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Lancet Editorial - Peter White & Trudie Chalder CFS: treatment without a cause

Discussion in 'General ME/CFS News' started by Dolphin, Feb 29, 2012.

  1. jeffrez

    jeffrez Senior Member

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    The study specifically mentions GET as part of regular treatment but not the web-based CBT. Whether GET was also part of the study treatment isn't really clear to me - perhaps I glossed over mention of that in the study & missed it. But from what I could gather it wasn't, and that's what can be the really dangerous part of those approaches. I doubt CBT on its own is really going to harm anyone significantly. And although some people have difficultly even getting on the computer - I've had that difficulty myself at times during crashes - I doubt that most people with CFS most of the time would find that difficult enough to impede the treatment or make them worse.

    Sorry you had a bad experience with the CBT you underwent. Apparently that wasn't web-based CBT, though, as in the study, and I'm therefore presuming that the frequency of your treatment wasn't the same, either. As we all know, one anecdotal report, as compelling as it may be, is not scientific evidence, and it appears that you didn't even have the same therapy as in the study. So I don't really think definitive conclusions can be made adequately about the web-based CBT either from your report or from other non-web based CBT report. It's not the same thing, as shown by the control group in the study being made up of standard CBT & not showing the improvement of the study group.
    Firestormm likes this.
  2. ukxmrv

    ukxmrv Senior Member

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    Mr Kite,

    When they release their next study - the one with CBT delivered in a swmming pool, and then the one after that when CBT is delivered during an aerobics class then you are going to be saying the same thing. We obviously will have no idea what is happening with these new methods if they don't tell us in full and of course as no one has any experience with them we cannot possibly comment?

    They have been doing this for years as I said, changing the name, the style etc. If the content and the messages are still the same then of course we can comment about how such similar approaches made us worse. It may be still the same product sold in different ways.

    GET doesn't even need to be included for the CBT to impart harmful messages about exercise for PWME. As in my case telling that patient that they are deconditioned and should be able to gradually increase or continue exercise could be enough.

    Even if it was totally different each PWME would need to weigh up the cost benefit analysis of each new treatment offered to them and taking into account similar approaches and their failures would make sense. The time the young person spends on the computer with the CBT could be spent having a little bit more of a social life or something important if they are at the bounds of energy/strength.

    If they are able to use a computer freely, have no resource problems, can disregard any possible harmful messages then it may not matter so much.
    Nielk likes this.
  3. jeffrez

    jeffrez Senior Member

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    So you did or you didn't have web-based CBT at the frequency mentioned in the study? It's a simple yes or no question.
  4. floydguy

    floydguy Senior Member

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    More importantly was the CBT conducted on a Macintosh or a PC? Did the computer have 2GB of Ram or 4GB or Ram. Was the browser Safari, Mozilla, Explorer or Chrome? These are all critical questions that need to be answered in assessing the efficacy of web based CBT.
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  5. jeffrez

    jeffrez Senior Member

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    Your attempt at humor is well noted, but the critical factor appears to be the amount of contact, or "dose," of the CBT, and without GET. Perhaps real-life (non-internet) CBT would have been as effective if given with the same frequency and no GET.

    Until either serious flaws are found in this study, or more studies are done that can refute this one, then the scientific approach is to accept these results, albeit maintaining a healthy skepticism. If kids recover so frequently anyway, for example, then why didn't the kids in the control group recover at a higher rate? They weren't all doing GET. It would be useful to see a similar study in adults, too, of course. But it would be foolish to simply dismiss the findings out of hand just b/c you have a preconceived notion and don't want to accept that the intervention might have helped.
    Firestormm likes this.
  6. ukxmrv

    ukxmrv Senior Member

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    I had CBT in a NHS clinic and not computer based.

    That's not the point.

    CBT with unhelpful messages and use of precious energy is still CBT regardless of the delivery method.

    If this CBT still has the same unhelpful messages then it could potentially be as damaging to young ME patients as my UK NHS CBT was to me.

    We can't keep accepting their results and keeping an open mind over and over again as they continue to dress up the same ideas, change the name or delivery method and then try to sell it again.

    No one is trying to dismiss the intervention without a critical appraisal. That appraisal for me includes comparing my experience of CBT for ME and CFS patients in Europe. I need to understand what the course of treatment was like for them so I can see if it was in anyway superior to what I went through. Potnetially young patients with ME could be harmed and that's serious. They could potentially have something to lose here.

    When the PACE study was announced people on this group spent a lot of their time examining the data and there is still data outstanding. You could have used the same argument when that was released. Some of us would like to see all the evidence first before we encourage people to go for this treatment or say that we have nothing to lose by trying it.

    It's experience not preconceived notions at play.

    Question for you please

    Are you really suggesting and giving as a credible judgement that for a ME patient G93.3 the difference between physical health recovery and sickness is that the CBT they are given is done by a therapist or through a computer?
  7. currer

    currer Senior Member

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    What interests me, however, is why children have ME in such numbers now? And why the spread of a disease into a new population group (children) is not recognised as a reason for alarm instead of as an opportunity to promote your own medical career?

    I grew up in the sixties. ME in children was unheard of then. In the early eighties, when I developed ME as an adult in my twenties, ME was known as a disease that affected adults. Now, thirty years later the medics accept, without further thought, that relatively high numbers of children suffer from ME.

    The opportunity to understand the epidemiology of this disease has been lost because of the sort of quackery evinced by the paper we are discussing.

    Incidentally, when I worked for an ME support group, I did not notice that ME in children was different from the form in adults. We had some very severe cases, wheelchair bound, lasting years.

    I remember one poor child of twelve, who became mute and wheelchair bound following intensive physiotherapy. Despite his deterioration during "treatment" the physios insisted on continuing with exercise therapy. This is why he stopped speaking. He remained wheelchair bound (which he was not prior to "treatment") but after a few years improved by beginning to speak again.

    I dont know what criteria this paper used for inclusion in its study, but possibly not one that I would recognise as ME.
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  8. charityfundraiser

    charityfundraiser Senior Member

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    Aside from the very different prognoses for children and adults with CFS in general, I think some of us would be more willing and able to try Internet CBT. First, people who are bedridden could do it instead of making themselves sick going to appointments or being insulted by the suggestion of going to appointments while bedridden. Second, the more impersonal, written, and asynchronous format might help as I think there might be less of the negative experiences with CBT in such a format such as not clicking with the therapist, being insulted, projections, personal biases, etc. A third difference was the "dosage" was about 10 times as frequent, I think, as they logged in more than once per day instead of going to a weekly appointment.

    For the last year, I've been following a blog where the author focuses on behavior change that has nothing to do with CFS. It is mainly about entrepreneurship, career, and personal finance. It has helped me maximize my physical functionality and structure my trial and errors. Behavior change methods follow the same principles whatever subject it is applied to. I was improving about 1% per year for the first 5 years with CFS from a starting point of about 1% functionality but am improving faster now. It's partly a chicken/egg scenario though. I don't follow some of the CFS CBT ideas though, like not focusing on physical symptoms. I focus on them (to figure out how to get rid of them, not to ruminate on them) and behavior change for me means something like taking Advil while I was not before because I thought it was only symptom relief and not something that would make me improve. I discovered that Advil actually produces a long-term improvement for me. Other things such as being more proactive about trying manual therapies which has ended up helping a lot. So for me, it isn't really a mind over matter type of thing, but more of a maximize the effectiveness of my trial and error.

    Anyway, it is much more pleasant than listening to the talk about CFS CBT, I think because of framing. You can address the same issue by focusing on the positive or the negative, encouraging or insulting, calling something normal or abnormal. I'd much rather use cognitive and behavioral methods to try to fight a physical disease into remission or maximize my functionality than to use it to fix abnormal illness beliefs and a supposed psychosomatic illness. The illness prognosis is normal and recovery/remission is exceptional rather than the illness prognosis is abnormal and you would recover if your mental processes were normal. If the blogger above kept telling his readers they have abnormal work performance beliefs, he probably wouldn't have very many readers, clients, or testimonials.
  9. markmc20001

    markmc20001 Guest

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    The electromagnetic fields from computers, telephones, and other devices make me sicker.

    I'm mostly housebound, so not much else to do.

    Better off getting the kids sunshine, fresh air, and yoga than sitting in front of CBT video games.

    Could also give cooking and nutritional classes. That would help CFS'ers also.
  10. Firestormm

    Firestormm Senior Member

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    Good post Currer. It was Fukuda by the way: http://www.biomedcentral.com/1471-2377/11/23 At least it was at that point. I have yet to read the full paper as published yesterday.

    Thanks for those that did post the full paper and remind me that the White/Chalder editorial comment was attached.

    I think there has been a reasonable degree of scepticism surrounding these results even in the editorial. Although this has been reported in the media as an internet based cure-aid, it does appear that the internet was only part of this and that heavy assistance was provided by trained therapists. Also that the kids' parents were given similar treatment in order to 'assist'.

    It will be interesting to learn how much all this cost I think. And - to quote from White - how efficient such an intervention delivery system would prove in the wider world. It didn't include graded exercise specifically although I dare say that it encouraged patients to increase their physical and mental exertions by overcoming their 'fear' of doing so.

    That's based on my own experiences of CBT and I have to say that to some extent I did find CBT delivered on a one-to-one basis quite useful. Then I had a lot of unhelpful crap flying around in my head at the various times I requested such assistance. But it did very little to aid any 'recovery' above and beyond that i.e. in terms of physical and cognitive limitations imposed by my condition.

    So, I think CBT has a use. Just as it does for Parkinson's patients and those with MS and cancer etc. However, I would - like Mr Kite I believe has said - be happy to give this new approach at delivery a whirl. As an adult I would be interested to see how effective it is.

    To return to your point about epidemiology for a moment Currer, I do - as you know - maintain strong reservations about the massive differences in reported prevalence for our wide-ranging condition. I think it is perfectly reasonable to question whether or not those included in this study would actually have met the - for example - Canadian Criteria.

    That study last year about the cost of CFS to the UK economy produced by Crawley also led people to believe that CFS was way beyond the 0.4% prevalence that is generally taken to be more realistic. And we have been discussing recently about just how many referrals to - more knowledgeable - 'specialists' result in alternative diagnoses.

    So, whilst I do take this study and it's reported results (as well as the cohort included) with a pinch of salt; I would still be willing to give it a whirl and report back. Just as I did when last undergoing my 13 sessions of CBT delivered conventionally with none of this 'it's all in your head' stuff.

    I still contend that this study is nothing short of a potential embarrassment to the authors of the PACE trial. Depending on how much this all cost per patient and a due comparison - if I were the MRC I would be preparing to ask some straight questions.

    And this potentially blows the claims about GET out of the water! Let's not forget that.
  11. Jenny

    Jenny Senior Member

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    I find it very difficult to evaluate any study that uses CBT when the theoretical basis of the particular intervention and the techniques used are not described. CBT has many different forms - traditional CBT evolved from behaviourist psychology and social learning theory. Ideas about conditioning (Pavlov, Skinner etc) and social modelling (Bandura) are at the heart of these. On the other hand, more recent forms of CBT tend to be more focused on the present moment, for example, mindfulness training and acceptance and commitment therapy.

    Techniques used vary a lot. For example, some emphasise focusing on symptoms and getting some relief by changing one's beliefs about their harmfulness, while others emphasise focusing on life goals, with symptom control being secondary. And emotions have a big role in some forms, while others are more about behaviour change.

    As a psychologist I've used many forms of CBT with clients. As a ME patient, I once found myself seeing a psychologist who was obsessed with getting me to do charts and diaries which linked symptoms to activities. We wasted 8 sessions doing this. As I had told him at the start, I had never been able to find any connection and still couldn't at the end. That was the CBT offering - completely useless.

    More recently, I went to mindfulness based CBT group, where most of the time was spent listening to mindfulness CDs - completely different, but still called CBT. Helpful only because you got to keep the CDs.

    We're not going to learn anything from these studies unless the theoretical rationale for the treatment and the precise techniques used are fully set out, just as papers describing drug trials have to set out the hypothesised action of the drug, and detailed treatment protocols.

    Jenny
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  12. alex3619

    alex3619 Senior Member

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    Hi Nielk, the history of psychiatry is not one of accountability. How many hundreds of thousands, when combined, had abusive treatment including lobotomies, or colon or teeth removal? To my knowledge nobody was ever brought to justice. These resulted from whacky theories of causation of mental disorders. The entire branch of psychiatry called psychosomatic medicine is almost as whacky, and described in the scientific literature as nonscience and psychobabble, yet nobody calls them on it. Don't hold your breath for justice, the most we can expect is change.

    Bye, Alex
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  13. Esther12

    Esther12 Senior Member

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    Only semi-keeping up with this thread , but

    This is one of the reasons why I would expect internet CBT for CFS to be much better than person to person. Both sides know that there is a written record of what is going on - even if the systems of accountability for psychiatry are still really weak, this accurate record of what happened serves to dramatically increase the power of patients automatically, and act as a restraint on the behaviour of therapists. One of the reasons I was surprised that CBT in PACE did so badly was that the sessions were recorded, and I expected this to mitigate the problems with CBT, while allowing any benefits to continue.
  14. CBS

    CBS Senior Member

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    No such thing as a rigorous study with inadequate inclusion criteria. The two are antithetical. End of story.
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  15. Sam Carter

    Sam Carter Guest

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    When an experiment finds apparently supra-luminal neutrinos a good scientist will hunt around for loose cables before tearing up special relativity.

    Similarly, when it is suggested that web-based CBT can restore "normal physical function" to 78% of adolescents with chronic fatigue syndrome one should suspect a methodological / reporting error rather than a genuine finding *because it disagrees with all previous studies*, even those performed by psychosocial-hardliners like Peter White.
  16. Nielk

    Nielk

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    It's pretty shocking isn't it? Crimes committed in the name of "Science". What about the Hippocratic Oath-"First do no harm".
    What about the Pharmaceutical companies spewing forth Benzo medicines like it's water with advertisements of models skipping through meadows on a spring day with a smile on their lips. Do they warn you that once you start on these, you are marked for life? There is no way out? You damage your brain? How is it that they can get away with it?
  17. Bob

    Bob

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    Unfortunately, in actual reality, that isn't the scientific method when it comes to psychological treatments for CFS/ME. The PACE Trial has widely been reported as achieving a "30% recovery" rate, but on close inspection we discovered that these results are fatally flawed, incorrect, and misreported. In fact, there was only approx a 13% response rate (a minimum improvement or more, not a "recovery" rate) for CBT or GET, and even this is highly questionable because of the questionable methodology of the study, including the way a "clinically useful" outcome was defined. Also, the actual results are probably even worse when applied to the whole ME patient population because the PACE Trial excluded house-bound and bed-bound patients. But the newspaper headlines reported things along the lines of "ME patients should exercise to the max for best chances of a recovery". Even though the PACE Trial reported that CBT is a "safe" (i.e. 'harmless') therapy, it would be misleading to state that CBT is harmless. The PACE Trial results only apply to a subsection of the CFS/ME patient population, so the results (i.e. that CBT is a 'safe' therapy) cannot be extrapolated to the whole patient population. Also, seeing as many patients report being harmed by CBT in patient surveys, then it doesn't seem sensible to state that CBT is harmless.

    There are so many variables in this new FITNET study, that until it is analysed closely, then it shouldn't be taken at face value.
    I haven't had time to analyse it yet, so I've used the PACE Trial as an example of why we can't take things at face value.


    The control group were doing GET, CBT and rehabilitation therapy.
    So that may well explain why the control group did so badly. If these therapies aren't administered sensitively to the needs of ME patients, then there may well have been a negative reaction to some or all of the interventions.
    As with the PACE Trial, I think they should have included relaxation training sessions for a control group. This seems to me like it's a sensible control group to use for ME patients.
    There might also be many other factors in the FITNET study that we aren't aware of yet.


    I don't think that's what's going on here Mr Kite.
    I think it's a case of being deeply skeptical, based on many past experiences.

    Personally, I think it's dangerous to just accept a study like this without deep skepticism and analysis.
    To accept the unlikely notion that CBT 'cures' CFS/ME patients, based on one study that hasn't been properly analysed, is dangerous.
    It could be dangerous to those patients being treated (or patients who might be treated in the future based on these results), and it is also more propaganda for psychiatrists that ME is propagated by a maladaptive fear of exercise, and that therefore no funding for the investigation of biomedical causes is needed. In the comment by White and Chalder, they have more or less said that already... Along the lines of: "it doesn't matter what the cause is, as long as we have an effective psychological treatment".


    I question that CBT is harmless for children or adolescents. It depends on what form that CBT takes.
    If it is a sensible, sensitive and caring form of CBT based on the medical reality of ME, and not on some ideologically-based invented theory about a psychological fear of exercise, then it might be benign.
    But if children are told that they have faulty thinking, that their symptoms aren't real, that their feelings do not have any importance or validity, or if there is a suggestion that they are being malingerers or liars, then I think this could lead to all sorts of long-term psychological damage.
    Children need support, and validation of their experiences, not undermining.
    I'd have to have detailed knowledge of the CBT course before I could come to a conclusion about whether it is harmless or not.
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  18. Esther12

    Esther12 Senior Member

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    Yeah - if CBT is performed as part of a quest for truth and clarity of thought, then I would have thought it could be of some use to almost everyone.

    When it is performed pragmatically, in order to promote certain beliefs which are thought to correlate with functionality, then it's almost always repulsive quackery imo. Medicalising the cognitions of others is a really big step, and should only be when there's really compelling evidence that the patient's cognitions are distorted/unreasonable/false. With CBT and CFS, it's often the other way round, with therapists promoting the notion that CFS is the result of deconditioning or a fear of exercise, and that recovery is under the patient's personal control, despite the growing evidence that this is not true. That no-one has been fired, or faced disciplinary consequences for this prolonged institutionalised disinterest in reality is pretty sickening to me, and would make it difficult to imagine ever being able to use any CBT-type services from the NHS.
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  19. jeffrez

    jeffrez Senior Member

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    That is precisely the point. The study group got computer based CBT, those in the control group got the "usual" treatments, including non-computer based CBT. What you're saying actually backs up the study findings: non-computer based CBT wasn't very effective.



    Again, you don't know that.
    There could be different psychodynamic aspects at work whether the CBT is done face to face or through a computer that could cause web CBT to be effective while real life CBT to fail. Another point you keep missing is that the frequency of the web-based CBT was much greater. All those elements could be factors in the results. The findings need to be followed up and studied some more, imo, including in adults.
  20. jeffrez

    jeffrez Senior Member

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    Very good points. For a lot of people with CFS, getting up and logging onto a computer for CBT every day is not that far outside our daily routine anyway. It is much less stressful and physically taxing than having to go to an actual appointment, and everything that attends that. Something as simple as that could make all the difference in success or failure, b/c for a lot of people w/ CFS I think there's almost an built-in aversion to having to go almost anywhere. We all know that any amount of exertion could make us worse - maybe even seriously. Being able to do everything from home from your PC takes a lot of the pressure off - and in many cases a lot of the resistance, too.

    Good point also on following what is useful in the CBT and forgetting the rest, and thanks for that description of your other CBT experience. It's interesting, especially to hear that the improvement is going faster the longer you've been doing it. Maybe it takes a while w/CBT to start hitting your stride, as it were, and traditional CBT simply hasn't been intensive enough to reach that take off point. The increased frequency of the web-based CBT might be what's making the difference.

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