MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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Two years after publication of that article, Jason, Najar, Porter and Reh investigated the Reeves et al 2005
CDC empirical case definition of “CFS” (http://www.biomedcentral.com/content/pdf/1741‐7015‐3‐19.pdf)
and found that it had “broadened the criteria such that some individuals with a purely psychiatric illness will be
inappropriately diagnosed as having CFS” and that “Inappropriate inclusion of pure psychiatric disorders into the
CFS samples may further contribute to the diagnostic skepticism and stigma that individuals with this illness
encounter. Several researchers continue to believe that CFS should be considered a functional somatic syndrome”.
Jason et al repeat their warning given in 2007: “assessment and criteria that fail to capture the unique
characteristics of these illnesses might inaccurately conclude that only distress and unwellness characterise CFS, thus
inappropriately supporting a unitary hypothetical construct called ‘functional somatic syndrome’. Such blurring of
diagnostic categories will make it even more difficult to identify biological markers for this illness, and if they are not
identified, many scientists will be persuaded that this illness is psychogenic”. Jason et al note that, using the
Reeves et al criteria, 100% of the MDD (major depressive disorder) group met the Reeves et al CFS criteria,
indicating that the Reeves et al criteria do not distinguish between people with CFS and MDD.
The prevalence rate for the Reeves et al 2005 empiric criteria is 9.69 times the CDC 1994 Fukuda criteria; put
another way, only 10.31% of those who satisfy the Reeves et al empiric criteria would satisfy the CDC 1994
Fukuda criteria, which themselves do not identify people with Ramsay‐defined ME: ie. a person could
satisfy the CDC 1994 Fukuda criteria and still not have ME (Tom Kindlon. Co‐Cure ACT 3 rd November 2009,
who also pointed out that in one of the Reeves et al studies, medical exclusions included an abnormal
Romberg test, which is curious, given that it is used to support a diagnosis of Ramsay‐defined ME).
Jason et al also note that the Reeves et al case definition “does not distinguish critical symptoms for CFS such as
postexertional malaise” and that as a result, the estimated rate of “CFS” has increased about ten times higher
than previous estimates of both the CDC and other researchers, which brings it within the range of several
mood disorders. Jason et al comment: “It is possible that using this broadened CFS empirical case definition, some
patients with a primary affective disorder could be misdiagnosed as having CFS. Some CFS investigators would not
see this as a problem because they believe that CFS is mainly a psychiatric disorder and that distinctions
between the two phenomena are superficial and merely a matter of nomenclature” (Evaluating the Centres
for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. Leonard A Jason et al. Journal
of Disability Policy Studies 2009:20:2:93‐100).
Abuse of Process?
It cannot be reiterated enough that many people – including patients with ME/CFS, their families,
academics, medical scientists, informed clinicians – are deeply dismayed by the apparent abuse of the
scientific process that seems to have been perpetrated by the MRC, the Principal Investigators and
indeed by all those involved with the PACE Trial.
In March 2003 the House of Commons Select Committee on Science and Technology produced its Report
“The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the
MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. The
Select Committee had received seven representations about the MRC’s refusal to heed the biomedical
evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically‐driven”
projects that have diverted money away from top‐quality proposals. The unprecedented attack was the
result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC
was content to support policies and projects that are likely to perpetuate such criticism.
The most obvious questions arising are (i) why should psychiatrists and a behavioural therapist be carrying
out clinical trials on people with a complex neuro‐immune disease and (ii) what are their motives for doing
so? The evidence points to the possibility, indeed the likelihood, that patients’ needs are of secondary, not
primary concern, because the objective of the Trial seems to be to reduce the number of people with