Sleep apnea should not be exclusion criteria for ME/CFS

biophile

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Dolphin says:

Yes, he is very selective. He quotes a study involving Wessely and has a graph where the more of the 9 CDC criteria (fatigue plus the usual 8), the higher the score on some psychiatric scale. Two things to note on this: the graph starts at 0, 1, 2, etc - if it was just a sample of people who satisfy the CDC criteria it would start at 5.

Also, the psychiatric scale used makes it a bit meaningless. I can't remember all the details but some physical symptoms are counted as psychiatric symptoms e.g. fatigue, sleep disturbance, cognitive problems, etc. So it's not surprising that there is a correlation between the number of CDC symptoms and the average score on this psychiatric scale.

It shows how these psychiatrists have to be watched like hawks.

He also has a cheek making points like the CDC-1994 lacks specificity when the Oxford criteria, the criteria he chose for the PACE Trial etc, is even worse in that area. So he's nit-picking while the alternative he has is even worse.
Good points Dolphin.

White seems to justify his position because the 4 symptom requirement of the CDC-1994 criteria is an artificial and arbitrary cut off point which apparently does not represent a bona fide boundary for a certain CFS diagnosis. That is probably true, and I understand his reasoning, but like you said the Oxford criteria isn't any better, it actually worsens the heterogeneity. On the other hand, perhaps he doesn't see "chronic fatigue" as fundamentally heterogeneous, in other words, he assumes this sort of functional fatigue is roughly the same end-point regardless of what led to it, similar to Wessely's speculation that CFS model of fatigue also applies to RA, MS, HIV and cancer patients.

Also, it is interesting to note that other studies by Kato et al suggest that there is a general association between physical symptoms and psychiatric comorbidity irrespective of whether the symptoms are medically "explained" or not, unsurprisingly not mentioned by White in that video or probably anywhere. The association may be somewhat higher for medically "unexplained" physical symptoms, but again this isn't surprising because of the diagnostic issues involved.

He may be "fear-avoidant" when it comes to testing CBT/GET hypotheses on Canadian criteria patients, knowing it wouldn't turn out well (but for different reasons we would speculate on) because he may assume those Canadian criteria patients are too wrapped up in their own vicious cycle of somatisation, avoidance, deconditioning, psychiatric comorbidity, lack of insight etc to be helped by the enlightened and compassionate "cognitive behavioural model". Obviously he also doesn't like the Canadian criteria because of possible neurological signs and allegedly confusing symptoms like "emotional overload" which he claims as a psychiatrist he can't define.

The PACE and FINE trials used the London ME criteria, I don't know how that "subgroup" will turn out since the Oxford criteria was the first inclusion criteria which, may exclude some Canadian criteria patients. But notice how the already published FINE trial never mentioned separate results for the London ME criteria "subgroup", which I find a little suspicious.

Snow Leopard says:

It doesn't work in Firefox either. But I think I will be more content if I don't watch it, so I won't bother installing IE.
It worked for me in FireFox but it prompted a plugin installation first.
 

Angela Kennedy

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There's also the issue of 'psychiatric co-morbidity' in this sort of literature in which (a) as Dolphin has already mentioned, physical symptoms are arbitrarily defined as 'psychiatric' (this happens with the diagnosis of somatization also), which exhibits circular reasoning, and (b) responses to impact of illness (especially iatrogenic distress caused by psychogenic explanations of 'MUS', which engender psychogenic dismissal and character denigration and the fall-out for patients from all that) are implied or downright claimed sometimes as causative of illness.
 
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Yes, he is very selective. He quotes a study involving Wessely and has a graph where the more of the 9 CDC criteria (fatigue plus the usual 8), the higher the score on some psychiatric scale. Two things to note on this: the graph starts at 0, 1, 2, etc - if it was just a sample of people who satisfy the CDC criteria it would start at 5.

Also, the psychiatric scale used makes it a bit meaningless. I can't remember all the details but some physical symptoms are counted as psychiatric symptoms e.g. fatigue, sleep disturbance, cognitive problems, etc. So it's not surprising that there is a correlation between the number of CDC symptoms and the average score on this psychiatric scale.
Do you have a link to this Wessely paper? thanks

Well, that video does see Peter White laying out his stall pretty clearly. he doesn't seem interested in the difference between CFS and Chronic Fatgiue more generally. And he neglected to mention that the huge Sullivan twin study he uses for many of his assertions was a postal affair and didn't involve medical examination, which might also explain the 2.5% recorded prevalence rate. Even when the CDC medically evaluate people with a similar CFS-like illness according to screening questionnaire, most of them have medical or pyschological exclusions that rule out CFS as a diagnosis. Dodgy data, dodgy conculsions.
 

Dolphin

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Dolphin

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Good points Dolphin.

White seems to justify his position because the 4 symptom requirement of the CDC-1994 criteria is an artificial and arbitrary cut off point which apparently does not represent a bona fide boundary for a certain CFS diagnosis. That is probably true, and I understand his reasoning, but like you said the Oxford criteria isn't any better, it actually worsens the heterogeneity. On the other hand, perhaps he doesn't see "chronic fatigue" as fundamentally heterogeneous, in other words, he assumes this sort of functional fatigue is roughly the same end-point regardless of what led to it, similar to Wessely's speculation that CFS model of fatigue also applies to RA, MS, HIV and cancer patients.
Well, in a letter criticising a piece on the RSM conference in the MEA magazine (don't think they should have published it, but that's old news at this stage), he said,
"As just one example, both Dr. Jonathan Kerr and I believe that CFS/ME is heterogeous as in deed does Dr. Lenny Jason"
Similarly,
Replication of an empirical approach to delineate the heterogeneity of chronic unexplained fatigue.
Popul Health Metr. 2009 Oct 5;7:17.
Aslakson E, Vollmer-Conna U, Reeves WC, White PD.
Centers for Disease Control and Prevention, Atlanta, Georgia, USA. wcr1@cdc.gov.

Conclusion: These data support the hypothesis that chronic medically unexplained fatigue is heterogeneous and can be delineated into discrete endophenotypes that can be replicated.
I think one could find lots more examples if one tries.

So when it suits him I think he says it's heterogeneous; when it doesn't suit him e.g. with regard to treatment, he says it's homogenous and that everyone should get the same treatment (graded exercise therapy) (and he seems to be more into compulsion than most e.g. for insurance payments).

He may be "fear-avoidant" when it comes to testing CBT/GET hypotheses on Canadian criteria patients, knowing it wouldn't turn out well (but for different reasons we would speculate on) because he may assume those Canadian criteria patients are too wrapped up in their own vicious cycle of somatisation, avoidance, deconditioning, psychiatric comorbidity, lack of insight etc to be helped by the enlightened and compassionate "cognitive behavioural model".
Who knows how his mind works. One patient who has followed the literature for a long time advised not to try to work out how he thinks. Judging by the some of the strange ways he thinks, that may sometimes be good advice - it's maybe like spending a lot of time thinking why somebody says 2 plus 2 equals 5!? I'm not saying it's never worthwhile to work out where people are coming from. It's just that his thinking seems so convoluted sometimes.
 

Dolphin

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There's also the issue of 'psychiatric co-morbidity' in this sort of literature in which (a) as Dolphin has already mentioned, physical symptoms are arbitrarily defined as 'psychiatric' (this happens with the diagnosis of somatization also), which exhibits circular reasoning, and (b) responses to impact of illness (especially iatrogenic distress caused by psychogenic explanations of 'MUS', which engender psychogenic dismissal and character denigration and the fall-out for patients from all that) are implied or downright claimed sometimes as causative of illness.
Good points, Angela.
Another circular argument in a way - the stigmatised may show up worse because they are stigmatised and not treated well etc. It may not help to stigmatise them more.
 

Dolphin

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Well, that video does see Peter White laying out his stall pretty clearly. he doesn't seem interested in the difference between CFS and Chronic Fatgiue more generally. And he neglected to mention that the huge Sullivan twin study he uses for many of his assertions was a postal affair and didn't involve medical examination, which might also explain the 2.5% recorded prevalence rate. Even when the CDC medically evaluate people with a similar CFS-like illness according to screening questionnaire, most of them have medical or pyschological exclusions that rule out CFS as a diagnosis. Dodgy data, dodgy conculsions.
Good points.

And as I said in a message just posted, some of the time he is interested and says CFS etc. is heterogeneous. If one collects enough things that he says, one can see contradictions, "overstatements", simplifications, misleading information, etc.
 
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www.kcl.ac.uk/content/1/c6/01/47/68/PDF-53.pdf
Looks like the sort of paper that should have been replied to (but doesn't appear to have been judging by the PubMed record).
Thanks for the paper: I have a copy of it somewhere but never really got to grips with it
Also, the psychiatric scale used makes it a bit meaningless. I can't remember all the details but some physical symptoms are counted as psychiatric symptoms e.g. fatigue, sleep disturbance, cognitive problems, etc.
Does the paper itself say which symptoms are counted as psychiatric vs physical? As you say, counting CDC symptoms as psychiatric would make the graphed correlation meaningless.
 
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And as I said in a message just posted, some of the time he is interested and says CFS etc. is heterogeneous. If one collects enough thinks that he says, one can see contradictions, "overstatements", simplifications, misleading information, etc.
Id agree. My impression was that his talk sounded very convincing, so long as you weren't familiar with the details of the research he cited - which often didn't really support what he said.
 

Dolphin

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I might get a chance to read the paper in the next day or two.

Here's the questionnaire used. I started spacing it out but gave up. Anyone it's available at the link.

http://www.statistics.gov.uk/downloads/theme_health/PMA-
AdultFollowup.pdf

Common mental disorders in the week preceding
interview were assessed using the revised version of
the Clinical Interview Schedule (CIS-R) (Lewis et
al, 1992). The CIS-R can provide data on the
prevalence of 14 symptoms, six ICD-10 disorders
(depressive episode, phobias, generalised anxiety,
panic disorder, obsessive compulsive disorder,
mixed anxiety and depression), and the
distribution of total CIS-R scores, which give an
indication of severity of symptoms.

The CIS-R comprises 14 sections, each covering a
particular area of symptoms as follows:

. Somatic symptoms.
. Fatigue.
. Concentration and forgetfulness.
. Sleep problems.
. Irritability.
. Worry about physical health.
. Depression.
. Depressive ideas.
. Worry.
. Anxiety.
. Phobias.
. Panic.
. Compulsions.
. Obsessions.

Each section begins with a number of mandatory
filter questions. They establish the existence of a
particular symptom in the past month. A positive
response leads to a more detailed assessment of the
symptom in the past week: frequency, duration,
severity, and time since onset. Answers to these
questions determine the informant's score on each
section. Possible scores range from zero to 4 on
each section (except the section on depressive ideas,
which has a maximum score of 5). The example in
Figure 1.2, shows the elements that contribute to
the score for Anxiety. Any combination of the
elements produce the section score. The elements
that contribute to the scores for each of the
symptoms can be found in Appendix A of the
report.

---

The assessment of common mental disorder and alcohol problems

Appendix A
A1 Assessment of common mental disorder using the CIS-R

1. Calculation of CIS-R symptom scores

Calculation of symptom score for Somatic Symptoms

Score one for each of:
Noticed ache or pain/discomfort for four days or more in past seven days

Ache or pain/discomfort lasted more than three hours on any day in past week/on that day

Ache or pain/discomfort has been very unpleasant in past week

Ache or pain/discomfort has bothered you when you were doing something interesting in past week

Calculation of symptom score for Fatigue

Score one for each of:
Felt tired/lacking in energy for four days or more in past seven days

Felt tired for more than three hours in total on any day in past week

Felt so tired/lacking in energy that you've had to push yourself to get things done on at least one occasion during past week

Felt tired/lacking in energy when doing things you enjoy or used to enjoy at least once during past week

Calculation of symptom score for Concentration and forgetfulness
Score one for each of:
Noticed problems with concentration/memory for four days or more in past week

Could not always concentrate on a TV programme, read a newspaper article or talk to
someone without mind wandering in past week

Problems with concentration actually stopped you from getting on with things you used to do or would like to do

Forgot something important in past seven days

Calculation of symptom score for Sleep Problems

Score one for each of:
Had problems with sleep for four nights or more out of past seven nights

Spent at least 1/4 hour trying to get to sleep on the night with least sleep in the past week

Spent three or more hours trying to get to sleep on four nights or more in past week

Slept for at least 1/4 hour longer than usual sleeping on the night you slept the longest in the past week

Slept for more than three hours longer than usual on four nights or more in past week

Calculation of symptom score for Irritability Score one for each of:

Felt irritable or short tempered/angry on four days or more

Felt irritable or short tempered/angry for more than one hour on any day in past week

Felt so irritable or short tempered/angry that you wanted to shout at someone in past week (even if you hadn't actually shouted)

Had arguments, rows or quarrels or lost your temper with someone in past seven days and felt it was unjustified on at least one occasion

Calculation of symptom score for Worry about Physical Health

Score one for each of:
Worried about physical health/serious physical illness on four days or more in past seven days

Felt that you had been worrying too much, in
view of actual health
Worrying had been very unpleasant in past
week
Not able to take mind off health worries at least
once by doing something else in past week
Calculation of symptom score for Depression
Score one for each of:
Unable to enjoy or take an interest in things as
much as usual in past week
Felt sad, miserable or depressed/unable to enjoy
or take an interest in things on four days or
more in past week
Felt sad, miserable or depressed/unable to enjoy
or take an interest in things for more than three
hours in total on any day in past week
When sad, miserable or depressed did not
become happier when something nice
happened, or when in company
Calculation of symptom score for Depressive ideas
Score one for each of:
Felt guilty or blamed yourself when things went
wrong when it hasn't been your fault at least
once in past seven days
Felt that you are not as good as other people
during past week
Felt hopeless, for instance about your future,
during past seven days
Felt that life isn't worth living in past week
Thought of killing yourself in past week
Calculation of symptom score for Worry
Score one for each of:
Been worrying about things other than physical
health on four or more days out of past seven
days
Have been worrying too much in view of your
circumstances
Worrying has been very unpleasant in past week
Have worried for more than three hours in total
on any of past seven days
Calculation of symptom score for Anxiety
Score one for each of:
Felt generally anxious/nervous/tense on four or
more of past seven days
Anxiety/nervousness/tension has been very
unpleasant in past week
When anxious/nervous/tense, have had one or
more of following symptoms:
heart racing or pounding
hands sweating or shaking
feeling dizzy
difficulty getting your breath
butterflies in your stomach
dry mouth
nausea or feeling as though you wanted to
vomit
Felt anxious/nervous/tense for more than three
hours in total in any one of past seven days
Calculation of symptom score for Phobias
Score one for each of:
Felt nervous/anxious about (situation/thing)
four or more times in past seven days
On occasions when felt anxious/nervous/tense,
had one or more of following symptoms:
heart racing or pounding
hands sweating or shaking
feeling dizzy
difficulty getting your breath
butterflies in your stomach
dry mouth
nausea or feeling as though you wanted to
vomit
Avoided situation or thing because it would
have made you anxious/nervous/tense once or
more in past seven days
Calculation of symptom score for Panic
Score one for each of:
Anxiety or tension got so bad you got in a panic
(eg felt that you might collapse or lose control
unless you did something about it) once or
more in past week
Feelings of panic have been very unpleasant or
unbearable in past week
This panic/worst of these panics lasted longer
than 10 minutes
Calculation of symptom score for Compulsions
Score one for each of:
Found yourself doing things over again (that
you had already done) on four days or more in
last week
Have tried to stop repeating behaviour/doing
these things over again during past week
Repeating behaviour/doing these things over
again made you upset or annoyed with yourself
in past week
Repeated behaviour three or more times during
past week
Calculation of symptom score for Obsessions
Score one for each of:
Unpleasant thoughts or ideas kept coming into
your mind on four days or more in last week
Tried to stop thinking any of these thoughts in
past week
Became upset or annoyed with yourself when
you have had these thoughts in past week
Longest episode of having such thoughts was +
hour or longer

2. Calculating total CIS-R scores
The total CIS-R score used in this report was
obtained by summing the symptom scores
described above. This total score reflects the overall
severity of symptoms of common mental disorders
(or neurotic symptoms) and can range from zero
to 57. A score of 12 or above is considered
indicative of common mental disorder. The total
scores are further grouped into four groups:
0-5
6-11
12-17
18 and over
 

Sean

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...and (b) responses to impact of illness (especially iatrogenic distress caused by psychogenic explanations of 'MUS', which engender psychogenic dismissal and character denigration and the fall-out for patients from all that) are implied or downright claimed sometimes as causative of illness.
If only the psychs would pay more attention to this aspect - the secondary, iatrogenic, and contingent (ie totally unnecessary) additional psycho-social and economic burdens placed on patients with this disease by the way it is viewed and treated by the medical profession (primarily psychiatry), and hence broader society.

But of course doing so will expose just how unscientifically and unethically they have been treating us, so they will not be lining up to investigate themselves so closely.

(There are some good psychs, and we should support them, but they are in a small minority right now within the profession.)
 

Hope123

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The "toxic feeling" in the AM may be related to cytokine disruptions. Ben Natelson had a paper out recently showing at least IL-10 levels are out of whack timing-wise in sick subjects compared to normal. Also, some autoimmune illnessess, like rheumatoid arthritis, are known to be worse in the morning -- in fact, it is part of its definition.

Also, if sleep apnea in ME/CFS is centrally related rather than obstructive, it might be connected to poor brain control of essential functions -- i.e. poor respiratory control. Wonder if this will be shown to be connected to poor blood pressure control -- i.e. POTS/ NMH??
 
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Here's the questionnaire used. Anyone it's available at the link.
Thanks for the CIS-R. Dolphin, you're brilliant at tracking these things down, I'd tried and failed to find it.
. Somatic symptoms.
. Fatigue.
. Concentration and forgetfulness.
. Sleep problems.
. Irritability.
. Worry about physical health.
Since 'somatic symptoms' refers to pain and 'worry about physical health' might be expected to correlate with number of symptoms (if we asssume, for one crazy moment, CFS has an organic basis) that graph showing CIS-R correlating with number of CDC symptoms is largely meaninless, as you say.
 

biophile

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Catch-22 of defining CFS

biophile says:

Also, it is interesting to note that other studies by Kato et al suggest that there is a general association between physical symptoms and psychiatric comorbidity irrespective of whether the symptoms are medically "explained" or not [...]
Oops I meant Kisely, see [Kisely S psychiatric physical] @ PubMed (brackets removed). I'm not sure how well they compensated for physical symptoms counting towards a psychiatric diagnosis, but just like HPA axis abnormalities and supposed relationships to self-reported psychological stress this is just another example of an area in research which is used to selectively support psychosomatic interpretations of CFS despite also being observed in classical organic diseases as well.

Angela Kennedy says:

There's also the issue of 'psychiatric co-morbidity' in this sort of literature in which (a) as Dolphin has already mentioned, physical symptoms are arbitrarily defined as 'psychiatric' (this happens with the diagnosis of somatization also), which exhibits circular reasoning, and (b) responses to impact of illness (especially iatrogenic distress caused by psychogenic explanations of 'MUS', which engender psychogenic dismissal and character denigration and the fall-out for patients from all that) are implied or downright claimed sometimes as causative of illness.
Yes, diagnostic issues such as these are a fundamental concern and need to be monitored whenever elevated psychiatric comorbidity is claimed. You probably have already seen the article on (a) authored by Jason et al 1997.

Some researchers like Chalder claim that (b) is unlikely to account for the high rates of detected psychiatric comorbidity and psychological distress in CFS because these are lower in other patients with different diseases used as "medical controls", but I would strongly question what kind of disease these patients had (ie do they have the same type and severity and impact of symptoms as ME/CFS?) and what situation those controls are in (eg are they facing constant psychogenic dismissal, life falling apart, forced to push through symptoms just to survive, lack of support and medical care etc). When appropriate instruments are used, a 25-35% rate of depression in CFS (1/3 seems like a common finding when using SCID) is not that much higher than the often cited "25%" for general medical disorder, not to mention the rate is apparently even higher for some inflammatory and neurological diseases anyway, of which ME/CFS is suspected of being! Also, I'm not sure where psychiatrists stand on the accuracy of a psychiatric diagnosis and whether such a diagnosis definitely means the person has a "maladaptation" as opposed to a normal reaction to negative circumstances.

Dolphin says:

www.kcl.ac.uk/content/1/c6/01/47/68/PDF-53.pdf : Psychological symptoms, somatic symptoms, and psychiatric disorder in chronic fatigue and chronic fatigue syndrome: a prospective study in the primary care setting.

http://www.statistics.gov.uk/downloads/theme_health/PMA-AdultFollowup.pdf :

Common mental disorders in the week preceding interview were assessed using the revised version of the Clinical Interview Schedule (CIS-R) (Lewis et al, 1992). The CIS-R can provide data on the prevalence of 14 symptoms, six ICD-10 disorders (depressive episode, phobias, generalised anxiety, panic disorder, obsessive compulsive disorder, mixed anxiety and depression), and the distribution of total CIS-R scores, which give an indication of severity of symptoms. The CIS-R comprises 14 sections, each covering a particular area of symptoms as follows

Somatic symptoms.
Fatigue.
Concentration and forgetfulness.
Sleep problems.
Irritability.
Worry about physical health.
Depression.
Depressive ideas.
Worry.
Anxiety.
Phobias.
Panic.
Compulsions.
Obsessions.

[...]
Wessely et al claim to have compensated for physical symptoms inappropriately counting towards psychiatric disorder. In the Discussion section: "We feel that this close association remains an inevitable consequence of the overlap between the criteria used to construct psychiatric diagnoses and those for chronic fatigue syndrome. This remained true even though we modified the standardized interview to exclude fatigue and used questionnaires that avoided the somatic symptoms associated with psychiatric disorder and chronic fatigue syndrome."

For example, under the Results section, rates of depression nearly halved when this was taken into account. However if only the 8 "CDC symptoms" are being accounted for then it is possible that "non-CDC symptoms" are still causing falsely elevated estimations of psychiatric disorder. This may be especially true for symptoms of dysautonomia and inflammation leading to false attribution to "anxiety" and "somatisation".

Dolphin says:

I think one could find lots more examples if one tries.

So when it suits him I think he says it's heterogeneous; when it doesn't suit him e.g. with regard to treatment, he says it's homogenous and that everyone should get the same treatment (graded exercise therapy) (and he seems to be more into compulsion than most e.g. for insurance payments).
What did you mean by "he seems to be more into compulsion than most"?

Anyway, yes, it appears he supports broad heterogeneous criteria with an attempt to establish subgroups, in the case of the study you refer to above, "The ill classes were differentiated by multiple symptoms, obesity, metabolic strain, depressed mood, and sleep problems." White may believe that any heterogeneity in the fatigue will be compensated for by the flexibility of the CBT/GET therapists adjusting to individual circumstance.

I also wonder if something similar will be attempted for the issue of whether CFS/FMS/IBS etc are all part of the same general syndrome, researchers capturing all supposedly similar syndromes within a wide heterogeneous criteria (eg Fink's "bodily distress disorder") and then create new "subgroups" based on statistical analysis of individual symptoms rather than current definitions of CFS vs FMS vs IBS etc (eg like this attempt by Kato et al?).

The Sullivan et al 2005 study (telephone data only?) concludes that a "CFS-like illness" exists but questions the validity of CDC-1994 criteria and the requirement of other symptoms. Doing a search for ["chronic fatigue" Sullivan] and ["chronic fatigue" Kato] @ PubMed (brackets removed) reveals similar research. As oceanblue pointed out, there are major methodological limitations when the researchers do not conduct a clinical evaluation/confirmation of the participants' health status. Lots of these large studies only gather telephone data and maybe some previous medical records (which arguably may be patchy and unreliable). A large proportion of people reporting "CFS-like" symptoms have exclusionary conditions if clinically examined, so reporting CFS-like symptoms isn't a good indicator of what the patient has. Clinical examination is ideal but I doubt it will solve the problem if the examination is based on flawed measurements and a CDC-1994 criteria which other research (think of Jason et al) also finds flaws in.

This 2009 international study by Hickie et al concludes that "the construct validity of chronic fatigue and chronic fatigue syndrome is supported by an empirically derived factor structure from existing international datasets" (the five-factor model of the key symptom domains: 'musculoskeletal pain/fatigue', 'neurocognitive difficulties', 'inflammation', 'sleep disturbance/fatigue' and 'mood disturbance'). A recent reviews states: "There are currently five case definitions of CFS; however, the most prominent and widely used of these definitions is the 1994 Centre for Disease Control and Prevention Case Definitions. However, the pre-eminence of this definition over the others has never been substantiated and it has been widely criticized for its lack of specificity. Furthermore, none of the above case definitions have produced evidence to demonstrate their accuracy or precision at defining cases of CFS."

We know CFS exists but we don't have a universally accepted and validated definition of CFS, so after 25 years we are still left with massive problems with diagnosis and research. ME got swallowed up by CFS, and now both are being swallowed up by "idiopathic/unexplained chronic fatigue" and "chronic unwellness". We think of ME/CFS as having little do with these but in some other studies researchers are having difficulty reliably distinguishing the two or cannot find major distinctive differences between the two, at least when using Oxford 1991 and CDC-1994 criteria anyway. There's a catch-22 between having a reliable definition of CFS vs knowing reliable characteristics of CFS. But there are many promising leads, like the pathology of PEM etc which should help steer us in the right direction.

The CDC's 1988 and 1994 criteria were never based on reliable empirical data (people refer to them as the "good old boys sitting around a table" criteria or whatever). As I understand it the CDC's 2005 Reeves definition is not an empirical redesign of the CFS criteria but merely uses empirical scales to "quantify" the already flawed CDC-1994 criteria, which somehow it makes it even worse!

We know from Jason et al that "variability in diagnostic criteria for CFS may result in substantial differences in patterns of symptoms and disability" and that the Canadian criteria does a better job at "selecting cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms" (which was its intended purpose and violates Wessely's/White's assumptions about "higher symptom count = higher psychiatric comorbidity" in ME/CFS). The Canadian criteria was designed with more clinical experience but there is very limited research on it and it has not had a chance to prove itself. Jason et al 2010 have attempt to improve on it with "The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition".
 

Angela Kennedy

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Hiya biophile,

Thanks for your latest response here which I found very useful.

Sorry to be picking your brains- but any chance of a specific reference for this below? It would be interesting to see Chalder or anyone even address this possibility regarding direction of causation.

Some researchers like Chalder claim that (b) [responses to disabling illness and its effects, and psychogenic dismissal in ME/CFS] is unlikely to account for the high rates of detected psychiatric comorbidity and psychological distress in CFS because these are lower in other patients with different diseases used as "medical controls"
Your points in objection to this are spot on.

Re your comment here:

Also, I'm not sure where psychiatrists stand on the accuracy of a psychiatric diagnosis and whether such a diagnosis definitely means the person has a "maladaptation" as opposed to a normal reaction to negative circumstances.
I think this is an important problem, and I feel more and more that how ME/CFS has been treated has highlighted some terrible problems in how psychiatrists construct people as psychiatrically ill based on ideological interpretations of human responses per se. ME/CFS has become almost exemplary of psychiatry's problems in this respect. Kirk and Kutchin's 'making us crazy' and Paula Caplan's 'They say you're crazy' are both useful in looking critically at DSM constructions in particular- you may already be aware of them.

Re your comment:

We know from Jason et al that "variability in diagnostic criteria for CFS may result in substantial differences in patterns of symptoms and disability" and that the Canadian criteria does a better job at "selecting cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms" (which was its intended purpose and violates Wessely's/White's assumptions about "higher symptom count = higher psychiatric comorbidity" in ME/CFS). The Canadian criteria was designed with more clinical experience but there is very limited research on it and it has not had a chance to prove itself. Jason et al 2010 have attempt to improve on it with "The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition".
I think this is a key issue. All research claiming to be about 'CFS' since 2003 should be including a discussion about different criteria and at least acknowledging Carruthers et al and now Jason et al's revision, in a 'limitations of study' section. I've already started responding to articles on 'CFS' stating words to this effect. Whether they'll take any notice, who knows (shrugs and rolls eyes!)

At least we got that from Switzer et al. Flawed as that paper was, their acknowledgement, though confused and problematic, has allowed the issue to be discussed I think.
 

Dolphin

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What did you mean by "he seems to be more into compulsion than most e.g. for insurance payments"?
When working for insurance companies, from the few examples I've seen, he generally suggests people have CBT and/or GET before they will be given a payment. In at least one case, the person had already done them before and he was still insisting.

So compulsion to try treatments (which he deems to be safe and effective). In a lot of medicine outside of psychiatry e.g. they won't force you to have an operation or take a particular drug even though they may think it's the best thing for you. Similarly in the CFS area, a lot of doctors may think GET or CBT based on GET may help but a lot would not make GET or CBT based on GET compulsory (if you attended them separately from say on the NHS e.g. a US doctor or whatever).
 

Angela Kennedy

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When working for insurance companies, from the few examples I've seen, he generally suggests people have CBT and/or GET before they will be given a payment. In at least one case, the person had already done them before and he was still insisting.

So compulsion to try treatments (which he deems to be safe and effective). In a lot of medicine outside of psychiatry e.g. they won't force you to have an operation or take a particular drug even though they may think it's the best thing for you.
Sorry to pick your brains on this Dolphin also (!) Do you have any examples of this? That would be very useful.
 

Dolphin

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Sorry to pick your brains on this Dolphin also (!) Do you have any examples of this? That would be very useful.
People have discussed this on a yahoogroup I'm on and then a couple of people have written to me separately from that. They include recent cases. I don't know has Margaret Williams has highlighted any of them. I was thinking of maybe waiting a while to ask permission to highlight some as I got the impression people were nervous as they didn't want their claims affected.