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Cognitive Therapy

Discussion in 'General ME/CFS News' started by Yungas, Sep 29, 2011.

  1. Esther12

    Esther12 Senior Member

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    I wouldn't be surprised if things have radically changed.

    What really disgusts me is that there's been no accountability - the same quacks who had spent a decade lying to and abusing patients are now slipping in to a more reasonable approach to CFS, and wondering why it is that so many patients hate them: "It's probably their naive Cartesian dualism."

    If they are now starting to view CBT for CFS in the way CBT for MS is viewed, I'd actually be irritated that they didn't stick to their quackery, and let us revel in the absurdity of it for a little longer. Until there's been a fairly radical over-hall, and a number of key people fired, there's no way I could trust them enough to try therapies that may now be of some use.

    I also think it is possible they they are being dishonest in the way they present their approach to CBT, and that really, little has changed.
    LazyLizard, being and Bob like this.
  2. Bob

    Bob

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    Yes, that's exactly right. I'm absolutely certain that 'total rest' prevents me having a relapse when I think I'm vulnerable to one, and it helps me come out of a relapse.

    Have a look in the Treatment section - there's lots of discussions there:
    http://forums.phoenixrising.me/forumdisplay.php?1-Treatment-and-Therapy

    And the Lifestyle Management section:
    http://forums.phoenixrising.me/forumdisplay.php?33-Lifestyle-Management

    For me personally, my brain doesn't need so much intensive resting unless I'm at rock bottom, but it's on a permanent go-slow anyway.
    So I can watch TV & films, listen to music, listen to radio etc.
    And I can use the computer if my brain is working and I feel well enough to sit up.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Well, it sounds like they are giving Astrocyte good help, at least so far. What I am fighting for is for patients to be helped and not abused and it sounds like there is at least some improvement (I think i will reserve judgment on this until Astrocyte goes thru the whole course and reports back). I am/will be happy to the extent that there is improvement.

    They aren't doing this out of the goodness of their hearts. These guys (white and wessely etc) are smart and understand they have to be more moderate now to lessen the evidence which will self-incriminate. But this is exactly what we want and the whole point of protesting and shining a spotlight on their crimes.
    Bob and Enid like this.
  4. orion

    orion Senior Member

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    Hi Astrocyte, I hope you don't take this the wrong way, but I think you're being a little naive.

    I don't doubt for one minute that many CBT therapists are perfectly nice people who are genuinely trying to help their patients. It's also very tempting to think that CBT is basically harmless, I've got nothing to lose, so what the hell I'll give it a try. But you have to look at the big picture.

    The problems with the ME clinics in the UK are as follows:

    1. They have a deliberate policy of carrying out the bare minimum of tests. Try asking your therapist for anything more sophisticated than a standard NHS blood count and see how far you get.

    2. In only offering CBT and GET they are denying patients genuine choice. The attitude you'll encounter is basically "my way or the highway" (and in some cases possible loss of benefits). Try asking your therapist for any treatment other that CBT and GET and see how far you get.

    3. The doctors running these clinics are, in most cases, not making a genuine attempt to try and discover the underlying biochemical basis of our illness. That's because most of them think they already have the answers. Even the open minded ones mostly lack the necessary expertise to make a useful contribution to the research effort. We need virologists, immunologists etc. researching our illness not shrinks.

    4. They are sucking resources away from other more promising areas of research.

    5. They have created (and help to maintain) a climate in which a large section of the medical profession and society at large view ME as primarily a psychological disorder. Don't believe all the BS about them believing that ME is a genuine illness. What they really mean is that they believe it's a genuine psychological illness with perhaps a small physical component.

    The problem is that simply by attending these clinics, you're giving the doctors running them, and the treatments they're offering, credibility that they simply don't deserve. And as others have already pointed out, you run the risk of having a psychiatric label pinned on you. Bear in mind that you have no real control over what goes on your medical records (another pet gripe of mine). The only sure fire way to avoid a psychiatric diagnosis is to refuse to be referred to a psychiatrist.

    And please, I implore you, don't give them positive feedback just because you like the therapist or feel that she is sympathetic (even though that may be true). There is too much at stake here to worry about hurting their feelings. They should only be given positive feedback if your underlying medical condition has definitely improved, and the improvement has been sustained for a reasonable period of time (i.e. it's not just a placebo response). Wessely and White are not selling CBT as a counselling service, they're selling it as a potential cure. It should therefore be judged on that basis, and that basis alone.
  5. Astrocyte

    Astrocyte

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    I haven't been abused... though you never know my luck. ;) My impression is that the therapy so far is actually straight forward but I'll see. If its rubbish or they're being dishonest it will become fairly obvious I imagine. At which point I'll just turn a deafen or say this is not for me.

    Trust is a huge issue of course and something the clinics should be more aware of. I refused CBT for two years cos I thought the psychologist would be forcing the 'your illness beliefs are wrong' but nothing so far, neither obvious or sneaky.
    oceanblue likes this.
  6. Astrocyte

    Astrocyte

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    If you knew me, you wouldn't think that.

    Yep, agreed. Very important to look at the big picture. But also important to view the big picture from a number of perspectives.

    I think they do slightly more than standard
    From the BACME site. http://www.bacme.info/aboutcfsme/
    A number of simple laboratory investigations are suggested to exclude other potential diagnoses and these include:

    * full blood count
    * creatinine, urea and electrolytes
    * thyroid and liver function tests
    * ESR and CRP
    * blood glucose
    * urinalysis
    * serum calcium
    * CPK
    * coeliac screen

    but I'd like to see cortisol as a matter of course. And I was referred to a rheumatologist re hypermobility, also had 24 hr bp monitor.
    Question 1 What tests do you think they should run?

    I opted for Pacing. Did that for a good few months but what pacing I have done with the psychologist has been far more useful. I declined CBT for two years. I declined GET as there is no physiological basis for the de-conditioning model. No-one forced me.
    With regards benefits, (which I am on) I was going through a DWP appeal (very stressful) and my doctors letters had been ignored, hence withdrawal of benefits. It was my assessment letter from Barts, specifically Peter White, that turned things around and I won the appeal.


    Both White and Maurice Murphy (co-lead) have made it clear they don't know the answers. But of course we need good quality researchers from many fields including endocrinology, systems biology, immunology to join the field. I think there is more of an attempt to understand the underlying biology but its not good enough. Equally I know that
    a large scale study proposal, initiated by Barts but including Kerr and an Oxford uni man was rejected by the MRC just this year. It would have looked at SNPS (single nucleotide polymorphisms) in people with ME.

    Were sucking resources. PACE has done us all a favour. Just one week after its publication 1.5 million quid has been ring-fenced for bio research by the PACE funders. That says a huge amount.

    They certainly helped create this view. But I think gradually things are changing in the way people view ME. There could be more effort here though, on their part but I wouldn't lump them all together on that.

    This is from Bacme website http://www.bacme.info/aboutcfsme/
    It's pretty good I think. But no press have picked it up so most people dont know about it.

    Well I'm happy to give them credibility if they help. Though I'd like to see a much bigger biological aspect obviously. RE medical records. Yes, this is always a concern. I get copied into all letters that go to and from Barts and keep a fairly regular check on my medical notes at the GP surgery. GP's seem much more open to this these days. The psychiatrist didn't give me a psychiatric diagnosis. He diagnosed CFS and POTs and referred to a rheumo who diagnosed EDS type III. Barts cFS/ME clinic do not treat primary depression and anxiety (about 40% of referrals) which they refer elsewhere.

    What makes you think I havent filled in one of those forms already? Hurting feelings? You're very funny orion. I have and will continue to give feedback based on what I experience. Nobody at Barts has ever suggested they are offering a cure. The psychologist was very clear that the integrated therapy she was offering was/is not a cure. So I will judge it on the basis that it is offered and that's all, namely as a means of helping to manage a near impossibly difficult illness.
  7. Esther12

    Esther12 Senior Member

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    I'm pleased to hear that you haven't been mistreated!.. but many patients have.

    I do not think that those taking a psychosocial approach to CFS are interested in regaining the trust of patients, as that would require that they be held accountable for the past problems which they have caused - much easier to just pretend that any distrust is entirely the result of unreasonable patients stigmatising mental health issues.

    You've been linking to things from BACME - but Esther Crawley has just released a paper claiming that PACE shows that CBT/GET leads to the recovery of 30-40% of patients. So long as people like that continue you to be operating in positions of authority with CFS, informed patients will not be able to trust those involved with CFS in the UK - there are too many liars, and many of us have been badly burnt by trusting their claims early on in our illnesses. Anyone with any genuine concern about the psychosocial problems faced by patients with CFS would recognise that this sort of manipulative quackery should not be tolerated, and those responsible stripped of their authority over patients.

    Even if some are now trying to present themselves in a more reasonable manner (at least when in front of patients), they have never apologised for their own earlier claims, or the harm that they have done. The dishonesty the continues to surround PACE would seem to indicate that they have little interest in making amends.

    It was good that your EDS diagnosis was picked up, and that should mean you are treated more fairly than most - but many with EDS have gone undiagnosed precisely because their symptoms of fatigue or pain were being viewed according to the psychosocial approach to CFS/FMS!

    I'm pleased to hear that you are finding aspects of your own treatment helpful, and wish you all the best with that, but I bet you could have gone through a book of Jon Kabat-Zinn's on your own (I have).

    Good luck with everything, and I hope your symptoms continue to improve.
    justinreilly, Enid and being like this.
  8. Hope123

    Hope123 Senior Member

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    The main difference between pacing and GET/ CBT-activity-based programs is that in the former, one is told to gauge one's activity based on one's symptoms whereas in the latter, one is told to maintain or increase activity despite new or worsening symptoms.

    Astrocyte, I would be interested in hearing from you as you get along with the program and you or your therapist increases your activity what the clinic's response is if you get symptoms and/or find that you can't go beyond a ceiling of activity without symptoms. Will they tell you to listen to your body or to continue pushing? That's where the rubber hits the road.

    It should also be noted, that even if you improve that your situation might not apply to many folks on this site. In the CBT literature outside that of ME/ CFS (CBT for other chronic illnesses, cancer, etc.), practitioners have noted that CBT only works for some patients, for example those with negative cognitions in the first place, and as mentioned before, should be optional and not mandatory. Furthermore, there have been studies that ME/ CFS patients without immune function abnormalities tend to do better with activity increase or exercise vs. those with immune abnormalities.

    One example of an immune function abnormality is is low natural killer cell function; this is a test I doubt the NHS will allow you to have although the top experts in ME/ CFS in the US often test for it to confirm a diagnosis of ME/ CFS. Another though would be herpesvirus titers -- some people do respond well to antiviral treatment, including long-term remission. This isn't just stuff pulled off any old website -- it's from articles in scientific journals but I doubt you will find them discussed or talked about on NHS sites. If they are on it, please refer me to them as I'd like to hear their opinion.
    justinreilly, Enid and Dolphin like this.
  9. max

    max *****

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    Astrocyte
    ............ "So I will judge it on the basis that it is offered and that's all, namely as a means of managing a difficult illness".

    Gut feelings bother me and my gut is giving me feelings (not the curry I had for my evening meal) ............ so, this CBT thing ......... its not a 'treatment' then? How come St Barts are not in front of the GMC? Surely they are pandering to ME patients incorrect illness beliefs if they are not inflicting this 'management' as a cure 'a la PACE' (PACE is evidence based apparently)


    And, Mr White got your benefits sorted ......really? ATOS and Mr White, interesting,....... do you still get your benefits if you leave your management program? Do you travel by public transport to Barts? Do you answer questions? Can you walk more than 50m? And all it took to get your benefits was a nudge nudge wink wink from Mr White, wow nice one, I must have got him all wrong then. We all make mistakes sorry, most of us make mistakes, Mr White, Mr Sharpe and Mr Wessely dont of course. Their shared belief (for the last 20years) that the only treatment ME patients require to get them back to work is a dose of CBT and GET does that no longer stand?

    Until every psychiatrist, psychologist, physiotherapist, GP, virologist, rheumatologist, neurologist, immunologist, epidemiologist, aetiologist, every other ologist, nurse, MP, neighbour, relative, work colleague, media owner, journalist, TV presenter, ex athlete with burn out, in other words, until everyone has access to a balanced view with full uncensored information at their disposal, you are wasting your time and prolonging the farce that ME representation has become the damage done will take a generation to dissipate even when the cause is discovered, we will still experience doubt from those that have profited at the expense of patients namely, amongst others, the nice people at St Barts. I believe it was that establishment that went to the MRC for funding back in 88 a Mr White if memory serves personally, it would take a horse tranquilizer to get me within spitting distance.


    Does Mr White read this forum? How does Mr White square his beliefs against the evidence that disagrees with him?
    Astrocyte, I dont have ME, I only have to witness the results of ME. My experience of living along side this illness for the last 15years has been made so very much worse because of the likes of Mr White, Mr Sharpe and Mr Wessely.
    Next time you visit Mr White, get yourself a T-shirt with Justice has no expiry date written across the front in big red letters.
    LazyLizard and Enid like this.
  10. Enid

    Enid Senior Member

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    I must agree with the arguments put forward by justin, orion, esther, hope and max. I've never had CBT/Pacing/GET - what was offered in these parts was only CBT or nothing 8 years ago and forced on participants with a "now you must accept you are depressed" start off. Needless to say causing much distress to those who had to attend at the risk of losing benefits if not. Full testing (as indicated by those members here lucky enough) to address pathologies and effective treatment - the true and only way forward in the complex and profound dysfunction of the Neuro, Immuno and Endocrine systems- no place for Psyches.
  11. Astrocyte

    Astrocyte

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    Hi Max
    So sorry about the wording here. I was just too darn knackered to edit last night and had no intention of minimizing this illness or causing offense. I've edited for the sake of accuracy. And I really do understand how bad this illness can get. It now reads "namely as a means of helping to manage a near impossibly difficult illness." But of course that gives only a hint of what we go through and it would be a fine thing to be able to edit out our ceaseless struggle. You might not believe me if I say I really feel for you and your suffering and that of the person with ME who is living along side you, but please believe me, I really do.
  12. max

    max *****

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    Is it ok if I respond later as my gut feeling has got worse.

    :thumbsup:
  13. max

    max *****

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    Astrocyte - (by the way, that is a great ID)

    Have a look into High Frequency Trading - you'll very quickly reach the correct conclusion that to anyone with half a brain cell still operating, it is a blatent scam that takes $100m+ every trading day on the DOW, the FTSE, CAC, DAX, the NIKKEI, COMEX, you get the picture. Its right there in front of the public yet they do not see it - its been happening for years - anyway, I'm not going to waste my time or yours discussing CBT, its not worthy of the few calories I burn up with typing. CBT is a scam - it operates in front of everyone as a legitimate treatment reccommndation from shrinks - it is a SCAM.

    Take a look at the Norwegians! Ask Mr White about it and don't forget your T shirt (and, ...... REALLY BIG RED LETTERS, CAPITAL LETTERS ....... WITH AN EXCLAMATION MARK AT THE END)

    Like this

    "JUSTICE HAS NO EXPIRY DATE!"

    Actually, don't bother with the ! - it looks cheap, just do the

    "JUSTICE HAS NO EXPIRY DATE"

    I make no apology for my cynicism, nor my written condemnation of the Wessely school and their approach to 'treatment'. And I hope you do really understand.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Astrocyte,

    I looked at the BACME site briefly and it was much better than i expected, though it does have a ways to go, imo, as it recommends GET, for example.

    I would guess that the fact that you have been diagnosed with what they consider an organic illness, EDS, means you are not treated like a hypochondriac, whereas someone who 'only' had ME, would be. I haven't heard anything else positive or neutral about White and Barts, but i would love to be surprised.

    I don't think you are contributing to oppression by going to Barts for therapies. I did a kabat-zinn based course (which i paid for). I didn't find it that helpful, but it was nice to go do it with other people (as opposed to just using the book which is lonelier), so i understand why you would go there.

    I do also suggest that you (and every other ME patient) speak out against White and the other charlatans on behalf of those with ME who are persecuted by these evil sadists. But I do understand that not every ME patient may want to (or be able to) protest, so I'm not telling you what to do.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Max,

    thank you for supporting your pwME and pwME in general!! We really need you and those other few non-sufferers who are brave enough to support pwME and challenge all the abuse!
    Wildcat likes this.
  16. Astrocyte

    Astrocyte

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    You're right about creating a balanced view. Its really important and patients and their carers have a very important role to play there.
  17. Astrocyte

    Astrocyte

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    Does jumping up and down like that help anyone but yourself? Its hardly going to endear ME patients to any of those journalists or TV documentary makers who we need on our side to help create a balanced view. Do you think ranting or big red letters will help our cause for better treatment? Nobody from the outside world will differentiate between moderate patients and irate carers. We're all the same to them. News makers will rub there hands together with glee and say 'Great story! This guy is against therapy yet look at the way he behaves!' In behaving the way you do, you are an inadvertent but very potent ally of Wessely. Well done Max. Just what we need.:thumbsup:
  18. Astrocyte

    Astrocyte

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    Personally I would prefer a wise and reasoned approach from helpful supporters ie people who would elicit a measure of respect from the majority of patients, not just from a rather insular world of forum members. On that basis we can move forward with dialogue with those who can effect change. Obviously that requires a measure of restraint. But it is possible and has been demonstrated by some sufferers on this thread, who are never the less very angry. The moment unreasonableness enters the frame we are lost and so is any cause we might fight for.
  19. Wildcat

    Wildcat Senior Member

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    Astrocyte wrote:
    PACE has done us all a favour. Just one week after its publication 1.5 million quid has been ring-fenced for bio research by the PACE funders. That says a huge amount.


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



    What it says is that in all its existence the MRC has refused to fund relevant bioresearch on Myalgic Encephalomyelitis but has had endless funds for CBT/GET studies on patient cohorts defined by fatigue of 6 months (with emphasis on illness beliefs).

    The eventual MRC 1.5 million has nothing to do with the PACE Trial. What on earth gave you the impression that it did?



    Astrocyte: Pace has done us all a favour ?????


    No favours whatsoever from PACE, Astrocyte.

    PACE wasted years of our lives, squandered 5 million of taxpayers money, was part funded by the DWP (DWP involvement was suggested by the Medical officer for the Benefits agencies at the time, ie Prof Mansel Aylward of UNUM, Peter Whites buddy.)




    There are threads here that fully analyse and deconstruct the rubbish methodology of PACE. And the near hysterical media misreporting of the PACE results did us great favours too, obviously:

    Got ME? Just get out and exersise, scientists say http://www.independent.co.uk/life-s...-out-and-exercise-say-scientists-2218377.html



    Dr Maurice Murphy has been running a 'CFS' diagnosis factory at Barts for years, doling out diagnoses of mild CFS with sleep problems to patients who have severe ME and a myriad of painful and disabling symptoms. Severely sick patients with neuro disabilities were dumped by Barts and no, didnt receive back up for desperately needed legitimate benefits, despite asking Barts doctors, who never responded.



    Barts is one of the epicentres for a wasteful and cruel policy that has caused widespread deprivation and suffering, for years.


    Do you really think that just one or two patients had bad experiences at Barts?



    Peter White put up a big argument against the use of the Canadian Consensus Criteria he says that the CCC diagnostic criteria would include too many patients with primary psychiatric conditions (!?). His fellow psychiatrists swallowed that one at their CFS conference a couple of years ago.



    Astrocyte, your relentless rose colored positive spin on Barts, Peter White and PACE just doesnt ring true. The informed majority dont agree with you.


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



    Paternal Preaching to informed adults is really not appropriate either. You come close to suggesting that its unreasonable patients who have been the obstacle all these years.

    The obstacle all these years, my friend, is Peter White and his psychiatrist friends who have guzzled the research funds and misinformed both health professionals, media and public about our disease.
    LazyLizard likes this.
  20. Wildcat

    Wildcat Senior Member

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    MRC Main site:
    http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/DoI/index.htm

    Declaration of interests for the CFS/ME Expert Group




    Peter Whites Declaration of Interests, MRC main site:
    http://www.mrc.ac.uk/Utilities/DeclarationsofInterest/MRC006493


    Professor Peter White

    Personal Remuneration (including employment, pensions, consultancies, directorships, honoraria etc.) [Please identify organisation and category e.g. Wellcome Trust (Pension)]
    Consultation work for:
    Department of Work and Pensions
    Swiss RE Re-insurance Company


    Shareholdings and Financial Interests in Companies [please see guidance notes, para 2, for thresholds]
    None


    Research Income during current session [over 50k per grant]
    3 MRC Grants
    1 Barts and London Charity Foundation


    Major academic collaborators [national and international]
    Edinburgh University
    Oxford University
    Kings College
    Royal Free Trust
    Frenchay NHS Trust, Bristol
    University of Chicago
    Centre for Disease Control, Atlanta


    Un-remunerated involvement with and membership of medical, bio-medical, pharmaceutical, healthcare provision or science or health policy/communication and similar activities/organisations
    RSM Royal Society of Medicine
    BNPA - British Neuropsychiatry Association
    ICPM The International College of Psychosomatic Medicine
    RCP - (London) (Royal College of Physicians)
    RCPsych - Royal College of Psychiatrists


    Political/pressure group associations
    None

    Any conflicts of interests that may arise out of any known immediate family [see Declaration of Interest Policy para 14 for definition of immediate family) involvement in any of the above. Please indicate which section (1-6) above applies e.g. 1. Oxford University (family)]

    None
    LazyLizard likes this.

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