1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

[Chalder CBT] The role of acceptance in chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by Esther12, Jul 10, 2012.

  1. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Shimmy and dance, prepared for pain - they must be on another planet groping around to find something to make themselves relevant in the real medical world. How one feels (and the pain) - yes at times almost unbearable but my "behaviour" of no consequence. What a diversionary side show these people put up.

    It's been in the UK a psychiatric (and luvies) monopoly until now.
  2. Sean

    Sean Senior Member

    Messages:
    1,177
    Likes:
    1,824
    Thanks, Esther.
  3. Simon

    Simon

    Messages:
    1,289
    Likes:
    3,962
    Monmouth, UK
    I'm not sure it's quite so simple with pain, after all the body has two main systems to stop us doing whatever we are doing: one is fatigue, but the other is pain. Certainly I couldn't have watched a film or gone for a run with a blinding headache.When my pain was very bad I met people through chronic pain groups and being forced to stop activities was exactly the problem they faced with pain, regardless of fatigue, though that was often a problem too. In fact, I was struck with the similarites between our illness and chronic pain: post-exertional malaise, fatigue, the need for pacing, and sadly relapses too - not to mention some strong biopsychosocial views from those who don't have chronic pain but think they have the answers.

    But I do agree that it isn't reasonable to merely substiture 'fatigue' or 'pain'.
    WillowJ likes this.
  4. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Biopsychosocial ??? - what 4 Docs around me well know this mumbo jumbo. A bit more "BIO" (now revealed) best to follow to aid. All symptoms belong in a singular illness which at last is being unravelled. Fatigue is the result of illness (like any other illness too).
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,174
    Likes:
    5,157
    I'm sure lots of people would think that 'fatigue' cannot stop one from doing something: "It's just being tired - you can always push through that."

    That questionnaire is pretty funny, for either pain or fatigue imo, especially when thinking about the more severe types.






    So much depends upon semantics too..

    What are the responsibilities in 15? 10's 'any other goals'? 4's important things? 20's 'struggle'? Surely there's a meaning of 'struggle' which would apply to everyone trying to get something done while they were in pain? Or suffering from fatigue?

    I'm having trouble accepting some of this questionnaire stuff. It seems pretty intolerable to me. I would gladly sacrifice important things in my life to stop researchers acting as if these questionnaires can be relied upon.

    edit: I should mention that, in this paper Chalder did raise the possibility of things like social desirability bias (a problem strangely omitted from the PACE paper), and that I am now talking more generally of the way in which some researchers seem to make unfounded assumptions about the value of these sorts of questionnaires. I've forgotten most of the specifics of this Chalder paper now, despite having only read it a couple of days ago!
  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Esther - I cannot repeat enough (and everything I've said before) - if these ignorant people (blow semantics they are very clever with) - Myalgic Encephalomyelitis is the illnesss about which we who follow research findings know more despite the United Kingdom psychiatric monopoly and twaddle.

    This lot have held up real medicine - ignored and tried to hide international medical findings.
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,034
    Likes:
    8,385
    Amersfoort, Netherlands
    They need a third version of that pain/fatigue questionnaire. But instead of using "pain" or "fatigue" replace it with something really fun like "paralysis" or "broken legs." :)
    WillowJ, barbc56 and Snow Leopard like this.
  8. Esther12

    Esther12 Senior Member

    Messages:
    5,174
    Likes:
    5,157
    My questionnaire would only be helpful for the more self-aware quacks.

    barbc56 and biophile like this.
  9. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Quack quack quacks !
  10. Don Quichotte

    Don Quichotte Don Quichotte

    Messages:
    97
    Likes:
    190
    I may not be smart enough to understand why this study was published, but the way I understand it:

    This study is both trivial (obviously, someone who finds it hard to accept his/her illness or anything in their life for that matter is less content with his/her life and less motivated to find ways to function in the optimal way)

    And makes no sense- How can someone have less of something, by accepting that he/she has that something?

    There used to be a journal called-the journal of irreproducible results. They published scientific papers (with p values and everything required) that proved for instance eating cucumbers is eventually lethal (evidently everyone that ate cucumbers 100 years ago is dead).

    It was quite sad when they stopped publishing this journal. But, seems like the J. Psychosomatic research is efficiently filling in this gap...

    Just found out that JIR is being published again
    http://www.jir.com/history.html
    So, this will be a tough competition .
    WillowJ and ukxmrv like this.
  11. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Very smart Don Quichotte - I couldn't put recall and two words/ recall together 9 years ago - yet always knew absolutely nothinhg to do with the pathetics of these psychiatrists - the all in your imagination, personality modelling and all the rest of their mumbo jumbo - all in their imagination one might say.
  12. biophile

    biophile Places I'd rather be.

    Messages:
    1,371
    Likes:
    4,287
    My very first impression before looking in any detail was that they were probably encouraging "acceptance" from the perspective that the problem has to be acknowledged first before it can be dealt with (eg using CBT/GET of course). The opposite of acceptance is intolerance or even denial. "Perfectionism" comes in because perfectionists would hypothetically view their CFS as a violation of their high standards and be more likely to become distressed and deny CFS or engage in maladaptive behaviours like boom-bust or over-exertion.

    Aren't these the same people who believe CFS is perpetuated by the belief that symptoms are unavoidable and uncontrollable? Anyway, from the full-text for the cited CPAQ (http://www.somasimple.com/pdf_files/acceptance_pain.pdf). Pain willingness = "recognition that avoidance and control are often unworkable methods of adapting to chronic pain". That statement alone is enough to provide clues into the association between willingness and less symptoms. No surprise that people with more severe pain are more likely to want to avoid and control it. The questionnare seems to make no obvious distinction between reasonable avoidance/control vs unreasonable avoidance/control? Also, correlation is not causation. I think Esther12 already mentioned the importance of semantics.

    Below is the modified version which uses just the pain willingness subscale and replaces pain with fatigue:

    Simon already pointed out one of the most obviously irrelevant questions when used as a positive indication for a "lack of acceptance" as the severity increases: Q20 "I have to struggle to do things when I have FATIGUE." Q18 is just as bad, because an accurate estimate of the effects of fatigue is now a sign of a "lack of acceptance"? Q17 means that frequently avoiding post-exertional symptoms is now a sign of lack of acceptance too. The others aren't as bad, although it is difficult to see how a severely affected patient can make serious plans (Q14) without wanting to have a better control over fatigue, and it is understandable why patients would be willing to sacrifice important things (Q4) to reduce severe fatigue.

    Simon also made another very good point. In the cited CPAQ paper (http://www.somasimple.com/pdf_files/acceptance_pain.pdf), the "'Pain Willingness" factor (the one they borrowed for 'lack of acceptance') only correlated weakly with physical disability (r=0.33) and even less with work status (r=0.24) (see this paper, Table 3). However, it correlated quite strongly with psychosocial factors eg Depression (r=0.5). So the questionnaire they borrowed, which has been used extensively in pain studies, suggests the key link is with psychological rather than functional measures."

    The relationship between lack of acceptance and aspects of perfectionism is unsurprising, considering that setting higher standards beyond limitations causes "goal discrepancy". Another possibility is that self-reported physical function scores are affected by the mismatch between what we want to do and what we can do, increasing awareness of limitations.

    As many others here have already asked, what exactly are the authors "accepting" here? It seems that the authors are insisting on acceptance of fatigue but not disability. That said, proponents also like to ignore objective data about disability when it conflicts with their hypotheses. CBT for CFS seems to be about focusing less on symptoms, "breaking the association" between activity and symptoms (as if symptoms should not cause disability, and what about post-exertional exacerbtations?), and no longer seeing oneself as a "patient". On the other hand, they are not about hardcore pushing through symptoms either, more about gentle graduated increases to (hypothetically) build up a tolerance.

    However, as Snow Leopard succinctly stated: "Except the only 'functional' change they have ever measured is a change in questionnaire-taking behaviour. They have not measured actual differences in activity patterns and as such, the overall behavioural component is purely hypothetical."

    Sparrow stated that "I think there are pieces of what they are showing here that make sense, but then they've completely missed the mark on their interpretation." That sums up my thoughts on many components of the cognitive behavioural model of CFS. They appear to have a glimpse through their own narrow perception, but do not really understand what is going on, "PEM = deconditioning" and "breaking the association between activity and symptoms" are classic examples.
  13. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,787
    Logan, Queensland, Australia
    There is a correct answer for most of these questions they ask: not applicable. Just mark everything N/A and then complain about the questions. :D
    WillowJ, barbc56 and Sean like this.
  14. Calathea

    Calathea Darkness therapy

    Messages:
    1,083
    Likes:
    535
    Scotland
    So by "acceptance" they mean "denial"?

    The main thing that strikes me about that questionnaire is that they are fruitful questions for discussion, but they are not questions which can be answered with a yes or a no. And as everyone else has pointed out, as a questionnaire it's set up under the assumption that ignoring symptoms is always the healthiest approach. This is nonsense. The problem is how to find a good balance between paying attention to symptoms and not worrying about them. Plenty of people with ME worry too much about symptoms, everyone does it from time to time, and I do think that spending too long on this forum can lead to this as well. But then, people with ME are also prone to ignoring symptoms when this is actually a bad idea, trying to push through or not even realising that something is a problem. As I said, balance.
    Sean likes this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,787
    Logan, Queensland, Australia
    In my experience I ignore symptoms a lot more than I worry about them. In my case I was a perfectionist, and this meant I kept pushing too hard - it took me a long time to learn to pace. My health has been a lot more stable since I recognized key symptoms (in all their forms) and used them to guide my pacing.
  16. Sean

    Sean Senior Member

    Messages:
    1,177
    Likes:
    1,824
    Exactly my question. Seems a very slippery blame game with words they are playing here. (And not for the first time.)

    This is all they have achieved, as far as I can see. A modest shift in scores on superficial, methodologically problematic, subjective self-report questionnaires, independent of more reliable, realistic, objective measures of possible therapeutic benefit.

    And it is pretty unimpressive.
  17. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    The "physical symptoms" and the "worry about the symptoms" are two separate things.



    I don't "worry" about my symptoms intruding in my life but they still do.



    One can "worry" less about symptoms but it doesn't stop the actual disability, loss of mobility, pain, PEM, obvious sore throats and swollen glands, repeated viral infections, sinus infections, vomiting, diarrhoea, falls, POTS, etc from occurring. This has a huge impact on my life.



    The questionnaire is trying to trick patients into confusing their emotions about their physical symptoms with the physical symptoms themselves.



    As I said, by nature or luck I don't worry about my symptoms, but that doesn't make any difference to them actually happening or not.



    There will be some patients that this is not so clear cut but it would be to our detriment to concentrate on these people because these authors are talking about all of us.
  18. barbc56

    barbc56 Senior Member

    Messages:
    1,348
    Likes:
    715
    Just looked at this thread quickly, but is there a chart or something that tells you what range people fall in. Hope this makes sense.
    Barb
  19. Esther12

    Esther12 Senior Member

    Messages:
    5,174
    Likes:
    5,157
    Do you mean the distribution of results one would get from an adult population? Or those with problems with chronic pain?

    I couldn't see anything like that I'm afraid, and this isn't a topic I previously knew anything about.
  20. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,787
    Logan, Queensland, Australia
    Is it duck season already? :D
    Enid likes this.

See more popular forum discussions.

Share This Page