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Cognitive testing causes mental exhaustion lasting days
Simon McGrath takes a brief look at a recent paper that reveals some of the most powerful evidence of cognitive problems in people with ME/CFS to date...
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CDC:Coping Styles in Chronic Fatigue Syndrome: Findings from a Population-Based Study

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 4, 2012.

  1. Dolphin

    Dolphin Senior Member

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    Afraid don't have any info on this but thought I'd start a thread. I'd imagine it uses the (so-called) empiric criteria (Reeves et al., 2005) so have little confidence its findings will be useful.

    ------
  2. Snow Leopard

    Snow Leopard Senior Member

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    Is there a direct link? A search reveals their original 2006 paper.

    There have been a few studies on coping strategies over the years. With equivocal results. The following study for example only found a difference in the use of social support to predict clinical outcomes. http://onlinelibrary.wiley.com/doi/10.1002/smi.1185/abstract
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  3. Dolphin

    Dolphin Senior Member

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    http://content.karger.com/ProdukteD...e=256799&ProduktNr=223864&filename=329996.pdf

    Journal page where listed: http://content.karger.com/ProdukteDB/produkte.asp?Aktion=Ausgabe&Ausgabe=256799&ProduktNr=223864
  4. Dolphin

    Dolphin Senior Member

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    Tate Mitchell posted the following on Co-Cure https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1207b&L=co-cure&F=&S=&P=7462:


  5. Dolphin

    Dolphin Senior Member

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    Given the figures (113) and the cohort, Georgia cohort, I'm 99.99% sure it uses the so-called "empiric" criteria, as those match figures for it in other studies on the Georgia cohort.

    There is a petition against those criteria, with 2595 signatures currently, at: http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/signatures/page/52
  6. Dolphin

    Dolphin Senior Member

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    I think this is stretching it/misleading. For example, GET in its pure form, has nothing to do with "improving adaptive coping capabilities". If people improve with it, what they have to cope with might be less, but that's the same for any therapy.
  7. Esther12

    Esther12 Senior Member

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    So it's another Nater study in Psychotherapy and Psychosomatics which got CFS patients to fill in questionnaires, but has no control group of people with a disabling non-psychiatric condition (like MS) to compare results with? And then the answers of CFS patients are taken as evidence of dysfunctional behaviour/cognitions? With a press release?

    They must be so proud of themselves. Does he try and claim CBT and GET have been shown to be effective in double-blind RCTs again? That was good for a laugh.
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  8. WillowJ

    WillowJ Senior Member

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    thanks, Tate, for the info, and thanks Dolphin for the post.
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  9. biophile

    biophile Places I'd rather be.

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    Is this another one of those Reeves' legacy studies or was it initiated more recently? The (probable) use of the Reeves criteria is a red flag. The fact that Reeves' name in on the authors list is also indicative the criteria was used. Reminds me of Heim et al on childhood adversity: use dubious Reeves criteria, do not use adequate controls, then 'replicate' it.

    What a revelation, people suffering from globally disabling symptoms, which are dismissed and ridiculed, have different "coping strategies" than healthy people. As Esther12 already noted, no adequate illness control group, which must account for illness burden, suffering, and psychosocial environment. To be fair, this may be difficult, finding patients with a well-established/accepted disease with comparable global impairments but little or no treatment and placed in the same psychosocial environment as ME/CFS patients. Perhaps mainstream diseases found in remote areas of the world?

    Alternatively if one was more cruel, you could take a bunch of CDC biopsychosocialists, induce a series of or maintain a state of chronic infection(s) with comparable symptoms and disability as ME/CFS, refuse treatment and any investigations except the most basic (but not anything which will detect said pathogens), let them hover at or below the poverty line without adequate assistance, "poison the well" by telling their friends and families the subjects are suffering from a functional psycho>somatic illness perpetuated predominately by cognitive and behavioural factors, express frequent disbelief and occasional ridicule everytime they claim something is wrong or attempt to describe their symptoms in a manner that contradicts the official party line, cut off their insurance if they refuse to make themselves better after CBT/GET, and, did I miss anything else to control for? Let us see how their coping is after 5 years of that, and label it maladaptive without evidence showing it is actually maladaptive.

    The "escape-avoidance" strategy (most prominent) may be a natural consequence of chronic pain/discomfort and attempts to reduce post-exertional symptoms.

    Sounds like irritability and frustration. Not really a surprise, given the combination of symptoms/impariments, and bullshit.

    Well, keeping one's emotions to oneself is wise if outbursts of emotions can exacerbate symptoms, and if such expressions of emotions are discouraged or even derided. Accepting responsibility is bad? Well, I guess it can be if overly perfectionist or guilt-ridden. But really, not surprising in a society which blames such symptoms on patients, and if they become more sensitive to pressure or less able to defend against criticism, they may start blaming themselves in general. When the 1st doctor I went to said nothing was wrong, people dismissed my rarely-expressed symptoms as "complaining", and the 2nd doctor said recovery was in my hands, what else was I supposed to think other than somehow I was responsible? As a teenager, it also prompted me to question myself more about other areas of life.

    So it all boils down to who gets to decide when a coping mechanism is "negative" rather than the presence of these mechanisms? Of course, we all know that "negative" is when the patients' seasoned observations contradict the CBT/GET therapists' ideological assumptions about ME/CFS. I myself am about to be very naughty and have a "maladaptive" nap which "maladaptively" helps to restore some minor functions for later without really affecting sleep time. ME/CFS affects everyday activities, so no surprise the coping mechanisms spread out to them too.

    This question keeps arising, but authors of such studies do not seem very interested in exploring it. Didn't their last study even suggest it was not specific to CFS? I'm sure they are least asked this same question.
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  10. alex3619

    alex3619 Senior Member

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    One of the big symptoms of pseudoscience is that whatever the evidence it can be used to support the model. If evidence can only support the model, not refute it, there is a problem. They always interpret from within their specific view - they rarely question it. When it is questioned it tends to be questioned by a relatively small number of people - like Richard Sykes.

    If they were serious they would take each of their general interpretions, develop the contrary and alternative view, and then design studies to put each of these views under rigorous testing.

    If a model is only interpreted in light of itself it tends to run foul of either begging the question or its close problem circular reasoning.

    Bye, Alex
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  11. Enid

    Enid Senior Member

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    Coping ? yes I did but not interested especially now medics/science have revealed pathologies from which it is possible to treat and move on - coping these revelations alone without the nitwits hell bent on behaviourism.
  12. caledonia

    caledonia

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    Another piece of bovine excrement from the CDC. Your tax dollars at work.
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  13. Sean

    Sean Senior Member

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    He he he...

    You do realise that behaviour will be classified as Defiant Napping Disorder (Type 2, NOS)?

    And that was a damn fine rant about experimenting on CDC biopsychosocialists. Right on target.
  14. Esther12

    Esther12 Senior Member

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    While I like your idea of testing researchers responses to the conditions of CFS, and agree that no alternative condition is ideal, I think that MS is a pretty sensible comparison group, particularly if an effort is made to roughly match levels of incapacity.

    A more complicated comparison group would be people wrongly diagnosed with CFS, and whose fatigue was later actually the result of a known disease. Didn't White do some study showing loads of patients sent to his CFS centre were wrongly diagnosed? Prior to sorting through them, all referred patients could be asked to do these sorts of questionnaires, and then differences in the results for those with 'CFS' and those later found to have other known diseases could be compared.

    There are so many of these bullshit questionnaire studies for CFS. I think most of the questionnaires used are so poorly designed as to be virtually useless, but if researchers are so committed to doing them, why not try to do them properly? Why not think about what questions you want answered, and then spend twenty minutes trying to work out the best way of doing so? For most of these studies it reads like they just want to do something cheap to get their name in a journal and damn the patients, or they want something which will give them results to support what they already believe and will be utterly unconvincing to anyone with different starting assumptions.
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  15. biophile

    biophile Places I'd rather be.

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    Esther12.

    Interesting suggestion about using controls who were seriously suspected of having CFS but were later excluded from that diagnosis. I think this is the White et al study you were referring to (http://shortreports.rsmjournals.com/content/3/1/4.full) where about half were excluded (from Oxford criteria); the most common medical exclusions were sleep disorders and pain disorders, while the most common psychiatric exclusions were depression and anxiety.

    Newton et al (http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf) also found (using Fukuda criteria): "Of the 40% of patients subsequently found not to have CFS the most common diagnosis was fatigue associated with a chronic disease (47% of all alternative diagnoses); 20% had primary sleep disorders, 15% psychological/psychiatric illnesses and 4% a cardiovascular disorder. Thirteen per cent remained unexplained (5.2% of the total referrals)."; the most common chronic diseases were neurological disorder, connective tissue disorder / autoimmune disease, and metabolic syndrome.

    What I'm concerned about in CFS coping studies is adequately controlling for the effects of ME/CFS on the brain, not just physical disability and the negative psychosocial environment. As MS can indeed present with cognitive impairment and emotional symptoms, it may be a good comparison, but I do not know enough about MS to be sure.

    Controlling for symptoms means all major symptoms, not just "fatigue". Pain in particular, as it can affect personality profiles and coping styles in ways which are resolved with successful pain medication. May be difficult to control for post-exertional states. I also wonder how many CFS patients attempt to cope by hyping themselves up in order to push through symptoms, or attempt to mask pain and flu-like malaise with novelty/pleasure seeking. CFS does not seem to cause much drug abuse in general, probably because increased sensitivity to the side-effects?

    Sean. Hehe. Rant? I'm submitting my 'research proposal' to the NIH for funding! :p On a more serious note, I did notice in the earlier stages of illness that prolonged napping could increase sleep inertia and sometimes interfere with main sleep time so shorter naps were wiser. However, now I don't seem to have those problems and I need the longer duration and unconsciousness otherwise I do not get the same benefits.
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  16. Simon

    Simon

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    I think that's a great idea. And I think the approach should be used in biological studies, particularly those of potential biomarkers, as well as studies lookinng at potential psychological factors. In both cases, the key question is 'how do we know these factors/markers are specific to ME/CFS, rather than some generic secondary consequence?'.
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  17. Esther12

    Esther12 Senior Member

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    Thanks Simon... it's a great idea relative to the way most CFS studies are done. In any other field I'm sure it would be seen as an obvious, mediocre and flawed (in some way I've not spotted) idea!

    Yeah - a lot of the same issues do apply to biological studies. It seems that 'CFS' research is often dependent on the assumption that it makes sense to lump all these different patients together under a diagnosis of 'CFS', and I think that this inevitably leads to people focusing on the secondary factors of unexplained fatigue (both physical and psychological) that occur in patients regardless of the different causes of fatigue. This seems most transparently absurd with the psychosocial stuff: "OMG - People with 'CFS' are more concerned about fatigue than healthy controls... lets treat CFS as if it's the result of fear of normal fatigue!"... but I wouldn't be surprised if it also played a role in a lot of gene expression, neurological, hormonal and autonomic type findings too. I pay so little attention to physical findings in CFS that I can't really comment though.


    The quackery that surrounds CFS is inevitably going to lead to some unusual responses from patients, and it's really difficult to control for that with other illnesses. MS does have a lot of the features that make CFS difficult, so even if an MS control group only shared some of the cognitive differences between CFS patients and healthy controls, it still points towards a possible explanation (living with a chronic illness is a bit of a shitter, and affects the way one fills in questionnaires about one's life).

    re this Nater paper: It would be interesting to see the reviewers comments. This paper was left unpublished for a long time - it would be interesting to know if anyone spotted the problems with it but decided to just let it be published in the end anyway. With the Nater personality paper, it looked like they added in a control group with health problems (the weird 'insufficient fatigue' group) after collecting their initial results.
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  18. Sean

    Sean Senior Member

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    Agree. It is an approach that (surprise, surprise) has clearly failed to provide a primary explanation or therapy. And it is way past time the psych crowd conceded this, and got out of the way so the responsible adults can start dealing with the mess the psychs have left behind.
  19. Esther12

    Esther12 Senior Member

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    Just had a look at the full text. I've not taken the time to read up around this topic, but there was nothing here which made me think I should. I read a few bits on the Ways of Coping Questionnaire, but wasn't able to find a copy of it, which does rather limit my ability to understand some of their results (it can be really difficult to find copies of some of these questionnaires, and I didn't think it was worth the trouble here).

    These are just my initial thoughts and notes, so don't expect much:

    Surely it's worth mentioning that [5] found almost identical levels of "maladaptive personality styles" in their control group with ill health, and in [4] 45% of the ill health control group were classed as having a psychiatric comorbidity... and this group suffered from less serious health problems than those in the 'CFS' group.

    Seeing as this new study has no control group with any sort of health problems, perhaps they thought that they could 'improve' the interpretation of results by missing this info out.

    Well, it was a population based study, but there are still the often mentioned problems with their selection CFS selection, but more importantly... their 'findings' are of no real value without a control group who are suffering from a comparable health problem.

    So a clear and consistent pattern emerged...

    re their example for escape-avoidance from the WCQ - this could indicate a problem with the selection of their CFS sample, as other research has shown that CFS patients tend to drink less than normal, and (I think... my memory's less good on this one) eat more healthily and smoke less than normal. I would have expected them to have looked in to whether there was independent evidence which showed CFS patients were more likely to have taken part in the sort of behaviour which they see as dysfunctional. I realise this is just one question, but the fact that they choose as an example one which refers to behaviours CFS patients are thought to engage in less than other groups, and this hasn't been commented upon, does seem a bit questionable.

    It's probably worth again pointing out that people with health problems tend to have to cope with more than healthy controls, which would be likely to affect the way in which a questionnaire like this is answered anyway.

    The list of coping methods more common in CFS seems to include a wide range of often contradictory responses. It's then assumed that all of these are maladaptive?! I'm not sure how sensible an assumption that is.

    or might be a consequence of illness.


    Why would anyone do this study without a control group with a chronic illness?

    What worthwhile question did the researchers want to answer here?

    What an important consequence. Thank God for this vital paper.
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  20. Esther12

    Esther12 Senior Member

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    One other thing...

    These are the coping types assessed by that questionnaire, with the ones associated with 'CFS' in bold:

    1. Confrontive coping (6 items) "Stood my ground and fought for what I wanted."
    2. Distancing (6 items) "Went on as if nothing had happened."
    3. Self-controlling (7 items) "I tried to keep my feelings to myself."
    4. Seeking social support (6 items) "Talked to someone to find out more about the situation."
    5. Accepting responsibility (4 items) "Criticized or lectured myself."
    6. Escape-avoidance (8 items) "Hoped a miracle would happen."
    7. Planful problem solving (6 items) "I made a plan of action and followed it."
    8. Positive reappraisal (7 items) "Changed or grew as a person in a good way.

    The coping types used seem very likely to depend more upon the situation than the individual. The quackery and prejudice that surrounds CFS makes seeking social support much less likely. The disability related to CFS means that it's usually impossible to go on as if nothing had happened. As the results from PACE make clear, there is normally no solution available for CFS, and it is not something which would change someone in a good way (unless you were really rubbish prior to falling ill).

    Now this paper seems even more pointless. What a surprise that chronic health problems and a sustained reduction in capacity did not lead to individuals feeling that they had grown as a person in a good way.
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