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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
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. Esther12

    Esther12 Senior Member

    Messages:
    5,254
    Likes:
    5,430
    http://www.jpsychores.com/article/S0022-3999(11)00212-1/abstract

    From the paper:

    How do you know what that is? What are they suggesting acceptance of then? This paper doesn't really seem to say. How are people supposed to know what level of disability should be 'accepted', and what can be changed?

    Does anyone know more about what 'acceptance' would tend to mean in these contexts? Having read the paper, I still don't really know. For things like anxiety, there's Acceptance of Commitment Therapy, but this paper seem to be talking of acceptance of fatigue, rather than cognitions. Hopefully someone here will be better informed about this stuff than I.

    re perfectionism, high standards, etc: Knowing what standards one should set for oneself is difficult without access to meaningful information about whether one faces long-term restrictions in capacity or not. If one is (for example) being wrongly encouraged to believe that one's reduction in capacity following a severe case of glandular fever is a result of deconditioning and a fear of exercise which can be reversed by behavioural change, then this quackery would be likely to lead to inappropriate standards being set. That seems to be the a common problem when someone's cognitions are managed with inaccurate information.
    WillowJ likes this.
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,241
    Likes:
    8,874
    Amersfoort, Netherlands
    I think they're equating fatigue with anxiety (or other psychological disorders). Since they also equate CFS with fatigue, ACT should be able to cure ME/CFS!

    It's unfortunate that Chalder is too much of a moron to help anyone and has settled for torturing ill people instead. Otherwise I'd admire her bloody-minded persistence.
    jace, barbc56 and CJB like this.
  3. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Strange one this - as far as I recall - "non acceptance" is very important whilst one pursues all availible tests and medics in the matter. "Acceptance" is when one realises they know nothing about it (especially the UK). Like any illness it is the sensible choice to research those who actually do know it, research and find treatments. Can't think CBT or GET would have aided, changed my "behaviour", increased my mobility, etc. My Neurologist said "find someone who knows and I will release my test results" - can't see how that ties in with any notion of "acceptance"- no just accept the situation do some exercise it'll make you better.
  4. wdb

    wdb Admin

    Messages:
    830
    Likes:
    578
    London
    Well that is quite confusing, I'm not sure I follow what she is on about at all. I thought the psychological theory was that we imagine we are much more ill that we actually are leading to activity avoidance and de-conditioning, now it seems they are saying the opposite that our problem is that we are not accepting enough of our symptoms :confused:
  5. Sparrow

    Sparrow Senior Member

    Messages:
    669
    Likes:
    767
    Canada
    Their conclusion completely contradicts what I know to be true, what has worked for me to improve my quality of life dramatically, and what I have seen demonstrated in the research of others. 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.

    Will being worried about doing the wrong things, perfectionistic about trying to please others in your life, and generally stressed out take a greater toll on someone with ME/CFS? Yes. Will using cognitive therapy to try to lessen unrealistic expectations on oneself help to ease that burden. Absolutely. It can play a positive role with some things, and that is one of them.

    But extending this to say that a person shouldn't even try to avoid fatigue and should just do stuff anyway and take the consequences of those actions is a recipe for disaster with this illness. In fact, just about everyone I've talked to who is very severely ill with ME got so ill precisely because they were trying to push through their symptoms too much.

    If you have neurological issues very similar to ours because of a concussion, apparently the medical advice is to AVOID THOSE SYMPTOMS LIKE THE PLAGUE, and to back off right away if you're doing something that triggers them. Because the body can't heal under that strain. I am positive that is the same medical advice we should be given. I know how much it has speeded my recovery when I've been able to back off and not trigger symptoms.

    Will they come up anyway now and then? Yes. And not beating oneself up about that is helpful. But they are going in completely the wrong direction here. Ugh.
    WillowJ, alex3619 and CJB like this.
  6. wdb

    wdb Admin

    Messages:
    830
    Likes:
    578
    London
    So lack of acceptance is positively correlated with fatigue
    The need to concentrate on getting rid of fatigue being true is the height of lack of acceptance, and so bad

    So what is practising CBT/GET if it is not concentrating on getting rid of fatigue ?
  7. Sparrow

    Sparrow Senior Member

    Messages:
    669
    Likes:
    767
    Canada
    This paper is saying that "acceptance" means accepting that you're going to feel like crap sometimes and not altering your behaviour to try to avoid that. So it's still very much following the (totally inaccurate) pretend you don't have an illness approach.
    PhoenixDown, justy, ukxmrv and 2 others like this.
  8. wdb

    wdb Admin

    Messages:
    830
    Likes:
    578
    London
    Thanks, that make a little more sense, or at least it sounds more consistent with their other theories anyway.

    I wonder if they took into account that less servilely affected individuals would likely be much more accepting as theirs would be a much lesser burden to accept ?
  9. Simon

    Simon

    Messages:
    1,337
    Likes:
    4,203
    Monmouth, UK
    Like others I'm struggling to understand the point of the paper.

    wdb: :). Maybe what they are saying is that we should pay less attention to fatigue (CBT) and accept the fatigue there is (acceptance), and either way get on with our lives regardless of fatigue - which is so much easier said than done. [edit: I see Sparrow beat me to this]

    A few other comments - though as I can't access the paper I'm relying on what I've read here:
    • What exactly are they measuring? I'm not sure how valid it is to take a questionnaire from one fieldand apply it to another regardless. One pain question is converted into:
      Er, yes, that's almost tautologuos, and itself might explain quite a lot of the correlation between 'lack of acceptance' and fatigue/impairement.
    • For Pain, 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.
    • It's also worth pointing out they have only demonstrated correlation, not causation. I'm sure the authors acknowledge this in the paper. Sure, accceptance and clinical outcomes both improved after CBT but there was no control group. PACE has shown how much untreated patients can improve - maybe their acceptance improved too and CBT itself may have had no effect whatsover on acceptance.
    Snow Leopard likes this.
  10. barbc56

    barbc56 Senior Member

    Messages:
    1,445
    Likes:
    863
    I'm also struggling with what the heck this study is saying. There is an inherent weakness in studies such as this. How do you define acceptance? What is acceptance. While I do think that anything that relaxes a person will help but only temporarily)

    I have never liked the word acceptance as to me it implies passitivity.(If that is even a wordo_O ). I will never accept some things that happen in life. I will never accept this illness. That being said, I have come to terms with it. Maybe a matter of sematics but I think it's an important distintion.

    Barb C.:>)
  11. barbc56

    barbc56 Senior Member

    Messages:
    1,445
    Likes:
    863
    I'm also struggling with what the heck this study is saying. There is an inherent weakness in studies such as this. How do you define acceptance? What is acceptance. While I do think that anything that relaxes a person will help but only temporarily)

    I have never liked the word acceptance as to me it implies passitivity.(If that is even a wordo_O ). I will never accept some things that happen in life. I will never accept this illness. That being said, I have come to terms with it. Maybe a matter of sematics but I think it's an important distintion.

    Barb C.:>)

    Deleted some of the above text as I was repeating what Simon was saying and he said it much better than I did. Edit again. So did Sparrow and others. :)
  12. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    184
    Northern Vermont
    I think many of US forget that we were once healthy. In other words we know what healthy is or was. It is important to accept this illness for our own mental wellness, but I choose not to accept the disdain and common ignorance of our medical system ( I.E. non ME CFS Doctors). Trying to be treated by a local & typical GP for ME CFS is liking banging your head against a brick wall. Pain Willingness......WTF!
    justy likes this.
  13. Esther12

    Esther12 Senior Member

    Messages:
    5,254
    Likes:
    5,430
    I increasingly think that, by their definition, CFS is necessarily a 'psychological' illness, because some of those with CFS can be manipulated in to behaving in a way which they consider to be more 'functional'.

    Even if, for example, certain viruses triggered immunological problems which caused a sustained drop in capacity, post-exertional problems, cognitive difficulties etc... most 'normal' human being would respond to that in a way which did not suit the preferences of those with social power (eg: they would consider themselves to be 'sick', and to be deserving of support and assistance). If some patients could instead be convinced to accept a greater degree of suffering, and sacrifice to their own identity, cognitions and behaviours in order to lessen the burden that they were to those in power, this would be seen as legitimising attempts to psychosocially 'manage' all patients given a CFS diagnosis.

    One problem with this, ignoring all of the moral problems with it and the fact that such an approach will lead to such anger and hatred from patients, is that they don't even seem to be very good at manipulating patients in this way, as they're now reporting PACE showed CBT/GET were ineffective at increasing the hours worked by patients. Maybe it's actually more like homoeopathy, but with more elaborate excuses?

    It's late, and I'm posting this without thinking it through too seriously.
    Sean likes this.
  14. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,296
    Likes:
    1,755
    Australia
    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.
    WillowJ, barbc56, Sean and 3 others like this.
  15. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    And "functional" change doesn't lend itself to the "snaphot" of questionnaires as the illness and symptoms wax or wane over time - years. I recall trying to encourage my baffled GP after her diagnosis and treatment of hypothyroidism saying "yes I feel a little better" - of course not all the other well known ME symptoms escalated to bedbound despite her treatment. She is a Doc and recognised her limitations, TC is a psychiatric nurse with answers ? ha ha. :cool:
  16. Sean

    Sean Senior Member

    Messages:
    1,214
    Likes:
    1,961
    Where did they make this rather important concession? I'd love a proper reference for this one.

    A failure to deliver a substantial and sustained economic benefit would be the single most damning fact against the CBT/GET hype-fest, and the hard nosed bean counters and policy wonks of this world will pay close attention to such a fact.

    More sciency excuses. :rolleyes:

    ••••••••••

    And where is the full raw data for PACE? Time for the world to get a good look at that.
    alex3619 likes this.
  17. Sean

    Sean Senior Member

    Messages:
    1,214
    Likes:
    1,961
    And why does lack of acceptance automatically equate with perfectionism?
    WillowJ and Enid like this.
  18. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    It's the little box mentality - about as pathetic as those "behaviourists" who devise them - then build their theories (in their dreams) on top. Having been accused (prostrate in Accident and Emergency) of imagining/faking illness by a psychiatrist one might diagnose the same problem with them - all in your imagination.
    Simon likes this.
  19. Esther12

    Esther12 Senior Member

    Messages:
    5,254
    Likes:
    5,430
    I shouldn't talk of this as if it were confirmed, as it's only from reports from a White presentation at a conference, and so second-hand. Although, as this rather important data hasn't been released by the PACE researchers, I think we can probably assume that the results are not great for them.

    Here's one of the reports I found via google, and there was one other saying similar things:

    http://wmmeg.weebly.com/uploads/4/8/6/8/4868611/120424_-_brief_report_on_bacme_conf_2012.pdf

    Look at how the DWP are handling current disability benefits reforms! If they can just alter questionnaire taking behaviour, then this will save them a lot of money.

    Anyway... back to the paper... here's the Pain Questionnaire they adapted:

    http://www.utwente.nl/gw/pgt/mw/klooster/CPAQ_ENG.pdf

    I pulled this from a blog post I was reading:

    I keep being surprised by how bad these sorts of questionnaires are, and what misguided faith some people seem to have in their ability to measure what they claim to be measuring.
  20. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,296
    Likes:
    1,755
    Australia
    This is definitely a case where substituting 'fatigue' for 'pain' can be totally misleading. Fatigue can literally stop you from doing something, whereas pain in itself simply makes it uncomfortable (extremely uncomfortable in some cases).

See more popular forum discussions.

Share This Page