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

[thijs]

@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.

Personally, I don't rule out the option that CFS = physical problem + central sensitization.
CBT/GET creates a strict daily schedule, which reduces the focus on symptoms.

But if that would be the case, then the PACE style CBT/GET would be the wrong treatment.
If someone tells me I'm deconditioned, have false illness beliefs, and 20 more factually wrong claims, it will only leave me confused. I will then start paying MORE attention to my symptoms, to check if the symptoms aren't indeed just normal body signals.

This could explain why CBT/GET helps some patients, harms others, but no one fully recovers.
(Because it only affects the symptom sensitivity, not the actual the problem.)

 

[Demepivo]

The full paper is now available on Sci Hub

http://sci-hub.cc/10.1080/21641846.2017.1353578

 

[Valentijn]

And they still couldn't get a result in PACE.

PACE also required an SF36-PF score of 65 or lower for recruitment. This probably weeded out most of the physically healthy fatigue cases.

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?

The samples were very different - generally just needing Oxford fatigue, with no indication of disability required. Baseline CPET scores, when available, were already pretty normal. So they did a pretty good job at avoiding most ME patients, and certainly did not include any that were moderate or severe.

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 also recall a pretty big difference in the male:female ratio in the GET arm of one study compared to the control arm. This would likely account for better average CPET scores in the GET arm after the healthy people go through an exercise program, since men naturally get far higher scores.

Personally, I don't rule out the option that CFS = physical problem + central sensitization.

The research rules it out pretty well. There's simply too many indications of muscle, immune, etc involvement in a peripheral context. And treatments based on central or psychological theories have already failed extensively. Not ruling out central sensitization at this point is about as reasonable as not ruling out alien abductions.

 

[Stewart]

So if I've understood this paper correctly - and I quite possibly haven't - 90% of people who meet the Oxford criteria for CFS don't meet the Fukuda criteria? Did we previously have any data to show that such an overwhelming majority of a patient sample chosen using the Oxford criteria won't have PEM as a symptom?

(I realise that Fukuda doesn't strictly speaking require PEM... but brain no function good today, and I can't think of a better way to express what I mean)

That would seem to me to be a very strong argument against relying on the results of any trial where the Oxford criteria alone have been used to determine the patient cohort. If as few as 10% of the participants in the trial actually had CFS as it's generally understood, how can you possibly undertake any meaningful interpretation of the results?

 

[RogerBlack]

The samples were very different - generally just needing Oxford fatigue, with no indication of disability required. Baseline CPET scores, when available, were already pretty normal. So they did a pretty good job at avoiding most ME patients, and certainly did not include any that were moderate or severe.

i think it's perhaps misleading to say this.
The samples did not only just require Oxford fatigue.
The samples required GP diagnostic delayed cohort+ GP screening for other things as part of their normal routine + NICE guidelines + reluctance to refer onto secondary care + patient agreement to enter trial + Oxford.

This would have looked rather different from if you screened the population as a whole with oxford.

The baseline CPET scores say relatively little, unless repeated if you believe other work that for mild cases say there is no deconditioning evident on the first CPET.

 

[Valentijn]

The baseline CPET scores say relatively little, unless repeated if you believe other work that for mild cases say there is no deconditioning evident on the first CPET.

There's a range of CPET scores which can indicate someone is deconditioned while being healthy. It overlaps somewhat with mild ME cases on the first day, though not the 2nd. However moderate-severe cases will score far too low for otherwise-healthy deconditioning to be a possibility, even on a single CPET.

 

[Woolie]

Personally, I don't rule out the option that CFS = physical problem + central sensitization.
CBT/GET creates a strict daily schedule, which reduces the focus on symptoms.

Here, you seem to be using the term central sensitisation to mean too much focusing on one's symptoms. Why not just say that if that's what you mean - we are all sick of the euphemisms that are used by psychobabblers to subtly promote psychological views of our disease.

That not focusing on symptoms thing can be risky too. Many people have tried that and found the result was overdoing it and disaster.

I say stay safe: listen to your body and use what you hear to direct your activities.

 

[Sean]

we are all sick of the euphemisms that are used by psychobabblers to subtly promote psychological views of our disease.

And sometimes not so subtly.

 

[A.B.]

This paper has some serious limitations by the way. Going over a checklist of symptoms isn't a good way to diagnose anything.

How many of the people meeting the Oxford definition as used here in the paper would describe themselves as chronically ill?

Oxford CFS also requires "severe disabling fatigue" so one could argue that this paper is misrepresenting the Oxford definition.

Is the author misrepresenting the Oxford definition or does it effectively require what is only mild fatigue while calling it severe?

 

[thijs]

Here, you seem to be using the term central sensitisation to mean too much focusing on one's symptoms. Why not just say that if that's what you mean - we are all sick of the euphemisms that are used by psychobabblers to subtly promote psychological views of our disease.

That could be interpreted as "some patients feel more fatigue because they pay more attention to it". I hypothesized a physiological change why some patients feel extra fatigue, on top of a biological illness.

Personally I don't see that as psychobabbler domain, some years ago I came across sensitization in cancer and autoimmune research as well. Or the term must have been hijacked since then, I wasn't aware of that.

 

[A.B.]

One obvious problem with sensitization is that you need to have an underlying pathology in the first place, otherwise there would be nothing abnormal to be paying attention to (unless you think that patients are in some sort of hysterical frenzy where every day sensation are misinterpreted as major illness, but that's so crazy surely nobody can genuinely believe that).

 

[RogerBlack]

There's a range of CPET scores which can indicate someone is deconditioned while being healthy. It overlaps somewhat with mild ME cases on the first day, though not the 2nd. However moderate-severe cases will score far too low for otherwise-healthy deconditioning to be a possibility, even on a single CPET.

I don't disagree with this - but for a trial that is aiming not to recruit moderate-severe patients (PACE), the fact that a CPET test (not 2nd day) is within population norms doesn't mean anything with regards to if or if not the patients actually have ME/CFS, and can't be used to assess entry criteria.

For those with second day CPETs, then yes, you can use this as a marker of ME/CFS and look at how many real CFS patients the trial criteria found vs confounders.

 

[Darach]

Tired workaholics being labelled CFS patients?

It could be the other way around and the 4 times more women with CFS figure is because too many men with CFS are dismissed as tired workaholics.

 

[Barry53]

It could be the other way around and the 4 times more women with CFS figure is because too many men with CFS are dismissed as tired workaholics.

There are all manner of potential reasons, possibly worthy of its own investigation to unravel.

 

[JaimeS]

Doctors also don't seem to be that experienced with ME/CFS. And I have never spontaneously met another patient in real life.

They're using survey data, so it has nothing to do with who manages to reach a diagnosis, which would be very few! The commonly stated stat is that 80% of those who meet diagnostic criteria for ME/CFS (also as determined by survey) do not have that diagnosis.

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.

THANK YOU, @Woolie. Let's stop presuming BPS theory itself has any validity: there's no evidence to support it.

However moderate-severe cases will score far too low for otherwise-healthy deconditioning to be a possibility, even on a single CPET.

*raises hand*

True of my single-day CPET. But can you cite? I'd like to see what makes you say so.

(unless you think that patients are in some sort of hysterical frenzy where every day sensation are misinterpreted as major illness, but that's so crazy surely nobody can genuinely believe that).

Um.

Hypochondriasis:
Misinterpreting normal physical sensations as symptoms of a disease.

They think it's a thing. This was Walitt's description of fibromyalgia, as I recall.

Unless that was sarcasm, in which case I apologize, I must not have seen your facial expression through the screen.

 

[Valentijn]

True of my single-day CPET. But can you cite? I'd like to see what makes you say so.

I don't remember ... it's been a while. But it was pretty basic general knowledge about the CPET (regarding deconditioning ranges), so wikipedia or similar might have it or link to it.

 

[JaimeS]

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.

This is one of my absolute pet peeves, because it's a re-working of the BPS model itself to exclude the speaker.

· The experts tell me that I am faking. They seem very convinced. They are experts.

· There must be another group who IS faking, but I am a Good Patient. I do not belong to this group of fakers.

· This group of fakes is why physicians think we’re ALL fakers. It’s reasonable that they think so and it’s these patients’ fault that they do.

I don’t think that those who subscribe to this school of thought are really aware that they took on the guilt of the Undeserving Ill role, and then deflected it onto other patients in order to ensure it didn't 'stick' to them.

Put another way, patients who do this are doing to other patients what Wessley and Chalder do to us all.

 

[RogerBlack]

I am not awake right now.
However.
Wasn't there an EC paper that, using survey data from a NHS population survey, and purportedly oxford criteria, found ~2.5%.

 

[Woolie]

That could be interpreted as "some patients feel more fatigue because they pay more attention to it". I hypothesized a physiological change why some patients feel extra fatigue, on top of a biological illness.

In the very next sentence, you said

CBT/GET creates a strict daily schedule, which reduces the focus on symptoms.

Personally I don't see that as psychobabbler domain, some years ago I came across sensitization in cancer and autoimmune research as well. Or the term must have been hijacked since then, I wasn't aware of that.

Yes, it is psychobabble. It is a way of suggesting that in all these terrible diseases, the person exacerbates their suffering though some sort of "central" mechanism, so that their experience is now completely out of proportion with the level of disease in the body.

In principle, the culprit could be some unspecified brain structure whose responses to pain signals increase over time despite no change in the stimulus. However, there is no brain structure that has yet been found that behaves in this way, so the whole idea is pretty close to magical thinking (pain sensitisation is a real thing, but it involves successive stimulation over a very short period - minutes not years - and its not central but peripheral). Its a good sell to patients though, because it doesn't sound like a psychological account when its put that way.

In practice, central sensitisation is used to describe the idea that a person has become overly focussed on their symptoms. So they react to them and experience them in a way that is way out of proportion with the actual severity of the disease. That's how you were using it. You suggested having a schedule might take people's minds off their symptoms, that's very much the core idea under symptom focusing.

Edit: @thijs, I just re-read my post, and it sounds angry. I wanted to say that the anger is not directed at you - its at these ideas and how they are misused. The rhetoric that they use is pretty clever and the ideas are so persuasive-sounding and at the same time hard to pin down.

I'm more mad than I am with the standard BPS deconditioning stuff - at least they don't make any effort to cover up the essential psychologcal nature of their account.

 

[RogerBlack]

In principle, the culprit could be some unspecified brain structure whose responses to pain signals increase over time despite no change in the stimulus. However, there is no brain structure that has yet been found that behaves in this way, so the whole idea is pretty close to magical thinking

If you propose a physiological mechanism, and use that to explain your therapy to patients, you need to prove it's actually real.

Some of the symptoms on which the patients are focussing on are psuedo-reasonable if you look at them for several minutes. Proper reflection should show that the claims aren't valid.
For example, muscle pain is explained to the patient by deconditioning -> overuse -> muscle pain.

They do not accept there are major physiological problems.

The problem with this explanation is it's either an intentional lie, or a reflection of hideous carelessness lasting 30 years or more.

Deconditioning driven muscle pain requires the muscle to be exercised. It does not happen in unexercised muscles. It wholly does not explain muscle pain caused by an activity which the previous week was well tolerated.

If you carefully read the statements made by researchers, and the guidance materials, they vary between "these patients are hopelessly hypochodriac about symptoms of normal exercise and frightened and attributing symptoms of panic and sleep problems to disease" to "These are malingerers that I can't call malingerers".

http://forums.phoenixrising.me/inde...etil-gundro-brurberg.52906/page-4#post-877086 more in depth on the CBT guidelines.