick people rely, may be necessary for<br />
“recovery”. How does the removal of vital support assist recovery <strong>in</strong> any disorder?<br />
Deary et al cont<strong>in</strong>ue: “the evidence does support the conclusion that MUS <strong>in</strong> general, and IBS and CFS specifically,<br />
are multi‐factorial conditions caused and perpetuated by several dist<strong>in</strong>ct processes…the research bears out the over‐<br />
arch<strong>in</strong>g CBT hypothesis that the autopoietic <strong>in</strong>teraction of dist<strong>in</strong>ct but l<strong>in</strong>ked systems could serve to produce physical<br />
symptoms <strong>in</strong> the absence of physical pathology”, a statement that seems to reveal the extent of the authors’ lack<br />
of biomedical knowledge about <strong>ME</strong>/CFS.<br />
Deary et al state: “In CFS <strong>in</strong>consistent and reduced activity, disturbed sleep and catastrophic beliefs regard<strong>in</strong>g<br />
activity and symptoms are the most commonly identified set of factors and therapeutic targets” (commonly identified<br />
and targeted by whom? Certa<strong>in</strong>ly not by biomedical scientists and cl<strong>in</strong>icians).<br />
In the section that is specifically on chronic fatigue syndrome, the authors state: “It is hard to disentangle the<br />
active <strong>in</strong>gredients <strong>in</strong> these treatments (CBT and GET). The CBT tends to <strong>in</strong>volve pac<strong>in</strong>g, graded <strong>in</strong>creases <strong>in</strong> activity,<br />
sometimes exercise, work on a variety of cognitions <strong>in</strong>clud<strong>in</strong>g perfectionist beliefs, catastrophic illness beliefs and<br />
schema work. The GET trials provide a relatively more focused <strong>in</strong>tervention, and we could easily conclude that the<br />
reversal of decondition<strong>in</strong>g is the effective component of this form of treatment”.<br />
Given the previous well‐documented hostility of the Wessely School towards rest and pac<strong>in</strong>g, not only <strong>in</strong><br />
the literature but also <strong>in</strong> the press and <strong>in</strong> the magaz<strong>in</strong>es of the patients’ charities, the authors’ claim about<br />
pac<strong>in</strong>g <strong>in</strong> their 2007 paper is noteworthy, as it seems to be only s<strong>in</strong>ce they were awarded millions of pounds<br />
sterl<strong>in</strong>g for their PACE Trial that they have revised their attitude towards it and have recorded their<br />
changed attitude <strong>in</strong> an article published dur<strong>in</strong>g the life of the PACE Trial.<br />
Deary et al say: “We suggest that we are now at the stage where research should pay more attention to some of the<br />
components of the model and their <strong>in</strong>teraction…The CBT model of MUS offers a previously undescribed illness<br />
mechanism ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g a dist<strong>in</strong>ct group of disorders that we might call autopoietic conditions. Treatment is aimed<br />
at…dismantl<strong>in</strong>g the autopoietic mechanism by mak<strong>in</strong>g changes <strong>in</strong> target areas”.<br />
Hav<strong>in</strong>g noted that Hotopf (a colleague and frequent co‐author with Wessely) has compared the role of<br />
doctors <strong>in</strong> MUS to the role of parents of sick children, and hav<strong>in</strong>g stated that “illness related beliefs have also<br />
emerged as potentially important factors <strong>in</strong> the ma<strong>in</strong>tenance of symptoms”, Deary et al end their paper thus:<br />
“Hotopf (2004) has drawn our attention to the vital role that both doctors and parents (most people with <strong>ME</strong>/CFS<br />
are middle‐aged and their parents are deceased) can play <strong>in</strong> the development, or prevention, of MUS…The right<br />
advice derived from a collaboratively constructed model of symptoms experience could be crucial <strong>in</strong> prevent<strong>in</strong>g or<br />
ameliorat<strong>in</strong>g MUS. In the CBT model, we may just have the means to do this”.<br />
Deary et al make no mention that <strong>in</strong> 1996 Scheper and Scheper argued conv<strong>in</strong>c<strong>in</strong>gly that the autopoietic<br />
system theory as developed by Maturana and Varela is unscientific (Behavioural Science: January 1996:41:1)<br />
and that the autopoietic theory is ignored <strong>in</strong> contemporary biology because the theory’s core constructs<br />
cannot be determ<strong>in</strong>ed, which means that it cannot be empirically tested. Scheper and Scheper concluded<br />
that the autopoietic theory has no explanatory power (ie. theoretical models that cannot be empirically<br />
tested do not have explanatory power, because any theoretical model that claims to provide explanations of<br />
empirical phenomena must be testable).<br />
Scheper and Scheper are clear; hav<strong>in</strong>g noted that the Maturana and Varela autopoietic concept “receives<br />
much attention across the behavioural sciences” but hav<strong>in</strong>g carried out an autopsy on autopoiesis, they conclude<br />
about those who adhere to the notion of autopioesis: “we believe that they should reth<strong>in</strong>k their use of it. The<br />
version of autopoiesis as proposed by Maturana and Varela is unscientific, which means that it cannot be used as a<br />
suitable reference <strong>in</strong> scientific endeavours”.