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

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“ Attempting to come to a consensus between two opposing groups was a mistake and is at best questionable scientific
method.
“It’s time to adopt the Canadian Criteria, which at least are written by clinicians who have long dealt with those
suffering from the malady once known as myalgic encephalomyelitis. The further one gets from actual case
studies, the further one gets from finding a way to ease suffering. It is unacceptable for one group of theoreticians to
ignore replicable scientific studies and be considered the equal of those who approach the illness
scientifically. You are playing with a lot of lives and a great deal of suffering”.
As US ME/CFS sufferer John Herd noted: “The English healthcare system has openly committed itself to a proposed
behavioural model for the illness and behavioural treatment approaches” (Co‐Cure ACT, 19 th August 2009).
This is a matter of international concern and comment: Dr Alan Gurwitt, a US psychiatrist who does not
subscribe to the Wessely School’s behavioural model of ME/CFS, expresses his dismay and frustration:
“Nationally and from around the world, the stories are much the same. People with CFS/ME, adults or children,
suffering from multiple symptoms, with varying degrees of severity, are dismissed and improperly diagnosed or treated.
They are either told that it’s all in their heads or yes, it might be CFS/ME but there is nothing much that can be done
for it. And yet the patterns of CFS/ME, the diagnostic steps necessary, and the treatment possibilities are clear enough
to those health professionals who are knowledgeable about them and who are aware that there is much that can be done
to help. Why still are so many other physicians relatively ignorant about or dismissive of CFS/ME? Is there not
sufficient information available? There is now a wealth of good information available from research and clinical
experience. Is skepticism as to the realities of CFS/ME and FM still so prevalent that there is little or no motivation to
learn about these illnesses? Well, sadly, yes. Are the relative ignorance and skepticism important? They sure are, as
testified to by patients around this state and elsewhere. Are the skepticism and relative ignorance even harmful,
causing unnecessary suffering? Most certainly yes. The lack of correct diagnosis, treatment steps not
taken, disdainful and dismissive attitudes do hurt people. Are the skepticism and ignorance simply the result of
individual physician decisions? Not at all. The CDC and NIH in the USA, the NHS in the UK, medical societies and
medical schools, and prestigious journals, no matter what is said, if anything, SHOUT, by means of
their silence or lack of effective action, their disinterest and disbelief. It is the brave physician who dares to be curious,
to look for information, to climb over this wall of disdain and ignorance. These skeptics predominate in government,
medical school and journal hierarchies so they have, in effect, blocked and can continue to
block the research and clinical teaching necessary to change the picture. In my experience there are at least two root
causes for the prevailing ignorance among physicians and other health professionals. One is simply lack of familiarity
with the now ample scientific understanding of CFS/ME and its diagnosis and treatment. The second
is a kind of ʺold boy biasʺ, opinions formed many years ago, passed on by a form of group‐think as the proper and
prevailing views, untouched, unexamined, unchanged, and driven by an unwillingness to
learn about the new research. Perhaps this situation will change once irrefutable biomarkers are real, but in the interim
much harm is being done, much relief not provided. Every week I hear more of the stories of misdiagnosis and
mistreatment from within our state and beyond, some of the stories more egregious than others.
When is enough ignorance enough? Do we just sit back and keep our fingers crossed or try harder to find ways to make
up‐to‐date information available? Or when the stories of ignorance and harm being done pile up in relation to a
particular medical school or institution, or government agency or physician, should we take constructive action? Nor
will any of this change until attitudes, not just evidence, change. Yes, we need biomarkers, but there is enough evidence
now to spur new learning. When the evidence is there, but the will to study it is not, and then harm is done out of this
ignorance, does that become an ethical issue, rather than a scientific one? When is enough (ignorance) enough?” (Co‐
Cure ACT: 19 th August 2009).
As mentioned above, US expert Professor Leonard Jason et al point out that “measurement that fails to
capture the unique characteristics of these illnesses might inaccurately conclude that only distress and
unwellness characterise these illnesses, thus inappropriately supporting a unitary hypothetical construct
called functional somatic syndromes” (JCFS 2007:14(4):85‐103), but neither the Wessely School nor
UNUMProvident seems even to consider the need to capture the unique characteristics of ME/CFS.