From the PACE newsletter:
outrageous!
That wily Dr. Chia is now trying to pass off patients with somatic symptoms and "even signs" as CFS patients! Where would we be without true heros like Peter White protecting us from quacks like Dr Chia?
Hugs from the USA!
From White: "The laboratory work [presented by Dr Chia] looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients."
This is a key issue, one which I have noticed has become more and more evident, even with the publication of the PLOSONE paper by McClure et al and the explanatory letter given by Cleare, Wessely et al on the PLOSONE 'readers comments' page (which I responded to). There were key assertions made that indicated clinical signs associated with organic disease were EXCLUSIONARY criteria for admission to certain research cohorts, even if, for example, Fukuda et al PROSCRIBE most medical investigations in CLINICAL settings!!! (How absurd is that? But look at Fukuda and the evidence is there. It truly is astounding what is said in Fukuda). White's department at Barts basically made the same assertions about GI problems in 'CFS' in response to the NICE draft Guidelines, as TomK has highlighted before (and some other stuff about wheelchair use and levels of impairment, for example, which I think is relevant to this issue).
It does appear that key 'organic' signs and symptoms ARE frequently experienced by people given CLINICAL diagnoses of 'CFS' or 'CFS/ME' - such gastro-intestinal signs and symptoms as identified by Chia, for example. Indeed they are given as a possible set of symptoms in the Canadian Guidelines.
HOWEVER, it is wholly possible people suffering from symptoms and signs such as those, are NOT being recruited into CBT/GET and other trials (or indeed, the XMRV research Cleare and Wessely co-authored). In fact I'd go so far as to say the evidence to support what I'm saying here is growing.
Nevertheless, people, very ill people with sometimes severe GI problems, for example, are being given Oxford 'CFS' diagnoses (even where in research cohort settings they would be excluded) and packed off to the CLINICS (away from any research process) to be processed through CBT/GET (even if this is potentially dangerous for them), given minimal investigations, and basically subject to all the adverse effects of psychogenic dismissal.
Now this leads to a very 'interesting' possibility. Sharpe et al asserted in 1997 that:
“Abnormal physical signs should not be accepted as compatible with a diagnosis of CFS.”
If this prescription were to be taken literally, there is good reason to predict that many people given a diagnosis of ‘CFS’ would have to be subsequently excluded from such a diagnosis, as the incidence of clinical signs and laboratory-elucidated abnormalities in the biomedical research populations alone is high, let alone clinical populations.
Yet White etc. to the best of my knowledge, are still accepting patients at their CLINICS, who should by their own RESEARCH standards (and White's own comments such as above) be excluded. Furthermore, Cleare and Wessely claim in their PLOSONE response that their populations are representative of CFS populations in the UK!
Again - the PACE cohort is problematic at best - issues identified by some of us before the trial was started. FINE also (I still need to read the full BMJ paper which I haven't been able to access yet.)
The apparent refusal (and certainly neglect) to establish research populations of at least Canadian defined 'ME/CFS' sufferers in the UK becomes more culpable, shall we say, as time goes on. There is enough evidence to suggest research bods ARE aware of these discrepancies.