Medical Research CouncilWhat is MRC?
Medical Research CouncilWhat is MRC?
What is with all the patients that present with PEM? I mean, if you don't know what you have you don't go to the doctor and say "I have CFS" or "I have chronic fatigue" (unless of course you feel chronically fatigued - whatever fstigue is, I don't undrrstand it entirely). You say what your problems are. If I tell doctors my main problems are PEM (I use different words of course) and that the muscles burn instantly, there's nearly always a blank look. No talk of tiredness or fatigue from my side..Since most doctors don't know what to do with it some invent their own story that feels much more familiar.Observations concerning the characteristics of patients who presented to a medical clinic with a principal complaint of chronic medically unexplained fatigue (Chronic Fatigue Syndrome or CFS) are described, including the cognitions (thoughts and assumptions) elicited from a sample of these patients who were treated using cognitive behavioural therapy.
Do some people here know a fatigue that is disabling? (Fatigue, not exhaustion, weakness...)
Yes - but only when my thyroid meds need to be adjusted/increased or when I'm anaemic. Completely different feeling, I think.
ETA - as far as I know I would be excluded from the Oxford criteria due to neuro symptoms
Taken from http://www.investinme.org/Article422 Grey Information about ME CFS.htm
"Professor Michael Sharpe, recently responded to criticism of the PACE Trial (doi:10.1016/j.jpsychores.2011.03.003) by attempting to justify the use of the Oxford criteria (of which he was lead author) stating:
“While we excluded people with generally accepted organic brain diseases…we did not exclude people who described their symptoms as those of ME”,
yet ME is a WHO-classified neurological disorder, so Sharpe’s argument is intellectually inconsistent. His position itself is intellectually inconsistent because he bases it on “CFS/ME” being “disabling longstanding fatigue” and gives no credence to the presence of the symptoms that distinguish ME/CFS from chronic fatigue."
The Oxford criteria are presented as the product of a consensus meeting. Recent reading suggests that there might have been less consensus than one might be led to expect.
The consensus meeting in Oxford (Sharpe et., 1990) attempted to set out the minimal set of findings which should be recorded in future studies of chronic fatigue syndromes. Many of these are of a very general nature, and are not applicable specifically to a particular fatigue syndrome with a well defined set of symptoms, such as ME. Nevertheless there must be specific criteria for patient selection, for measurement of associated laboratory findings, and for assessment of disease severity. Whether the effect of a possible treatment is being studied, or the natural history of the condition followed, the basic epidemiological data are necessary.
Mowbray J Directions for future research in Post-viral Fatigue Syndrome eds Jenkins/Mowbray 1991 p436
In Great Britain, proposals for a consensus of minimum requirements for diagnosis so that further research can be carried out into chronic fatigue syndrome (CFS) and PVFS, show uncertainty. Guidelines from the MRC may also be unhelpful, since they suggest that CFS is a better term than postviral fatigue syndrome. In our opinion, however ,the lack of a precise definition for CFS leaves everything to be desired.
PO Behan, AMO Bakheit Clinical spectrum of postviral fatigue syndrome in British Medical Bulletin (1991) vol 47 no 4 p794
This appears to tell us something about the conduct of the meeting, or the meaning of consensus. One or the other.
My understanding is that Behan was involved in these discussions but he was not present at final meeting. Since he diagnosed me with ‘myalgic encephalomyelitis/severe postviral fatigue syndrome’ in early 1984 and treated me with experimental immunotherapy and plasmapheresis it is most likely he would have disagreed with this ‘consensus’ of Sharpe et al.
ABSTRACT
Background: Results from treatment studies using the low-threshold Oxford criteria for recruitment may have been overgeneralized to patients diagnosed by more stringent chronic fatigue syndrome (CFS) criteria.
Purpose: To compare the selectivity of Oxford and Fukuda criteria in a U.S. population.
Methods: Fukuda (Center for Disease Control (CDC)) criteria, as operationalized with the CFS Severity Questionnaire (CFSQ), were included in the nationwide rc2004 HealthStyles survey mailed to 6175 participants who were representative of the U.S. 2003 Census population. The 9 questionnaire items (CFS symptoms) were crafted into proxies for Oxford criteria (mild fatigue, minimal exclusions) and Fukuda criteria (fatigue plus ≥4 of 8 ancillary criteria at moderate or severe levels with exclusions). The comparative prevalence estimates of CFS were then determined. Severity scores for fatigue were plotted against the sum of severities for the eight ancillary criteria. The four quadrants of scatter diagrams assessed putative healthy controls, CFS, chronic idiopathic fatigue (CIF), and CFS-like with insufficient fatigue subjects.
Results: The Oxford criteria designated CFS in 25.5% of 2004 males and 19.9% of 1954 females. Based on quadrant analysis, 85% of Oxford-defined cases were inappropriately classified as CFS. Fukuda criteria identified CFS in 2.3% of males and 1.8% of females.
Discussion: CFS prevalence using Fukuda criteria and quadrant analysis was near the upper limits of previous epidemiology studies. The CFSQ may have utility for on-line and outpatient screening. The Oxford criteria were untenable because they inappropriately selected healthy subjects with mild fatigue and CIF and mislabeled them as CFS.
CF (Oxford criteria)
In the beginning of the 1990’s researchers in the UK start using their own definition of ‘CFS’, the so-called Oxford definition [17,18]. However ‘CFS’ defined by the Oxford criteria should best be labeled CF, since in contrast with CFS, the only symptom required to meet the diagnosis ‘CFS’ is severe and disabling fatigue of definite onset. A common interpretation of the Oxford definition, i.e. a cut-off score on the Chalder Fatigue Scale [19], is used in studies into Cognitive Behavorial Therapy (CBT) and/or Graded Exercise Therapy (GET) to select patients and to define ‘recovery’ [20-22].
Since its introduction, the Oxford case criteria have endured much criticism, since they don’t select patients with CFS, let alone ME, but patient with chronic fatigue.
Medical authorities in the US recently took a firm stand with regard to the Oxford criteria [17]: The multiple case definitions for ME/CFS have hindered progress. In particular, continuing to use the Oxford definition may impair progress and cause harm. We recommend that this definition be retired [23]. We recommended in our report that future intervention studies use a single agreed upon case definition, other than the Oxford (Sharpe) case definition.” [24].