Sleep apnea should not be exclusion criteria for ME/CFS

Dolphin

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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?).
White has written against the idea that there is one Functional Somatic Syndrome:

Here's a debate with Simon Wessely:
Br J Psychiatry. 2004 Aug;185:95-6.
There is only one functional somatic syndrome.
Wessely S, White PD.
Department of Psychological Medicine, GKT School of Medicine, 103 Denmark Hill, London SE5 8AF, UK. s.wessely@iop.kcl.ac.uk
Full free text at:
http://bjp.rcpsych.org/cgi/content/full/185/2/95
I think it may be a bit of a misuse of the term "heterogeneous" in medicine if one recommends the same treatment to everyone. One will have people of different weights/BMIs for most conditions for example but one wouldn't say they were heterogeneous.

The GET manuals e.g. in the PACE trial are the same for everyone. He doesn't want for example different programs for ME compared to other groups.
 

Enid

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Surely we have given up anything psychiatric - all their terms and names and mumbo jumbo - it simply is not so. They are dinosaurs now.
 
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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).
from paper said:
Hence, there were only six incident cases of chronic fatigue syndrome according to the CDC 1994 criteria,...
Also note, 36/15283=0.24% with CFS.

So basically, their results only indicate that a proportion people who suffer from CFS often get depressed at the same time, rather than depression leading to CFS.
They claim no difference between viral, non viral cohorts, but that is meaningless when you have only six incident cases.

I really don't like how they then precede to do misleading discussion...
 

lancelot

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Are you talking about patients only? The CDC certainly haven't unfortunately.
i'm talking about all gorvernmental agenicies including the CDC with reeves fired and more so NIH, BWG, AND fda. i don't see unger riding reeves now that everyone agrees it's physical. here job will be kept and lost by our pressure. don't worry, this lil' girl will do the right thing for her daddy, and i don't mean impotent reeves.

cheers! USA #1
 

Dolphin

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With reeves gone, the CDC certainly HAS!!! Do you wanna bet? USA #1
Jim Jones hasn't gone.
http://forums.aboutmecfs.org/showth...-(now-the-real-head-of-the-CDC-s-CFS-program-) has a collection of his views.
also
http://forums.aboutmecfs.org/showth...e-of-the-views-of-the-CDC-s-James-(Jim)-Jones

What treatments do you think the CDC will be recommending? I think it's going to be GET and CBT for the time being. Not sure they're going to drop early childhood trauma straightaway either.
 

lancelot

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Jim Jones hasn't gone. What treatments do you think the CDC will be recommending. I think it's going to be GET and CBT for the time being. Not sure they're going to drop early childhood trauma straightaway either.
jim jones is a nobody!!! he is unger's footrest! we are ready to go hyperspace and land onto weasel's face!
 

lancelot

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Jim Jones hasn't gone. What treatments do you think the CDC will be recommending. I think it's going to be GET and CBT for the time being. Not sure they're going to drop early childhood trauma straightaway either.
jim jones is a nobody!!! he is unger's footrest! we are ready to go hyperspace and land onto weasel's face!
 

Angela Kennedy

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Moderator: Angela, I have removed the quote for which Lancelot was suspended.
I'm sorry, but seriously Lancelot! Are you really trying to claim that there are no psychogenic explanations in the U.S. now for this illness (or others)? What's been done to Lyme patients? The 'Childhood trauma' faffle being propagated, the 'personality disorders' stuff only a few weeks ago discussed here? The continuing use of the Reeves criteria?
 

lancelot

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I'm sorry, but seriously Lancelot! Are you really trying to claim that there are no psychogenic explanations in the U.S. now for this illness (or others)?
that's not what i said nor claiming. i was only disagreeing with dolphin who thinks the new CFS-CDC will put out GET and CBT as treatments for CFS. I completely disagreed and gave my short explanation as to why-that the last psycho incompetent American doc was fired and out of the CFS-CDC program forever. you inferred too much from nothing. please read my post again.
 

Angela Kennedy

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that's not what i said nor claiming. i was only disagreeing with dolphin who thinks the new CFS-CDC will put out GET and CBT as treatments for CFS. I completely disagreed and gave my short explanation as to why-that the last psycho incompetent American doc was fired and out of the CFS-CDC program forever. you inferred too much from nothing. please read my post again.
Yeah. Right. Read your own posts again:

name one doc still doing that psycho crap. he be laughed out of america! take that rubbish across the pond~!
and this

In America and Canada we have thrown away the psycho crap a long time ago. how about you?
and this

i'm talking about all gorvernmental agenicies including the CDC with reeves fired and more so NIH, BWG, AND fda. i don't see unger riding reeves now that everyone agrees it's physical.
 

Angela Kennedy

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so you take BITS of what i said and try to infer something from it again? i'm confused, what is it that you're trying to infer? And are you stalking me? LOL!
What you have been saying makes no sense whatsoever. You seem to be trying to destabilise what was a sensible conversation on this thread, with some sort of "USA! USA!" cheerleading, ludicrous claims that psychs somehow get short shrift in the U.S. on psychogenic explanations for CFS, and now you are accusing me of stalking you, and trying to tell me black is blue.

But- I take it that you - contrary to your own words here - are NOW acknowledging psychogenic explanations for CFS are still happening in the US of A, and that North American patients are still suffering because of this.
 

Dolphin

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BTW, for what it's worth, I'm not British nor do I live in the UK. But I think people with ME/CFS anywhere in the world can be affected by "psychobabble" research which is done anywhere (perhaps more so if it's in English than in other languages which might not get propagated as much).

Also, for what it's worth, the Wessely et al (1996) study was published in the American Journal of Psychiatry.
 

Dolphin

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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".
Wessely et al may claim that accounted for the CFS symptoms by the choice of questionnaires and excluding fatigue but as oceanblue points out http://forums.aboutmecfs.org/showth...ria-for-ME-CFS&p=148087&viewfull=1#post148087 the CIS-R questionnaire is problematic for diagnosing psychiatric disorder in CFS even without fatigue.

As you say there may be problems with other categories of the CIS-R (and other questionnaires) also because of dysautonomia and inflammation.

I have read the paper now and can see no mention that the 8 CDC symptoms were excluded from CIS-R scores.

And with the HAD questionnaire, they did some calculations with a fatigue question and some without but didn't exclude any other questions:
Of the 36 subjects with chronic fatigue syndrome, 29
(80.6%) had probable and 17 (47.2%) had definite depression
according to the Hospital Anxiety and Depression
Scale subscale. These proportions fell to 16
(44.4%) and 10 (27.8%) when the fatigue question was
excluded. Twenty-four (66.7%) had probable and 19
(52.8%) had definite anxiety disorders.
 

Dolphin

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GHQ-12 questions

Apologies for dragging this thread somewhat off-topic.

Anyway, I thought I'd also post the questions for the GHQ-12 which Wessely et al said was not problematic for CFS in terms of diagnosing psychiatric disorders.

They said they used Likert scoring (as opposed to bimodal) with a total score of 4 or more equallying a case (of psychiatric disorder):

General Health Questionnaire (7): a well-validated questionname
measure of psychological symptoms. We used Likert scoring,
which follows a normal distribution in large samples. Traditional
scoring was used, in which “caseness” is a score of 4 or above (8).
Those scoring above this cutoff are sometimes called “General Health
Q uestionnaire cases,” but we prefer to use the term “subjects with
psychiatric disorder (General Health Questionnaire).”
One could score three alone from this question:
7. been able to enjoy your normal day to day activities?
3 points for: much less than usual
so it appears one more point from somewhere e.g. difficulty concentrating and one was a case. There is a chance they were not clear themselves which has misled me.


http://chipts.cch.ucla.edu/assessment/IB/List_Scales/General Health Questionnaire.htm

We want to know how your health has been in general over the last few weeks. Please read the questions below and each of the four possible answers. Circle the response that best applies to you. Thank you for answering all the questions.


Have you recently:


1. been able to concentrate on what you’re doing?
0. better than usual

1. same as usual

2. ess than usual

3. much less than usual

2. lost much sleep over worry?
0. not at all

1. no more than usual

2. rather more than usual

3. much more than usual


3. felt that you are playing a useful part in things?
0. more so than usual

1. same as usual

2. less so than usual

3. much less than usual


4. felt capable of making decisions about things?0. more so than usual

1. same as usual

2. less so than usual

3. much less than usual


5. felt constantly under strain?0. not at all

1. no more than usual

2. rather more than usual

3. much more than usual


6. felt you couldn’t overcome your difficulties?0. not at all

1. no more than usual

2. rather more than usual

3. much more than usual


7. been able to enjoy your normal day to day activities?0. more so than usual

1. same as usual

2. less so than usual

3. much less than usual


8. been able to face up to your problems?0. more so than usual

1. same as usual

2. less so than usual

3. much less than usual


9. been feeling unhappy or depressed?0. not at all

1. no more than usual

2. rather more than usual

3. much more than usual


10. been losing confidence in yourself?0. not at all

1. no more than usual

2. rather more than usual

3. much more than usual


11. been thinking of yourself as a worthless person?0. not at all

1. no more than usual

2. rather more than usual

3. much more than usual


12. been feeling reasonably happy, all things considered?0. not at all

1. no more than usual

2. rather more than usual

3. much more than usual
 

biophile

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Reply to Angela Kennedy

Sorry to be picking your brains- but any chance of a specific reference for [Chalder etc on factors of increased psychiatric comorbidity in ME/CFS such as response to illness and psychogenic dismissal]? It would be interesting to see Chalder or anyone even address this possibility regarding direction of causation.
I must have pulled the Chalder quote from this 2007 presentation:

Slide 22: "Depression could be response to a physical illness controlled studies show lower rates of psychiatric disorder in medical controls."

Slide 24: "CFS patients have more psychological distress than medical controls making it unlikely that the distress is secondary to the experience of having a chronic illness."

Also see this 2008 presentation by Hotopf: Page 17 of the PDF "Current psychiatric disorder in CFS compared with medical controls" lists the results, notice how CFS is generally much higher.

This 1991 paper lists some earlier comparisons: "Postviral fatigue syndrome and psychiatry"

There is a lot of other literature on psychiatric pre/co/post-morbidity and CFS, too much to wade through at the moment to give a referenced summary on the speculation regarding the direction of causation (I did find the Discussion section of a study which indicates that while rates of depression in CFS is higher than some other medical diseases, the predictors of depression are similar).

From memory, biopsychosocialists like Chalder, proud of their transcendence from the mind-body problem, do acknowledge that psychogenic dismissal is unhelpful to patients, that CFS is not imaginary and not "all in the mind" but is "real" and also physical/bodily (in a "functional" sense), yet they seem fixated on "abnormal" illness beliefs or "maladaptive" cognitions and behaviours as the primary issue in CFS. Increased psychiatric comorbidity would probably be largely attributed to supposed overlap and maladaptive cognitions more than a "normal" response to illness and lack of support etc.

The claimed (yet disputed) association between prior psychiatric disorder and later CFS onset could be an artifact of poor methodology, or a probable contributory factor (like with heart disease), or an early manifestation of CFS pathology which is mistaken for a psychiatric diagnosis (a similar relationship has been observed for depression and Parkinson's disease).

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.
I agree. There is an obvious disagreement between what patients experience/discover as an appropriate response to CFS and what these psychiatrists speculate should be a "normal" response to CFS. There are insulations that we are behaving "abnormally" to ordinary infections and stressors. Doesn't the DSM generally stay neutral on etiology (except where psychogenic judgements on physical sympoms are part of the diagnosis)? I will have to check out those names and literature later.

ME/CFS involves a massive symptom burden on par with severe medical diseases. As I'm sure you only know too well, ME/CFS has a profound effect on patients' lives, ranging from struggling to remain employed, to lifestyle falling apart, to being effectively paralysed with suffering and unable to look after oneself. On top of that, one must face frequent dismissal and derision, while patients' criticism of how they are treated is intepreted as further evidence for their (alleged) neuroticism, intransigence, lack of insight, disgust for mental patients, etc. Medical care is not only lacking but often purposely withheld because of a CFS diagnosis. If researchers have trouble understanding or believing the nature and severity of such patient experience, then it is no surprise that they fail to properly consider the influence such experience can have on the mental health of patients.

Papers by Acheson and Dowestt suggest to me that non-causal emotional symptoms including irritability and depression (of suspected organic origin) were a commonly reported part of ME as well, at least in the early stages, but were obviously not the same as a primary psychiatric diagnosis of major depression. I still suspect that disturbed homeostasis and the neuroimmune-like pathology of ME/CFS could amplify the psychological impact of the above mentioned pressures. I like the influenza, sleep deprivation, and hangover comparisons because these can make otherwise healthy people appear irritable and depressed, while ME/CFS can feel like all 3 at once for decades. Biopsychosocial-naut psychiatrists are welcome to emulate all the above for themselves and see how normally they cope.

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.
I agree. It was a very smart move by the WPI/NCI/CC, both scientifically and politically, to use the Canadian criteria in their 2009 Science paper on XMRV, it has pushed the issue into the spotlight.