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Article: A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 19, 2011.

  1. oceanblue

    oceanblue Senior Member

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    Good article, Cort.

    I missed that: was it in the paper or a press release/interview? thanks
  2. Cort

    Cort Phoenix Rising Founder

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    It is all about language! As the CAA noted Peter White didn't start off his press conference stating that the trial was effective - he started it off stating that CBT and GET weren't harmful and that the ME/CFS advocacy groups were wrong...

    Then you focus on on how much better CBT was than Adaptive Pacing instead of focusing on little movement there was...No one as point out notes the lack of functional improvement or the attempt to really measure functional improvement. In the end the treatment is a success if it makes people with CFS feel a bit better even if they are still not working or exercising or participating in many aspects of normal life.

    Its the same thing as the Belgian researchers who said the CBT trial wasn't a failure - so long as you lower the definition of 'success' (or the definition of effectiveness).

    If this trial had been put in the right context - were these patients cured or not? Or were they able to work now? Or were they even walking more? We don't even know if the participants were walking more! Presumably that's because the researchers knew they wouldn't be! Yet this is being touted by the media as an effective treatment for CFS! Its unbelievable.

    I think if the trial had been put in the right context the media response would have been - Behavioral therapies Not the Answer to CFS!
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks Bob - think I got most of them
  4. urbantravels

    urbantravels disjecta membra

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    Especially since I'm seeing headlines and ledes like "Taking it easy is not the answer in CFS!" and "Pushing yourself is best therapy for CFS!" Accompanied by a stock photo of people speedwalking.
  5. urbantravels

    urbantravels disjecta membra

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    This seems like a crucial point. Especially since we all know the major vested interest here is the British government wanting to get as many people off disability benefits as possible.

    If I were one of those fire-breathing, cost-cutting British lawmakers, I'd be wanting to know why my government just spent 5 million pounds to study a touted therapy that did NOTHING to improve people's functional status and thereby get them back to work? Oh, wait, it wouldn't even have shown that, because fully disabled people weren't able to participate anyway.

    As we all learn quickly when we enter the wonderful world of chasing disability benefits, "functional capacity" is ALL that matters when it comes to demonstrating whether disability exists. If "I feel bad" or "I feel a little better" were statements with any meaning at all to those who assess disability, it would be a LOT easier to win benefits, now wouldn't it.
  6. Cort

    Cort Phoenix Rising Founder

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    Great points Urban Travels - what a great question to ask the UK govt...so did this treatment get all those CFS patients off the dole? I don't think so......I hope somebody is asking that question right now.
  7. Mark

    Mark Acting CEO

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    Thanks Cort, for analysing the paper properly. Sadly, there don't seem to be many other journalists out there worthy of the name. I haven't seen any newspaper noticing how dramatically the PACE trial has flopped: "Get out and exercise, say scientists" is the order of the day, across all papers.

    Yes Sean, and thank you again for the positive spin I need so much right now. However, I'm afraid that the following is also true as a corollary, and I have to put it this way:

    "By any vaguely rational, empirical, and ethical real world standard these remain truly pathetic numbers, that simply do not deliver any practical, meaningful improvement whatsoever in the health or social and economic capacity of patients. But they can manipulate the definitions and stats, and spin the results as much as they want."

    Getting really good evidence that CBT and GET are next to useless (where useless is defined as "normal 'care' from CFS specialist centres in the UK"), and getting this evidence direct from the proponents of CBT/GET themselves...even this is not new. I fear we may be naive to place our hopes for any enlightened change in policy on an understanding of the science (assuming of course that we accept that this paper is science, and its authors are scientists - which personally I do not).

    Just as journalists worthy of the name apply a sceptical attitude and strive to dig beneath the surface of claims made by those with vested interests, scientists worthy of the name do not twist and manipulate their own science, move the goalposts halfway through, and manipulate the media in order to convey a message in support of political goals.

    When I see behaviour such as that observed in the PACE trial - the grossest of many examples being the decision to stop using actometer data halfway through because that data would have proved the purported benefits of the therapies to be illusory - then I am reluctantly compelled to observe that the clearest evidence-based conclusion I can reach from this study is that its authors are fraudulent, and that their aim is deception, in pursuance of their own interests, their own prejudice, and their own hidden agendas.

    And just as when I learned that the UK's Science Media Centre - whose job it is to 'help' the British press to put published science in its proper context - is run by a group of former revolutionary communists with a publicly stated agenda of defending science itself by suppressing information about the victims of scientific progress (see LobbyWatch, Martin J. Walker, and the history of Living Marxism magazine and its online reincarnation Spiked)...and when I learned that the SMC advisor to the media in areas relevant to us is one Simon Wessely...I find myself wondering whether those of us who believe in science can afford to trust that what our newspapers call 'science' still deserves that name in a world where the dominance of insanely powerful financial vested interests distorts the playing field so severely.

    I would like to simply take the paper at face value, as Cort has done, and celebrate what the paper actually proves: that CBT/GET delivers an almost-negligible benefit to a small proportion of people wrongly diagnosed with ME/CFS, and that the UK's "specialist care centres for CFS" are even less effective than CBT and GET at delivering benefits to UK patients.

    But when the paper's authors have redefined a disease themselves in such a way as to exclude people suffering from the disease and include people who do not have any of the major symptoms of the disease; when they have manipulated their protocol to remove the physical evidence which would have shown that their findings were an illusion; when they have defined 'normal treatment' as the treatment available at specialist centres shunned by most people with ME/CFS; when they have invented their own concept of 'pacing' to mean something that is nothing like 'pacing' and then used this study to claim that pacing doesn't work; when they have re-defined recovery and meaningful effects halfway through their study; when they have used the most fatigued 15% of patients seen in GPs' surgeries to define a 'normal' level of fatigue; and when they are psychologists who have performed all their analysis using their own questionnaires which they are masters at manipulating in ways that I cannot hope to unravel...when they do all these things, the fact that they still can't deliver more than a tiny improvement in those questionnaire scores they decide to publish seems to me far less significant evidence than the abundant evidence that the study's authors are frauds and charlatans.

    Is CBT an effective treatment for some people diagnosed with ME/CFS? It seems totally unreasonable to most people to question that these therapies can be helpful to some people. "Nobody is claiming it cures you," they cry, "but there is plenty of evidence that it helps some people, and it's the best we've got - so why on earth are you so implacably opposed to something that might help you?"

    I am opposed to it because it was no help whatsoever to me: talk therapy was as harmful to me in relation to my mystery illness as it was helpful for coping with and then overcoming clinical depression. I am resistant to accepting that CBT is a useful option because the evidence only shows that a small proportion of people with my illness tick boxes on questionnaires to say that they thought it helped a tiny bit. I am sceptical as to whether it really does help people because the only evidence I've seen regarding whether it really is helpful (the Dutch study) shows that although people reported an increase in their physical activity, the suppressed actometer data reveals that their physical activity had not increased.

    So I am reluctant to give ground and accept that there is a role for therapies like CBT in managing chronic illness because it seems crystal clear to me from all the available evidence that what these therapies achieve is simply to persuade people to con themselves into believing they are a little bit better...or perhaps even less than that: CBT can reprogram patients who are asked "How do you feel?" such that they are more likely to say "Fine, thank you".

    I am not into self-delusion: most people might not make this choice, but I want the truth, whether it makes me feel happy or not. I don't want to be reprogrammed so as to imagine that my problem is less serious than it is, reprogrammed to accept my illness, reprogrammed to tell everybody that the reprogramming was helpful to me. Reprogramming myself to help myself escape the spiral of depression is one thing; reprogramming myself to deceive myself about my physical illness is quite another.

    And I don't want to be reprogrammed by people who have stated repeatedly that they don't believe the cause of my illness will ever be found; people who have blocked any attempt to investigate the physical aspects of the illness; people who have massive influence over what all the newspapers in my country say about my illness; people who are exposed as liars and frauds to anyone who has eyes to see and a heart to care.

    And I don't think I would serve my fellow men and women well by accepting this tactical retreat and conceding that there is a place for these charlatans in the therapeutic process, most especially at a time when they are poised to roll out a massive expansion of their services in place of genuine medical services and in place of genuine medical research. I think I would be remiss in my moral responsibility if I put to one side what I have learned about the methods of these crooks as a tactical measure in order to gain wider credibility.

    Positive thinking is a very popular philosophy. "You can do anything you want if you put your mind to it" is a lie heard all too often, and one that people who favour truth rather than self-interest cannot accept. The corrolary - "You failed because you didn't try hard enough" - is an insidious consequence. Such philosophies based on self-deception are in the interests of the haves who need to believe they deserve their good fortune, and they play into the hands of those who wish to blame and punish "have nots" for not having anything.

    So I will want to be clear in future, if I am going to accept that there is a place for CBT in the management of chronic illness. I will want to offer advice about the subject that is rational and evidence-based whilst respecting the right of the individual to make their own decision - like this:

    "There is some limited evidence that a small proportion of people with chronic illnesses who undergo CBT say afterwards that they believe that it helped them. In the case of ME/CFS there is very little evidence as to whether these improvements they believe in are real or illusory, but what little evidence there is suggests that patients are more likely to say that the CBT increased their activity levels even though objective measurements show that their activity levels are unchanged.

    For what it's worth, in my personal opinion CBT does nothing but help you to deceive yourself and others that you are not as sick as you really are, and only a minority of people are capable of this self-deception and content with employing that strategy. But if you personally feel comfortable with deceiving yourself in this way in order to feel a little more positive about life, then that therapy - unlike the more effective treatments that researchers refuse to study and are in the process of making illegal - is freely and widely available to you in the UK. Since you pay for the availability of that treatment through your taxes whether you like it or not, it is entirely up to you to decide what you want to do."

    What have we learned about ME/CFS from the 5m PACE trial? Nothing that we didn't know before: CBT/GET are crap treatments that only deliver small imaginary benefits; the UK's "specialist treatment centres" are even worse and are rightly shunned; psychologists are allowed to continuously move any and all goalposts and define "pacing" as "not pacing" and use that sleight of hand to claim that pacing doesn't work; and more research is desperately needed.

    Real research, though. By honest people, and by scientists next time, please.
  8. urbantravels

    urbantravels disjecta membra

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    **sustained applause**
  9. Never mind the poor results and the spin - the researchers got what they wanted, the pre-ordained result that CBT and GET were the best available current treatments for "ME/CFS" patients. This was necessary so that N.I.C.E. didn't have to rewrite their Clinical Guidelines for Doctors. And consequently the Department of Work & Pensions didn't have to alter their policies either. 5 million spent was money well spent from the Government's point of view, if it could save all that sick pay and disability benefits. Which fits the Government's unstated eugenics agenda of letting all the old & infirm people shuffle off this mortal coil a bit earlier than they should and thus saving the taxpayer lots of money in unclaimed old age pensions as well.
  10. Bob

    Bob

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    Gosh, wingfingers, what a cynic you are!
    But how accurate and insightful also!
    A big welcome to the forum!
  11. Bob

    Bob

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    Yes, I agree... Thanku Cort.

    Mark, thanks for your post... I think you just took all the frustrated thoughts out of my mind, and put them in print... I really hope that the anger in our community in response to this trial will mean that it all back fires on them... The study really does put GET and CBT in a very unfavourable light, once the data is analysed carefully.
  12. Cort

    Cort Phoenix Rising Founder

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    This won't please everybody but this is a better take on the study. I think you have to be very, very careful with 'exercise' and activity management and that, of course, is being lost in the media -which is not surprising.

    Dr. Klimas' comments put CBT in the proper context - a context I think the CFS community should be able to live with and would work for us.

    I believe our goal should be to get the rest of the world to get to where Nancy is....

    For some reason this is the first google alert I've gotten in my mailbox - this was not a bad article for them to highlight.


    http://www.emedicinehealth.com/script/main/art.asp?articlekey=126111


  13. Dolphin

    Dolphin Senior Member

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    Lots of good points in this article, Cort. It's not easy I think for people to get on top of it.

    Could you add a line under this to indicate the increase. It can look like CBT came out better but actually the change +21 is basically no different from APT +20 and SSMC +22.

    Also, you picked me up incorrectly on the actometers: it is right that they already had them from the start and that they dropped them (confirmed in the comment by Peter White et al. at: http://www.biomedcentral.com/1471-2377/7/6/comments#306608 ).

    However the point I was making about the cost was that the whole trial cost US$8m (not US$8,000) and that for such a trial, one would think they could find room for objective outcome measures, as well as the fact that they had already spent money on the actometers. Apologies if it was a bit confusing. It would be good if the $8000 comment could be taken out - I don't know how much they spent on them. But if you do that, please make sure to make clear that (i) they use actometers at the start (and so they wouldn't cost any money) (ii) initially they intended to use them but somewhere along the way, they decided to drop them (after they first applied for funding (see PACE Trial Identifier) but before the trial started proper).
  14. dkesh

    dkesh

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    I agree that it's best to acknowledge that some people diagnosed with CFS get some improvement from CBT, not just for tactical reasons, but because I believe it's true.

    But there's a real cognitive dissonance in this paper between CBT-as-treatment and the disease model behind CBT: people with CFS perpetuating their symptoms through "sickness behaviors" that CBT can correct. While the study shows CBT-as-treatment as moderately effective in some people, it really seems to smash the sickness behaviors disease model. If the sickness behaviors disease model were true, you would expect large improvements in symptoms, growing over time. Instead, you got small improvements that seem to plateau over time.

    I think that the paper would've gotten a much kinder reception over here if they had been willing to discuss this.
  15. Dolphin

    Dolphin Senior Member

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  16. Dolphin

    Dolphin Senior Member

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    Good point about exercise test.
    To recap, no difference in changes for CBT, APT and SSMC groups, just with the GET group.

    A few possibilities come to mind including :
    (i) all we have is composite figures - have some unfit (but not ME/CFS) people in there exercising and their scores could improve from improved fitness and bring up the average
    (ii) the people doing things like APT would be more interested in listening to their body - that's what they had been told to do while the GET participants had been told they couldn't harm themselves so would be more willing to push themselves during the test
    (iii) (similar to (ii)) the GET participants might be more willing to push themselves to show they had been doing their "homework".
  17. acer2000

    acer2000 Senior Member

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    Cort,

    Why don't you use this post as a basis for a letter to the editor at the NYtimes?

    http://www.nytimes.com/ref/membercenter/help/lettertoeditor.html

    Stating the numbers really makes it painfully obvious how ineffective this therapy is. Unfortunately, even the "even handed" coverage is putting a positive spin on the results. We need to let people know that if they actually read the paper, they will see the selection factors/co-morbitidies, dropout rates, and "improvements" paint a very different picture.

    The very salient point you make in your post that needs to be driven home is that:

    Even if you take this study at face value, the improvements are in line with improvements you'd expect with CBT other serious organic illnesses. What does that obviously say? It totally invalidates their initial hypothesis that CFS is a behavioral disorder that can be effectively remedied by behavioral intervention. In other words, the minimal response to CBT validates the idea that CFS is on equal footing with other serious organic illnesses that similarly benefit from CBT such as cancer, heart disease, MS, etc... Thus we should move on, stop wasting money on CBT studies, and look for the organic cause.

    Frankly, if they had been testing a pill for FDA approval, I seriously doubt it would be approved. Less than 20% improvement in a condition that causes total disability, with nearly 1/3 of the patients not completing the study, and another 1/2 having serious disqualifying psychiatric co-morbidities. No objective measurements and no placebo control arm? This is a truly poorly designed study.
  18. Dolphin

    Dolphin Senior Member

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    I'm interested in more information in this too. It doesn't sound like Peter White.
  19. acer2000

    acer2000 Senior Member

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    I'd also like to point out that the CAA should have responded to the press release of this study with the same criticism that Cort used in his post. The fact that they didn't is disturbing. Aren't they supposed to be advocating for us? The fact that they gave a "neutral" quote to the media isn't good enough. They should have been out in front of this. WTF

    Bottom line: If CFS was a behavioral problem like the UK psychs always claim it is, you would have expected a much higher improvement rate in line with the improvement seen with the use of CBT/exercise in other behavioral disorders. The fact that they didn't in damning. The actual data in this study clearly proves their whole hypothesis wrong.

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