Article: Lost in the World: the Romberg Stance and ME/CFS

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The CDC (even before the "empiric" criteria) excluded people from their CFS studies if they had an abnormal Romberg Test!


http://www.biomedcentral.com/1471-2377/4/6/

Sample characteristics

One subject attending the clinic was dropped from analysis because missing data did not permit scoring of any factor in the SAQ. Demographic and clinical characteristics of the remaining 339 subjects in the sample are shown in Table 1 along with the distribution of these characteristics by fatigue group. Over half the fatigued subjects (145/277, 52.3%) as well as one not fatigued subject had exclusionary medical or psychiatric conditions identified during the clinical evaluation. Medical exclusions identified during the clinic visit included abnormal blood or urine tests, abnormal Romberg test, adrenal insufficiency, bladder tumor, BMI = 47, cerebral palsy, chronic hepatitis, emphysema, heart disease within 2 years of evaluation, hypertension, hypothyroidism, inflammatory bowel disease, kidney cancer, lupus, melanoma, uncontrolled diabetes, rheumatoid arthritis, self-reported sleep apnea and narcolepsy, and major surgery within the past year. Psychiatric disorders included anorexia or bulimia nervosa, bipolar disorder, delusional disorder, and major depressive disorder with melancholic features.
 
Good spot Dolphin, and excluding inflammatory bowel disease and self-reported sleep apnea and narolepsy as well is surely going to eliminate another huge proportion of us. Since the things they are eliminating are themselves unexplained, you have to then wonder what they are doing about those of us who do have all those other symptoms which they have eliminated.

It as though they were determined to define CFS as a group of people who weren't really sick, by their own definition, and leave all the sick people out of the whole equation. It's as if the term they created was intended to be a definition of people who definitely had nothing wrong with them, which then explains why they go on to be determined to insist that people with CFS can't possibly by sick, by a process of circular argument.

Which all begs the question: what are they defining us as, then, if we are excluded from their concept of CFS? And who the heck are all these other people, who are "tired all the time" but don't have any of these other problems at all? But it perhaps goes some way to understanding the CDC mentality: they would presumably say to us: "You can't possibly have CFS, if you are really sick, because 'CFS' means 'not really being sick', don't you get it? What you have is something else"...it seems to be unspecified what that other condition should be called though...since "ME" apparently doesn't exist either...

I really do suspect this is the context for the CDC negative cohort - negative by Lo/Alter as well, which is the best comparison point we have between the positive study world and the negative study world. It's certainly how they will want to come out of the XMRV episode: with none of the patients they used to study having been infected (all the blood's gone now so the evidence is destroyed...). It really is possible that if their strategy was to explicitly exclude anybody with the actual illness from their studies, and thus to define (or create?) a psychological population, their cohort may have had no XMRV (or ME patients) in it at all.
 
Another question arising in my mind: after about 5 years of ME/CFS, I became clinically depressed...at that point, would I have lost my CFS diagnosis according to them?...until my depression subsided and I was back to just ME/CFS again of course...
 
Bumping for @Gingergrrl43 and @JoanDublin

Thought y'all might be interested in this. Tc .. x

Ps. I just realized I've been spelling Romberg with an 'h'.
 
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