Snow Leopard
Hibernating
- Messages
- 5,902
- Location
- South Australia
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. 
Sleep apnea should not be exclusion criteria for ME/CFS
- Thread starter Hope123
- Start date
biophile
Places I'd rather be.
- Messages
- 8,977
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.
It worked for me in FireFox but it prompted a plugin installation first.
Angela Kennedy
Senior Member
- Messages
- 1,026
- Location
- Essex, UK
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.
Thanks - works in IE but not Firefox. So I will gird my loins and get stuck in.
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.
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).
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,
Similarly,
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).
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.
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.
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.
Thanks for the paper: I have a copy of it somewhere but never really got to grips with it
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.
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.
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
Senior Member
- Messages
- 1,266
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??
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??
Thanks for the CIS-R. Dolphin, you're brilliant at tracking these things down, I'd tried and failed to find it.
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
Places I'd rather be.
- Messages
- 8,977
Catch-22 of defining CFS
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.
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.
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".
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".
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.
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.
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".
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
Senior Member
- Messages
- 1,026
- Location
- Essex, UK
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.
Your points in objection to this are spot on.
Re your comment here:
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:
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.
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.
Your points in objection to this are spot on.
Re your comment here:
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:
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.
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
Senior Member
- Messages
- 1,026
- Location
- Essex, UK
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.