The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue

Discussion in 'Latest ME/CFS Research' started by RogerBlack, May 18, 2017.

  1. RogerBlack

    RogerBlack Senior Member

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    http://journals.sagepub.com/doi/full/10.1177/1359105317710246

    Found from a retweet from prof Coyne, who is a coauthor with Keith Laws on another earlier paper http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/abstract "Results of the PACE follow-up study are uninterpretable"
     
    Last edited: May 18, 2017
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  2. Esther12

    Esther12 Senior Member

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    New from @Keith Laws. Pleased to see he's still writing on PACE as I'd not seen anything from him for ages. Sounds like he's done quite a bit of reading. Interesting to contrast the way NICE used legitimate concerns about bias in patient surveys to dismiss them while turning a blind eye to some of the problems with the RCT used to promote CBT/GET.

    I re-watched the 2008 Baker RSM talk on the NICE guidelines a few months back, and remember that being pretty frustrating for how trusting he was of poorly done RCTs as the 'gold standard', while also talking meaninglessly about patient involvement.



    I've not really dug into the NICE stuff since I got more interested in CFS research, but it does seem there's a lot of frustrating stuff to be found there.
     
    Last edited: May 18, 2017
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  3. wastwater

    wastwater Senior Member

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    I vote increase
     
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  4. alex3619

    alex3619 Senior Member

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    I currently think classical CBT, call it CBT0, can help or hinder or do nothing, it depends on the case. So it might be useful for some patients, and worth considering, as might other slight variations on CBT, call them CBT1. CBT2, as exemplified in the PACE trial, we can demonstrate using their own data that patients are worse off. It did not reach significance, as was pointed out by Keith Laws, but it was still the case.

    Let me reiterate, CBT2 is quite different to CBT0.

    My best guess is most patients are minimizing the impact of CBT2 and GET2 via various strategies, including decreasing overall activity so they can do more on the recommended activity etc.
     
  5. Dechi

    Dechi Senior Member

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    CBT is helping me manage my anxiety. It has no effect on the illness itself, but I am grateful that it helps me sleep better, most of the time. Sometimes I just can't be helped, just too wired. CBT is nothing magical, it's just a way to modify the way we think about and manage stressful situations or thoughts.

    If it were used to try and manage the illness, then yes, I really think it would just create more anxiety. But used it the context of managing anxiety, it does work.
     
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  6. RogerBlack

    RogerBlack Senior Member

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    I would love access to CBT, for this. It might help. The alternative is drugs with huge lists of side-effects.
    Alas, the real likelyhood of any CBT practitioner being into 'illness perpetuating behaviour' stops me. I don't have the energy to fight this.
     
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  7. alex3619

    alex3619 Senior Member

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    This is another tragedy of the CBT/GET brigade. By creating this concern they are actually leading to fewer patients being able to use CBT to manage their distress. It actually makes provision of psychiatric services more problematic.

    I have had classical CBT ... it didn't help much but then I was already on the path to adopting rationalism at the time. It didn't hurt though. Classical CBT, or CBT0 as I referred to it above, is a viable option for some of us. I guess in the UK there might be a big issue here. It might however be possible to investigate to find out what kind of CBT is on offer.
     
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  8. Yogi

    Yogi Senior Member

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    @RogerBlack - Can you add Keith Laws and 'JHP' to the title "Distress signals: Does cognitive behavioural therapy reduce or increase distress in CFS/ME?" It says "chronic fatigue" and may get wider readers on the forum.

    I second this. I would take CBT for stress or anxiety and think it would be helpful. However given how the PACE guys have manipulated and bastardised the original CBT I would not take any CBT now and would run a mile from it and any pscyhs.

    This article is good but one needs to throw the net even wider and examine the distress and harm that PACE authors have caused.


    They really are good at hijacking terms and giving them other meanings - "CBT" and "recovery" and ME relabelling as CFS etc etc. The PACE people really are if you think about it just crooks and criminals. You could not do this in any other profession or you would be done for fraud and trademark infringement.

    Ironically nearly all my stress in my life is from these psychiatrists and their actions.
     
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  9. Yogi

    Yogi Senior Member

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    RT and thank him:


     
    Last edited: May 19, 2017
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  10. Yogi

    Yogi Senior Member

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  11. Barry53

    Barry53 Senior Member

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    I think that is a very valid distinction w.r.t. CBT and ME/CFS: Managing anxiety (+) versus managing the illness itself (-).
     
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  12. Esther12

    Esther12 Senior Member

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    re CBT: having seen the way the BABCP works, and the tollerance for poor quality and spun research, I'm wary of any form of CBT in the UK. It's good to try to think calmly and clearly about the issues one faces, and some of the tools of CBT may be useful for that for some people, but I think I'd prefer to just make use of those tools and resources myself rather than end up with some therapist who could easily do more harm than good. I know a few of people with health problems who found CBT therapists for anxiety completely worthless, while still finding aspect of CBT that they've investigated for themselves to be helpful.

    It could be that there are some mental health problems that fit very neatly into a box, and can be helped by a therapist who necessarily only has a very limited understanding of the person's life, but where people's individual circumstances play an important role in things there's a lot of room for misunderstanding and misjudgements with a therapist who only spend an hour a week with you. It seems to me that a lot of CBT models simplify people's problems in a way that gives therapists a misguided view of howthey can be overcome.

    It's not as if there's an army of CBT therapists who were raising concerns about PACE and the way results were spun. How much faith should we have in these people to get important judgements right?
     
    Last edited: May 19, 2017
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  13. Keith Laws

    Keith Laws

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    Yes, apologies - that has turned out unclear - I meant it to indicate that the Cochrane meta-analysis covered the same studies that underpin NICE CG53 (viz the York systematic review by Chambers et al 2006). Chambers et al did not look at 'distress' in CBT; the only other meta-analysis around that time (as you probably know) was by by Malouff et al (2008) and they did not mention 'distress' once in the review. So, the Cochrane (Price et al) is the best (and only) evidence on distress at the time of NICE CG53 guidance...and the studies at that time do not support CBT in reducing distress
     
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  14. Esther12

    Esther12 Senior Member

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    Thanks for clearing that up, and for your article.

    I'd actually just deleted that post so that I could double check things myself, but you've saved me the trouble!

    Here's my oringal post in case anyone else is confused:

     
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  15. Yogi

    Yogi Senior Member

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    I dont't know if everyone here or Prof Keith Laws know this but the NICE CG53 was also taken to court over not listening to patients and charities over the wrongful emphasis on CBT/GET and the undisclosed bias and conflicts of interests of the GDG (but case lost) which are now being exposed in PACE trial.

    http://news.bbc.co.uk/1/hi/health/7881116.stm

    "No decision about me without me" by NICE is hypocrisy.
     
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  16. Keith Laws

    Keith Laws

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    NICE have repeatedly over-stretched, misrepresented, assumed and 'invented' evidence.... when it comes to the efficacy of CBT in various disorders https://www.theguardian.com/science...ychological-therapy-cbt-overstepping-evidence and https://theconversation.com/are-tre...a-and-bipolar-disorder-just-plain-wrong-54369 Their conflicts of interest are legion
     
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  17. Esther12

    Esther12 Senior Member

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    That was also before my time, but I've read some of the details of that, and the case presented against NICE looked to have some serious flaws. There was a good case to be made, but if you're going to take on authority figures in that sort of way, you will not get away with any sloppiness or stetching of the truth.
     
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  18. NelliePledge

    NelliePledge plodder

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    my experience of CBT was as a sausage machine of go away with this worksheet do the work yourself, come back for the next session talk briefly 5 or 10 minutes basically checking you;ve attempted the homework then the rest of the 30 minute session is telling you what to do next and giivng you the next worksheet, bye see you in 2 weeks

    as Ive mentioned on other posts I have been fortunate enough to have been able to pay for private person-centred counselling for several years with significant benefits in coping with mild situational depression and enabling me to keep working. started years before ME/CFS diagnosis.

    My understanding is that some of the people delivering CBT actually do counsellling under the radar instead alongside
    so maybe if you're lucky to drop on one of those people you do a lot better, although in the format I had of fortnightly 30 minute sessions not sure you'd achieve much

    no comparison between the 2 psychological approaches Ive experienced
     
  19. A.B.

    A.B. Senior Member

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    I fear that despite all the criticism the situation might change very slowly, because the bias is so entrenched. Even Cochrane is under the influence of the CBT/GET lobby.

    Crawley appears to have responded to criticism by doing rounds in the UK medical establishment, smearing anyone critical of her work as irrational and anti-science. The goal of the CBT/GET lobby appears to be remaining in power for as long as possible, no matter the cost to patients.

    The rest of the CBT/GET lobby seems to be gradually shifting towards "medically unexplained symptoms" and ever more heterogeneous case definitions. Which will give them more patients, more influence, and new opportunities to gain funding. Lumping in patients that have little in common might also be a clever tactic to prevent strong activism movements from forming which could actually fight back. They are probably realizing that they will lose ownership of CFS at some point and are looking for new pastures.
     
    Last edited: May 19, 2017
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  20. ladycatlover

    ladycatlover Senior Member

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    Went to the Royal Courts of Justice in 2009 for the case. 2 days. Most of it didn't make much sense to me, but I was basically there to be a supportive body. :sluggish: There was a lot of to-ing and fro-ing on the second day, and rumours but nothing real to know.

    [​IMG]Royal Courts of Justice from Bell Yard Entrance by Maggie, on Flickr

    [​IMG]Royal Courts of Justice, Trev and friend by Maggie, on Flickr

    The night after the second day we went to see Graham Norton in La Cage aux Folles. Some much needed relaxation after 2 days sitting in court! :) The theatre (Playhouse, Northumberland Ave) was very helpful over getting wheelchair in, and looking after it during performance. I loved the energy of the dancers, so cheerful after 2 overlong days sitting in uncomfortable wheelchair. :thumbsup:



    (Sorry for the off topic bit about theatre, but it really made a happy difference to that London visit)
     
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