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Psychological therapies 'only helping one in ten people'

Discussion in 'General ME/CFS News' started by Firestormm, Nov 7, 2013.

  1. Esther12

    Esther12 Senior Member

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    re Counselling: I used to be quite pro-CBT over counselling, partly because I fell for some of the claims about it being 'evidence based', but also because a CBT model of human beings and mental illness appealed more to my own youthful prejudices. Now I'm much more concerned about the potential for abuse within CBT models... but I'm still concerned that counselling assumes unwarranted expertise from therapists. A lot depends upon the expectations of patients/clients, and the information that they are given before they consent to therapy though.

    re EBManagment - I was just reading something about Buddhists being concerned about 'Mindfulness' techniques being 'scienced' up in an inappropriate way, and stripped of their moral character. What were supposed to be philosophical approaches focussed upon reducing human suffering and promoting equality and justice are being adapted to provide pliable and docile workers.

    Personally, I'm not that bothered about what is and is not science!
     
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  2. alex3619

    alex3619 Senior Member

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    The problem with science, quasi- and pseudo-science, as well as non-science, is that if its all claimed as science and evidence based, on an equal footing, it has authority. That is part of how the whole ATOS-DWP scandal in the UK is being supported, how psychobabble and BPS is supported and given authority in treating ME and CFS, and how government can claim to decide what is or is not acceptable treatments for conditions.

    EBM was supposed to give a scientific footing to these decisions. Its failing. Its failing in large part because it too frequently cannot distinguish between science and nonscience.

    This is about the basis of authority and dogma. Its about evidence and reason. Its about spin and misrepresentation of the evidence. To help debunk the nonsense claims its very important to understand what has an evidentiary and reasoned justification, and what is just spin and nonsense. Scientific process has a stronger claim to authority (in a limited sense) than the quasi-religious hypothetical medical models we often see in psychiatry. Their justification is dogma. Nothing much has changed in that respect since the Hammer of Witches. The Inquisition too had a practice of locking people up for their own good, and making them recant their views.
     
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  3. Firestormm

    Firestormm Guest

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    I was saying to Mark and Simon the other day, (think it was those two anyway!) how perhaps the improvements in patient feedback being seen in patient surveys etc. since NICE and specialist centres started rolling out the treatments, are perhaps as much to do with patients no longer expecting/hoping to be 'cured' as perhaps might once have been the case.

    You might also infer from this that practitioners are being more realistic than perhaps once they were. There will be a new patient survey from the ME Association published shortly.

    Of course, a part I believe of CBT, is 'managing expectations' and I think you can say this would include a more realistic assessment of both ME and of life with chronic illness, as well as a patient's own expectations of their abilities; and that of other peoples.

    Again, referring to my own recent experience at the ME Service in Cornwall, there were a couple of 'newbies' on the course who did expect ME to be short-term I think given their reaction (floods of tears) to being told how treatment can only really help people live with their condition, and not fix the condition itself: the condition being 'chronic'.

    I believe NICE in the Guideline refer to CBT, GET and Activity Management as both 'management strategies' and 'illness management' approaches; and I tend to agree with that.
     
  4. Valentijn

    Valentijn Activity Level: 3

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    How is GET even remotely a management strategy? It's an incredibly stupid diversion of limited resources into senseless activities at best, and a ticket to permanent deterioration at worst.

    Even if we accept that someone might want to give some ME/CFS patients coping-based CBT instead of illness-denial-based CBT, there's no excuse for GET.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Funny - I have had the opposite change in attitude. I initially thought that my illness was incurable (encouraged to do so by repeated statements to this effect in various places) but, after extensive reading of scientific papers in the last two years, I now think that I may in fact be able to cure myself through diet and supplements. If it's not a cure, there is good reason to believe that it can bring about substantial improvement.

    Personally I am glad that I have not had to endure being brainwashed by a psychiatrist of any persuasion into changing my beliefs about the illness. I prefer to listen to experts on physical illness.
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    How much longer...? :(
     
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  7. vamah

    vamah Senior Member

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    The evidence based management is something that really scares me, as I was pretty much under that sort of situation with an hmo until this year. It pretty much is used as justification for limiting tests and treatments unless they have a long track record and complete consensus in the medical community.

    Since most treatments for diseases like me/cfs are by definition new (relatively speaking) that rules out just about everything. Even diagnosis. This is why we get shoved over to psychiatry as things like anxiety and depression are established diagnosis, so who needs to find an underlying cause, right? They just are what they are.

    This is why health care reform in the US is very frightening to me. It is all about controlling costs and limiting "unnecessary" tests and so forth. I have gotten positive results on tests I was told were unnecessary, and so had to go out and pay for myself.
     
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Very very ditto!

    I would have liked someone to tell me years ago about leaky-gut treatment, and pay for my gluten-free food plus supplements, and tell me how to pace properly. Seeing the difference these have made indicates to me that I could have improved my health a long time ago if I'd had the knowledge and financial help necessary to take these steps, and I could have avoided severe exacerbations including a hospital stay, dental damage and a fracture. I could probably have earned more money and might even be in complete remission or recovery by now if I had had such help.
     
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  9. Firestormm

    Firestormm Guest

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    @MeSci You know I am tempted to say 'you simply cannot please anybody'. I remember the internet being full of 'outrage' when it was being reported that specialists in these clinics were inferring that 'exercise' could 'make people better'.

    That 'management strategies' were the equivalent of cures. That patients could 'think themselves better' etc. etc.

    In my - albeit limited local experience - it is far more realistic and personalised. It is also sensible. And in general a common-sense approach that does not make ME any different to the approaches offered e.g. someone with bowel cancer.

    Talk about managing expectations. Goes both ways I suppose: you want someone to tell you that you can 'cure' yourself through diet, and yet based on my experience, the clinicians would tell you that's not realistic, but that an appropriate diet is important.

    @Valentijn there was one lady present on my course who did feel able - without prompting but because she wanted to see if she could do it - to take the dog out for a walk 3 times a day, and decided her own goal would be to maintain and increase this exercise now that she was out of bed and had been for some time.

    It is important to note, that the management course, was for people who were not 'severe' and who could walk using aids or freely for short periods. This wasn't an entrance qualification - I know they have had people on this particular course (there were only 5 on my course in this location at the time - but they operate across Cornwall regularly) who use wheelchairs and motorised chairs.

    Even in a small group setting i.e. not wholly individual, there were parts - for me significant parts - that were not suited or needed by everyone. I am a skeptical bastard and revealed my identify as 'secret squirrel undercover reporter' and was also lambasted by the other patients for being a 'doubting thomas'.

    I do get on well with the 'staff' at my ME Service and am part of the liasion team that works with them on behalf of patients, including those - especially those - who wish to raise concerns. What is offered is not for everyone. We are all at different levels of ability and different stages of acceptance.

    For my part I wanted to see for myself what 'wickedness' these 'nasty' people were indoctrinating the patient with and so I did. Magic Medicine it ain't but then I never expected it to be. :)
     
  10. Esther12

    Esther12 Senior Member

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    I've never had any discussion with an NHS professional about prognosis for my CFS which did not involve them reassuring me that I was certain/very likely to fully recover.

    If CBT/GET is just about 'managing' an illness, then I would never have wasted my time with it, and a lot of quacks who made exaggerated claims about recovery need to get fired.

    Also, it's hard to justify NHS funding for this stuff at a time when such serious cutbacks are being made (which could well explain the dishonesty which is used to promote them).

    Most of the social difficulties I've faced as a result of my illness have been a direct result of false claims and expectations about recovery - I have no interest in seeing those who got paid to cause these problems now get paid to teach me how to manage them.

    I think I missed @Firestormm 's post from yesterday - but this just sounds ridiculous:

    Thanks for looking into this. I'd not heard anything about it.
     
    Last edited: Nov 9, 2013
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Have you forgotten all the evidence that has been presented here for the efficacy of leaky-gut treatments? Or have you not read it? Admittedly it has not been of the order of controlled clinical trials, but at least the theory makes complete scientific sense and is consistent with the experience of many people both in terms of medical history and in terms of anecdotal report. This is more than you can say for psychology-based treatments. OK, so you are talking more about management now. I had settled for management for 17 years, having not had the time to read the scientific papers that have now made so much difference to my condition by providing the information I needed to take action.

    As a scientist myself whom ME has prevented from pursuing my chosen career, I would LOVE to see well-conducted clinical trials on this line of treatment. In fact I would love to conduct it myself!

    I have been waiting a while to say this, as I didn't want to speak too soon, but I can report that I have recently survived a period of unavoidable extreme exertion and emotional stress with nothing worse than a day's moderate PEM ensuing. I had expected it to be severe, as it has been previously after such events. In 2010 such exertion and stress led to a worsening that lasted about 2 years. The worst recent period ended on 24th November, and I have continued with a degree of exertion since, sometimes more than was good for me physically but which was emotionally necessary.

    Short of some kind of miracle, which I don't believe in, I conclude that this new resilience must be due to the diet and supplements, as there was certainly little opportunity for pacing during that time.

    Why would I want to listen to clinicians anyway? They are not scientists and most know little or nothing about the science of ME! Clinicians just follow protocols, which are often many years behind scientific knowledge and often seriously flawed, as anyone who subscribes to Physician's First Watch will know.
     
  12. Simon

    Simon

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    Thanks for highlighting that paper (Enhancing recovery rates: Lessons from year one of IAPT - full text) Very appropriate title, in my view, just the emphasis is on enhancing 'rates' rather than enhancing recovery.
    Marvellous. Actually, this study has both good and bad things, and in some ways defines recovery more robustly than the PACE trial, even though it still doesn't define recovery that the man or woman in the street - or even most GPs in their surgery would recognise ie a restoration of good health.

    The bad
    See above. Plus: This study reports recovery for any patient for who was flagged as 'completing' the course and had attended at least 2 sessions (not unreasonable since the first session is meant to be assessment). The problem with this approach is that if someone deteriorates and gives up on the course after 2 sessions, their final session score is kept - whereas their actual outcome score might be way lower due deterioration at home and out of sight. If someone being treated for anxiety/depression gets worse, they may not go back because they don't think the course helps, or perhaps even because the worsening anxiety/depression itself makes them less likely to attend. Perhaps this explains why only 6.5% of patients 'reliable deteriorated'.

    The better
    1. Note they give results for both reliable improvement AND reliable deterioration, defined as the same change in the opposite direction. This PACE failed to do, and refused an FOI to release this important information. Apparently it will be published one day, but it is already 2.5 years late.

    2. Patients can't recover by taking just one small step
    How very true: PACE take note again.

    So here's the details, which actually look pretty reasonable to me. They measured anxiety and depression, using the following scales, and used something called Cronbach's-alpha (statisticians name with flair) as an error measure that improvement must exceed:

    Questionnaires (do skip)
    Depression was assessed with the 9-item Patient Health Questionnaire Depression Scale (PHQ-9:1) which ranges from 0 to 27 (high is bad) with a recommended cut-off of 10 or above for distinguishing between clinical and non-clinical populations.
    Anxiety was assessed with the 7-item Patient Health Questionnaire Generalized Anxiety Disorder Scale (GAD-7), which ranges from 0 to 21 (high is bad).

    What counts as recovery:
    Depression, PHQ-9, range from 0-27, "Recovered" <= 9 plus patients must improve by at least 6 points
    Anxiety, GAD-7, range from 0-21, "Recovered" <= 8 plus patients must improve by at least 6 points

    Note these are pretty big steps to count as improved, not one or two points on the scales.

    Patients must also be above the 'recovery' threshold on both anxiety and depression.

    [for PACE geeks only]
    I wonder how the PACE recovery rate of 22% for GET and CBT would change if they excluded those who simply stepped across the recovery threshold with mimal change? Actually, 13% of patients were the 'healthy' side of the (fatigue or function) recovery thresholds before the PACE trial started so we know there were plenty of people loitering near the recovery line.
     
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  13. alex3619

    alex3619 Senior Member

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    Psychs have been hiding their failures for way over a century. Hundreds of thousands of people have been abused, mutilated and killed.

    Medical professionals seem to have this concern, perhaps an ethical concern, that doctors should not bring the medical profession into disrepute. Much of psychiatry brings the profession into disrepute. However the single biggest factor is the century long incapacity of doctors to bring reason to much of psychiatry, and especially psychogenic psychiatry. So the vast majority of the medical profession are continually bringing the profession into disrepute.

    There are, it seems to me, two reasons why the number of medical professionals who are asking the hard questions are increasing. The most important is that its clear to many that psychiatry is expanding its definitions based on little or no actual evidence. The expansion of definitions, and the widening of definitions in the DSM is bringing this home.

    The second, for all its faults, is the rise of Evidence Based Medicine. Though EBM is badly flawed in its current format, it at least spreads the message that medicine must have evidence for what is done, and so they are increasingly aware that psychiatry generally lacks evidence. Its mostly conjecture, hypothesis and elaborate fanciful models.

    Against this we have the rise of BPS. Its an attempt to rejuvenate psychiatry, and especially psychogenic psychiatry. It starts from some fairly sound ideas, then expands them into appealing fantasy. I suspect, though history may prove me wrong, that in the short term they will gain many allies in industry and politics, but in the long term people will wake up as they fail, and fail, and fail, just as psychogenic medicine has failed. So BPS in its current form will be seen as as yet another catastrophic failure in psychiatry, bringing great harm to people just as psychogenic medicine has done throughout history.

    Yet having failed they will do what they always do: redefine things and attempt to rejuvenate the concept yet again. Like a dark phoenix it will rise from the ashes of its failure, and unless there is a culture shift in medicine the whole problem will just arise again.
     
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  14. alex3619

    alex3619 Senior Member

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    @Simon. To add to your post on recovery rates, there is the issue of how I describe a common practice in medical quackery. That is a certain percentage will recover anyway, especially in a badly diagnosed and heterogeneous group and they claim these as due to treatment.

    Controls are supposed to give perspective to this. However many are questioning choices in control groups .. .most control groups are perhaps nearly worthless in much of psychiatry.

    However an expansion of this concept has just occurred to me. We need full recovery data, patient by patient, though patient identities do need to be kept hidden.

    ME is a fluctuating condition. Given the heterogeneity of CFS, many with that diagnosis will have high fluctuation as well.

    So its not just about error rates.

    Lets suppose that a percentage who are classed as recovered get worse. Then suppose that a percentage who had not recovered improved. Long term follow-up that simply amalgamates the data may hide a highly fluctuating "recovery" rate. We need to know how stable "recovery" is, however dubious and irrational the definition of recovery, for individual patients.

    It is not clear to me that amalgamating recovery data can really do this unless its substantiated with the full data set.

    Of course there are also issues of potential bias, including medical opinion influencing the patient questionnaire response, and fluctuation at end point. Asking patients to rate themselves for the last so many weeks has been questioned as to whether or not its reliable for some time now.

    Given our memory issues, its not terribly unlike asking dementia patients if they have felt OK for the last six months. Is that reliable? Is it even ethical? What if the entire answer is based on patient attitude, and not reality? What if CBT and GET are just creating delusions in the patient groups, but delusions that the psychiatrists find acceptable?
     

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