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.
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A Response to Professor Fred Friedberg’s Editorial about CBT

Discussion in 'General ME/CFS News' started by Daisymay, Oct 15, 2016.

  1. Daisymay

    Daisymay Senior Member

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  2. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Excellent. Very clear. Shout it from the rooftops. But can he get it published?
     
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  3. alex3619

    alex3619 Senior Member

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    Here is the thing. We have no issue with CBT, we have an issue with CBT2. We have no issue with pacing, we have an issue with pacing2. We want recovery, not recovery2. About the only thing that is abundantly clear is that we don't want graded exercise, though many of us are fine with being active up to our limit.

    What a lot of people, including doctors, and maybe especially doctors, do not realize is that the different uses of the terms have vastly different application and meaning.

    Pacing was not tested in the PACE trial, they tested adaptive pacing, a treatment methodology invented for the PACE trial and used nowhere else.

    When a drug company does this with using poor comparison choices or very poor treatment protocols it seems more clear that its a faulty and even deliberately biased study. When this happens in psychiatry nobody seems to care. Which directly implies that, for all the issues that exist with drug companies biasing research, it seems that psychiatry is worse.

    CBT used in PACE does not resemble CBT used in support for people with other illnesses.

    The kind of recovery claimed in PACE is so poor it would probably make me suicidally depressed. Maybe I am just hard to please, but I need hope for recovery, not pretend recovery.

    Normal is not normal either.

    These people love using overloaded claims and terms. They use highly technical definitions of common terms that are understood differently by most. They then fail to correct misunderstandings, and use the terminology in ways that foster misunderstanding.
     
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  4. Barry53

    Barry53 Senior Member

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    Professor Fred Friedberg seems unable to grasp that the CFS community objects to being told CBT will cure their problem. How can he not see that?

    Edit: The above was incorrect. See posts #7 and #10 of this thread.
     
    Last edited: Oct 16, 2016
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  5. taniaaust1

    taniaaust1

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    10/10 to Professor Malcolm Hooper for that letter.
    ....

    Unlike CBT used in some other conditions, in ME/CFS it has been used in abusive ways eg getting patients to change their behaviour and push themselves in ways which end up worsening their illness and actually harming them.
     
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  6. JaimeS

    JaimeS Senior Member

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    Friedberg's entire point was that ME patients were being reasonable by rejecting 'CBT2' and that CBT as he practices it -- for helping people cope with long-term illness -- was getting a bad name because of their widely-publicized (crappy!) research. It was an attempt to separate himself from the UK psychobabblers, so far as I could tell. Here are some excerpts:

    Boldfaced mine.

    So basically he says "beliefs don't affect the illness's outcome, as shown by this-and-this study" and "even if you firmly believe CFS is affected by 'illness beliefs' the data doesn't support you and it therefore doesn't make sense to treat patients under that assumption."

    Boldfaced mine.

    ....aaaand it goes into some of them, including but not limited to:
    • The definition of 'recovery'
    • The effect of perception on recovery -- that is, do patients feel they now match their premorbid wellness, or not? This is different from 'I've recovered from my current episode' or 'I feel better than I did a month ago'
    • lack of objective measurements
    • potentially no net increase in activity IRL, just management of energy envelope
    He doesn't do a Tuller but he gamely delves into a few of PACE's many issues.

    Then we have this:

    So basically if patients learn to be as active as they can within their energy envelope that's a win, but that's not 'recovery'.

    And we wind down with:

    It ends with stuff about how to engage with patients -- and suggests not to call any kind of therapy CBT. I think this is the only bit, apart from the intro which doesn't clearly outline his stance, that rubbed me the wrong way. Admittedly, CBT is used for other serious illnesses but it means something very different -- and is practiced very differently -- to and on ME/CFS patients.

    All told though, it's not only "not bad" -- it expresses and outlines many of the views of the patient community while still being geared towards physicians.

    I removed citations because they were showing up oddly here, with the entire APA-style citation inserted into the dialogue, but if you want to double-check some facts here is the original article: http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1200884

    -J
     
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  7. JaimeS

    JaimeS Senior Member

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    He literally says exactly that!

     
  8. RogerBlack

    RogerBlack Senior Member

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    It can be hard for us not to lash out at people who are not the usual supportive crowd.

    Reading the article in question, rather than seeing the quotes he's contrasting against does indeed lead to the conclusion this is a good article.
    http://www.tandfonline.com/author/Friedberg, Fred - his publications in that journal seem to be quite on-topic and reasonable.

    For example
    http://www.tandfonline.com/doi/full/10.1080/21641846.2015.1090801
    On self managment of people who did not simply improve after first attempt.
    And then going on to relate this to CFS.
    He's not saying the behaviours are 'avoiding getting better' - he's saying that horribly fatigued people are not great at recognising and dealing with their fatigue to avoid future crashes, and actual proper monitoring and help may enable them to better manage.
     
  9. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Here's part of the Friedberg article that strikes me as interesting (sorry, I don't know how to turn quotes pink):

    'CBT and illness beliefs in CFS

    A number of psychological studies have examined the role of illness beliefs as a potential persistence factor in prolonged fatigue states, including CFS.[6Nijrolder I, van der HorstH, van der Windt D.Prognosis of fatigue: a systematic review. J Psychosom Res.2008;64(4):335–49. doi:10.1016/j.jpsychores.2007.11.001[CrossRef], [PubMed],[Web of Science ®]] Certain beliefs have been postulated to predict poor outcomes, in particular ascribing the illness to a physical or somatic cause (given the lack of consistent medical findings or an objective test for diagnosis). Yet CBT studies in CFS have not confirmed the hypothesis that somatic attributions predict poor outcomes.[6Nijrolder I, van der HorstH, van der Windt D.Prognosis of fatigue: a systematic review. J Psychosom Res.2008;64(4):335–49. doi:10.1016/j.jpsychores.2007.11.001[CrossRef], [PubMed],[Web of Science ®]] In one of the first published controlled CBT trials in CFS, it was concluded that: ‘Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group.’[7Deale A, Chalder T,Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. J Psychosom Res.1998;45(1):77–83. doi:10.1016/S0022-3999(98)00021-X[CrossRef], [PubMed],[Web of Science ®], p. 77] However, the implicit message to patients continues to be that attributing the illness to a physical cause is an error that needs to be corrected.

    As a result, patients may believe that practitioners of CBT will try to convince them that their personal beliefs maintain their illness and minimize any role for (a more legitimizing) biomedical pathology. However, one may view the etiology of CFS, if the data do not support the utility of trying to convince patients they are not physically ill, then it would seem to be counterproductive to take such an approach.'

    -------

    The above quote makes it clear that CBT does not change ME/CFS patients' beliefs in a physical cause, and CBT based on trying to change this belief does not work. In other words, what a patient believes doesn't effect the outcome. So far, so good. It's excellent that he points out that trying to change 'false illness beliefs' is ineffective.

    However, he does not seem to go the next step and say this is because there are no 'false illness beliefs' because ME/CFS is a physical illness. I think this is what Professor Hooper is rightly pointing out. The treatment doesn't work because it's based on a false premise, not because it's not a good enough method or because beliefs don't influence outcome, but because we are actually physically ill.

    I therefore think Prof. Hooper is right to criticise the paper on this basis, though perhaps he is unfair to damn it altogether. The paper does make lots of good points about the weaknesses of the PACE trial, and I'm certainly grateful for that.

    Friedberg's conclusion includes:
    ------

    'Without the disease-denying rhetoric and exaggerated claims regarding recovery that have been linked to this illness, perhaps CBT would not have the bad reputation it has among many in the CFS community. That said, many patients do not care about the type of intervention as long as it helps them. Yet patient reaction particularly among activists has thoroughly rejected the utility of CBT. Perhaps a new approach to educating providers (and influential medical practice organizations) is needed in this divisive environment. According to a recent qualitative study [20Chew-Graham C, Brooks J, Wearden A, Dowrick C,Peters S. Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study. Prim Health Care Res Dev. 2011;12(2):112–22. doi: 10.1017/S146342361000037X[CrossRef], [PubMed]] carried out with 19 CFS patients, factors that influence whether or not a patient engages with a behavioral intervention for CFS are: ensuring that the patient feels ‘accepted and believed’; that the patient accepts the diagnosis; and that the model of treatment offered matches the model of illness held by the patient. This is the kind of thoughtful, data-based approach that should be considered when educating practitioners about how to help the CFS patient.'

    -----

    So it seems he is concluding that CBT still has a place in ME/CFS management so long as the practitioner and patient hold the same beliefs about the cause. Not sure where this gets us.

    He implies that trying to change illness beliefs is ineffective, rather than wrong, and he still seems to think it is not known whether ME/CFS has a physical or psychological cause. That's where I can't agree with him.
     
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  10. Barry53

    Barry53 Senior Member

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    Thanks for the correction, because it is an important one. I obviously inferred too much into the first sentence of Professor Hooper's letter. I think Professor Hooper's main beef is indicated by this excerpt from his letter:-

    "However, a key consideration which he fails to mention is the significant difference between supportive CBT and directive CBT."

    I do not think Professor Hooper is saying Professor Friedberg is entirely wrong in what he says, but saying the message is unclear. That Professor Friedberg, in rightly advocating the benefits of supportive CBT, is not clarifying that in the UK it is directive CBT that "the system" tries to shot blast ME/CFS sufferers with, and that patients justifiably get very annoyed by.

    Basically, that CBT is a good medical tool being used in an abusive way. Just like the way a scalpel can be used for good or bad.

    I think that no matter what physically debilitating condition a person may be suffering from, CBT is part of a suite of measures which can help some people cope with the issues. Also, if an underlying physical condition really has been fixed, but mind and body have had to adapt to that condition for a long time, then a process of rehabilitation will likely needed, and CBT might have a role there also. It supports, but does not fix, physical conditions.

    So my apologies to Professor Friedberg for misunderstanding where he was coming from.
     
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  11. AndyPR

    AndyPR RIP PR :'(

    Inserting quotes;
    Screen Shot 2016-10-16 at 12.31.43.png
    So use the drop down menu to select quote. You can either hit quote first and then paste the quote inside the quote 'limits' or you can paste the quote into your reply, highlight it, and then hit quote.

    Hope this helps :)
     
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  12. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Thanks Andy, I'll try to remember that for next time!
     
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  13. Barry53

    Barry53 Senior Member

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    Two possibilities I can think of:-

    1) With any physically debilitating illness, there is potentially an additional depressive effect, which might include an element of fatigue. If so then CBT might help, but only with the additional, secondary effect, not the primary.

    2) In some cases, CBT might be helpful in rehabilitation from such a condition. It may be that with ME/CFS, for anyone lucky enough that the physical cause may have been resolved somehow, then CBT might speed up their rehabilitation. As Dr Sarah Myhill says:-

    "There is a place for CBT, but only when the underlying physical issues have been identified and only when these physical issues have been, for the most part, resolved. Some patients won't ever 'need' CBT and will happily progress to good fitness levels without this intervention."

    http://www.drmyhill.co.uk/wiki/CFS_-_treatments_which_are_not_worth_trying
     
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  14. RogerBlack

    RogerBlack Senior Member

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    I read it - in conjunction with his other papers as trying to flat-out avoid saying 'CBT as practised in the UK for CFS is abusive and not appropriate for a physical disease'.
    Which is likely just to alienate the people (the clinicians) he's trying to reach.

    I do not believe CBT can help the physical symptoms of my response to stressors - mental and physical.

    Is it possible that CBT could help me with: Worrying about the future excessively, coping strategies for interacting with people, accepting that sometimes I can't do things, better planning for the future rather than pretending it doesn't exist, being able to ask others for help - perhaps.
    All of this has directly and indirectly worsened my condition due to either the mental effort of concentrating on it, or using my physical energy badly.

    However, CBT as practised in the NHS (at least officially) has the rhetoric of 'perpetuating their illness beliefs', which means that even if I could access them, there is a large chance that I would get a therapist that believes the party line, and won't actually try to help with the above.
     
  15. JaimeS

    JaimeS Senior Member

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    I understand, but Friedberg would have to go in a great more depth on the biological factors in the illness to make that argument effectively, and:
    • His background is in psychology, and he is not qualified to make these claims
    • That is not the purpose of the article
    The purpose of the article is to outline why ME patients have such issues being prescribed CBT, and it's successful at that. An article can't be all things to all people and address all of the issues that concern us in a thorough manner -- that would take a book!

    I disagree (a bit!) with that interpretation. It seems to me that he is saying that because people deny that CFS is a 'real' disease ("Without the disease-denying rhetoric"), and because people swear that CBT makes patients recover (and exaggerated claims regarding recovery) CBT is unacceptable to us as patients.

    Probably true.

    Then he qualifies with a statement that means "I'm sure there are some patients who will still try anything that even has the slightest chance of helping them.

    Definitely true.

    As far as "he is concluding that CBT has a place" in ME, sure he is, and I agree. (Stop your spit-takes and listen, guys.) CBT in its original incarnation is supposed to help you deal with the psychological consequences of illness. It's not meant to be engineered to convince you you're not sick at all. Wessley and Chalder warped it from its original incarnation but used the same name, because they know that CBT in it original form is a harmless intervention against which no one would argue. What they're doing is very different, but most therapists out there in the world don't know that unless they live in the UK and have worked with ME patients... Friedberg is an American who is aware of this. Thus it all sounds very on the up-and-up and we look like reactive morons when we argue so passionately against it. That's the idea.

    Friedberg is right: without the psychosomatic connotations and the insistence it's curative, I would have happily gone to a therapist to talk about my sudden loss of function, irrevocable ejection from my former place in life, and the occasional disbelief or misunderstanding of physicians or family. Contracting a debilitating illness is a psychological challenge that luckily many will never have to face. Because of the widely-held belief -- a minority here in the US, but still VERY widely held -- that CFS or whatever we'd like to call it is psychosomatic or has a psychological component -- I will probably never have the opportunity to speak to a therapist and work through the tangle of emotions that having this illness has engendered. Instead, PR has had to be my therapy, my support group, and my 'safe space' rolled into one.

    He doesn't imply that; he just doesn't take our side on that matter. He doesn't because again, then he'd have to argue biomedicine, and others would rightly point out that it's not his area of expertise. He's being conservative, not anti-patient.

    To put it another way, he has no proof that he personally can support or argue for, from a position of authority. He could try anyway, but then other scientists and physicians reading his work would laugh at him... rightfully. (This psych guy is talking about cytokines... what does he know about cytokines?) And he would lose his audience. Again -- rightfully so.

    He's a researcher and not a patient advocate. We can't expect everyone to take up METAPHORICAL (hi, QMUL!) arms against UK psych research as a whole. It's not just tilting at windmills, it undermines his argument to those who don't know the full story.

    Exactly.

    I do think that he has the authority to say this, and I wish that he had. Can you imagine thousands of psychologists signing something saying that "directive" CBT for ME is unethical? That is something I would like to see.

    I think in general we've come across an academic that we'd like to shove into some armor and push into the ring of advocacy. Not everybody is going to be an advocate... but that also doesn't make them the Enemy. :)

    -J
     
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  16. Jo Best

    Jo Best Senior Member

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    The protocol for CFS aside, there is controversy among Psychology practitioners about CBT and concerns that it's over-rated. There's debate in the profession as to whether CBT is more effective than placebo and petitions like this one, set up by the Alliance for Counselling & Psychotherapy: supporting diversity, responsibility, autonomy and innovation in the psychological therapies, to NICE (not connected with CFS or ME) - http://www.ipetitions.com/petition/stop_nice-iapt_bias/
     
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  17. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    @JaimeS, I'm sure you're right that Friedberg has made a useful contribution that I certainly hope other psychs will read and understand. I don't see him as the enemy.

    If they could all accept his argument that they should stop using the Wessley form of distorted CBT to try to change illness beliefs that would be a huge step forward. His evidence based arguments that this version of CBT:

    a) doesn't change illness beliefs
    b) doesn't improve patient outcomes
    c) and that illness beliefs don't effect outcomes

    is a very powerful argument and I'm glad he's made it.

    As you rightly say, adding the further argument:

    d) ME/CFS is a physical illness, so the patients' illness beliefs are correct

    would be beyond the scope of his paper.

    What I was trying to say was that I'm glad Freidberg went as far as he did, but I also think a follow up letter from Malcolm Hooper that does take that extra step d) is justified and I hope it will get published.
     
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  18. JaimeS

    JaimeS Senior Member

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    That's very interesting, Jo, thanks for sharing!

    Thanks for clarifying, and I agree with all but that last part. Hooper's work seems antagonistic towards Friedberg, so I hope it gets revised and then published! :D

    -J
     
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  19. Barry53

    Barry53 Senior Member

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    Me too!
     
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  20. eafw

    eafw Senior Member

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    There are also many people who have been on the receiving end of CBT here in the UK, who will say how useless it is. It has very limited value but has virtually taken over in the NHS and they try and shoehorn it in everywhere - pain managment, expert patient etc all very CBT influenced.
     
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