I had intended to keep this "diary" but have failed to write any posts for weeks, because I simply forgot! Due to CFIDS "brain fog" I have to write down literally everything in my notebook in order to remind myself to do things. For example, I must make a note to "pay bills!" even though the bills are clearly visible in front of me, in the inbox on my desk. At times I get the nagging sensation that I have overlooked something, so I refer to my notebook to find out. I don't think there is any question that CFIDS has a mental component and it is probably measurable. I've grown considerably stupider since the onset of my illness, as evidenced by IQ tests. In childhood I was evaluated, possibly due to concerns about odd behavioral issues (autism spectrum? nothing was ever diagnosed, as far as I know), but subsequently I was skipped forward two grades and I was not allowed to ever get less than an "A" in school. When I took an IQ test in my healthy 20s, the result was 147, which I find dubious, because if I'm really so damn smart, why haven't I been more successful in life?!
In 2011 the results of the PACE study were published in the Lancet and heralded as a major breakthrough in the "treatment" of CFS. The poorly designed "study," which was based on Dr. Wessely's earlier "research" and involved several of the same design flaws, not surprisingly confirmed his previous "findings," except that the percentage of "recovered" patients was slightly lower. Insurance companies and government disability agencies were delighted at the PACE results which "proved" that CFS is not an illness requiring expensive medical treatment, laboratory tests, specialist consultations and/or Disability benefits but rather, a mental condition that can be "cured" by positive thinking and exercise. [heavy sigh] [big eye roll]. Patients who had already tried that approach for years without any success were understandably less thrilled. Any doctors who spoke out in criticism of PACE, requesting more actual research into biological causes and treatments of the disease, were called "quacks," "crazies," or "unhinged crusaders" and accused of "harming patients." I wrote this blog post in response to the ongoing controversy, not that I believe anybody gives a damn what I think.
Today I was pleasantly surprised when a friend gave me a link to a wonderful article about the flawed PACE "study" and that reputable experts are now demanding its retraction! The article includes a link to one of my favorite reference sites, Virology Blog, which discusses at some length how the PACE trial was discredited by science last year and why it should be retracted. VB has addressed many of the same complaints that I had about the Wessely approach, its premises and conclusions. It should be noted that Virology Blog, as one might infer from the name, does not normally address psychiatric conditions, yet has a page devoted to ME/CFS.