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CFS prevalence is grossly overestimated using Oxford criteria compared to CDC (Fukuda) criteria

Chronic fatigue syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study

James N. Baraniuk

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.

Abbreviations: CDC: Center for Disease Control; CFS: criteria requiring moderate or severe for fatigue and ancillary criteria; CFS: chronic fatigue syndrome; CFS-Like: CFS-like with insufficient fatigue syndrome; CFSQ: CFS Symptom Severity Questionnaire; CIF: chronic idiopathic fatigue; Oxford: 1991 Oxford criteria; SEID: systemic exertion intolerance disease; Sum8: sum of Severity Scores for the eight ancillary criteria
Abstract only - http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1353578?journalCode=rftg20
 

me/cfs 27931

Guest
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One interesting result not talked about in the abstract is both criteria identify significantly more males than females, in what is usually considered a 75% female disease.

Even the Fukuda results show 56% male vs. 44% female.
Fukuda criteria identified CFS in 2.3% of males and 1.8% of females.

Any speculation on this? Is this just a shortcoming of inadequate diagnostic criteria or the study methodology? Or do more males than females actually have ME/CFS?
 
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32
Both numbers seem way too high, compared to other research and to my own experience.

I used to go to a reasonably sized high school. One time I had a conversation with the school director and he said they never had a CFS patient before. (Out of +- 10.000 students)
Doctors also don't seem to be that experienced with ME/CFS. And I have never spontaneously met another patient in real life.
 

Snow Leopard

Hibernating
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Location
South Australia
Keeping in mind this study lacked proper medical screening and confirmation. Prevalence of chronic fatigue syndromes due to a totality of causes minus the specific exclusions:

Based on our questionnaire data, we used
these three exclusions: (1) HealthStyles arthritis scores plus CFSQ arthralgia severity
scores that reached moderate or severe levels, given the medical implications of
painful, red, hot, swollen joints with decreased range of motion and function as exclusionary
of a CFS diagnosis; (2) transient ischemic attacks which imply significant cardiovascular
disease and strokes; (3) agreement or strong agreement with the statement ‘I exercise 30
minutes every day’ in the HealthStyles questionnaire, which was considered exclusionary
for reduced physical exertion and exertional exhaustion in CFS. Other known CFS exclusions
were not part of the HealthStyles survey.

Also,

The data could not be re-stratified to U.S. Census-based norms because different age groups may have been affected by exercise (younger) compared to arthritis plus transient ischemic attacks (older). The prevalence of CFS was lower in women than men. However, this was because a higher percentage of women had zero fatigue so that their frequency distribution was shifted to the left compared to men (Figure 1). A sampling bias could
explain this relatively higher rate of CFS in males if it was due to an artifact of oversampling low income or rural males who did not work and so had time to complete the survey. African-American men in rural Georgia also had a higher rate of CFS than women [16]. In addition, more women were excluded because of incomplete HealthStyles CFSQ responses and endorsing daily exercise of 30 minutes or longer. Proxies were derived post hoc from the CFSQ and other HealthStyles
 
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3,263
I think they probably actually enrolled a good portion of CFS patients in PACE and FINE. That's why they got poor results.

That they expected good results could suggest that normally their sample is a bit different and responds better.
Or just that fixing some of the bigger methodological problems of previous studies reduces the degree of bias favouring positive results.

If you argue that CBT and GET are probably effective for the "right" patients - and that's someone else not us - you are buying into the very same bullshit we are all fighting against. This idea of a helpless, psychologically distressed patient who feels tired due to deconditioning, that can't organise themselves out of this state without someone to hold their hand.

There is just no evidence that such a patient group exists.

More importantly, by implicitly accepting this dangerous idea - which we do every time we make a "diagnosis" argument in relation to CBT/GET studies - we are deflecting the problem from ourselves and pointing the finger at others.

Not okay.

As far as I can see, there is no evidence that even a small portion of patients benefit from CBT or GET for fatigue, and that individual cases of improvement (beyond self-report) are probably spontaneous remissions.
 
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3,263
PS I think this issue of diagnosis is important for finding answers to what causes our condition.

I just don't think there's any fatigue condition that can be reversed through GET - one where people are just deconditioned and so stupid and helpless that they can't recondition themselves without hand-holding.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
It was always amusing to me, how PACE was based on mental illness criteria they created to allow for ME denial, but when intentionally using alleged mentally ill patients for PACE, CBT/GET still failed, thus proving the therapy is utterly useless no matter who you use it in.

This failure of ethics and politics combined, couldn't have happened to a nicer bunch of people...
 

A.B.

Senior Member
Messages
3,780
If you argue that CBT and GET are probably effective for the "right" patients - and that's someone else not us - you are buying into the very same bullshit we are all fighting against. This idea of a helpless, psychologically distressed patient who feels tired due to deconditioning, that can't organise themselves out of this state without someone to hold their hand.

There is just no evidence that such a patient group exists.

I don't think that this model has any merit. CBT/GET could work for some cases of depression though.

As far as I can see, there is no evidence that even a small portion of patients benefit from CBT or GET for fatigue, and that individual cases of improvement (beyond self-report) are probably spontaneous remissions.

In PACE and FINE it doesn't seem to work. I think there were earlier studies where it seemed to work better. Is that because the sample was very different or because the methodology even worse?
 
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Forbin

Senior Member
Messages
966
If you argue that CBT and GET are probably effective for the "right" patients - and that's someone else not us - you are buying into the very same bullshit we are all fighting against. This idea of a helpless, psychologically distressed patient who feels tired due to deconditioning, that can't organise themselves out of this state without someone to hold their hand.

There is just no evidence that such a patient group exists.

From anecdotal accounts here and elsewhere, it seems as though when people experience a sudden remission they are as likely as not to over-exert themselves (potentially prompting a relapse). This does not sound like the expected "dip your toe in the water" response of people who are fearful of a deconditioned reaction to exercise. It sounds like people who have had the chains taken off.
 

Solstice

Senior Member
Messages
641
I don't think that this model has any merit. CBT/GET could work for some cases of depression though.



In PACE and FINE it doesn't seem to work. I think there were earlier studies where it seemed to work better. Is that because the sample was very different or because the methodology even worse?

I've only seen CBT/GET trials with terrible methodology. Someone on another thread said there were 3 dutch studies using actometers and they all came up empty. Every other trial seems to have the trifecta of unblinded, self-reported measures and lot's of indoctrination to change said self-reported measures.
 

Sean

Senior Member
Messages
7,378
Someone on another thread said there were 3 dutch studies using actometers and they all came up empty.
RESULTS: Although CBT effectively reduced [self-reported] fatigue, it did not change the level of physical activity. Furthermore, changes in physical activity were not related to changes in fatigue. Across the samples, the mean mediation effect of physical activity averaged about 1% of the total treatment effect. This effect did not yield significance in any of the samples.

https://www.ncbi.nlm.nih.gov/pubmed/20047707

No correlation between self-reported changes in the fatigue score and changes in actigraph scores means that there is no possible causal connection between changes in perception due to CBT, and activity levels.

In short, CBT doesn't increase activity levels.

No therapeutic power also means no evidence for explanatory or predictive power either.
 
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3,263
In PACE and FINE it doesn't seem to work. I think there were earlier studies where it seemed to work better. Is that because the sample was very different or because the methodology even worse?
Yes, the methodology was even worse. Small samples, no proper random allocation to groups, lots of drop-outs, no active control. By Psyc standards, PACE is quite good.
I don't think that this model has any merit. CBT/GET could work for some cases of depression though.
The concept of depression is just such a mess. Its a made-up name for a lot of phenomena that are generally bad. I'm not denying the misery and suffering. Just the causal models and the assumption that this is a useful, coherent construct. People who are depressed are almost certainly a heterogenous group. Some will have a biological basis to their depression - something different from ME perhaps, but no more amenable to CBT/GET. Others will have genuinely shit lives without options. Lots of misery and no power. We (generally posh, white middle class) psychologists are great at taking these people and pointing the finger at their negative, maladaptive thoughts etc. As if that were the real problem.

We just take it as a given that there is such a thing as primarily "psychological" depression, that the person has somehow perpetuated within themselves by negative thoughts or feelings or some such ("rumination" is a popular conception). And these "psychological" factors can somehow can be corrected/reversed through purely psychological/behavioural interventions. This "correction" idea is pretty much the core of CBT. Do we know that CBT works for anyone? I would say no. There is evidence that having someone nonjudgmental to talk to might be a good thing if you're sad and distressed. That's it. All the rest is conjecture and posturing.
 
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3,263
Sorry, to go off on a rant, @A.B. I'm slightly annoyed right now about a post at Mental Elf from a patient researcher many of us know. The post hints at this person's general view that psychological and behavioural interventions are just perfect for all the crazy patients out there that don't fit her very restrictive definition of what "real" ME is.

Talk about finding yourself a safe seat and throwing everyone else under the bus.
 

A.B.

Senior Member
Messages
3,780
@Woolie thanks for your contribution. I've generally taken the position that whatever people in PACE had, CBT or GET didn't work. Yet the possibility that it might work for a portion of patients still has to be considered. I think it adds to the credibility of our criticism if we're also honestly able to consider views that differ from our own. Why did the PACE authors expect good improvement from CBT/GET? Maybe they have been fooling themselves with poor methodology all these years and that clearly happened to some degree, but another possibility is that maybe there really is a subgroup out there where this approach is somewhat helpful. Maybe some form of depression, maybe graded exercise can speed up recovery when the patient is already in remission. I'm perfectly comfortable with the idea that it's all just nonsense too though.

I like your rants, please don't stop ;)

I know who you are referring to and share your views.