Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 23, 2006.

  1. tansy

    tansy New Member

    CBT in ME/CFS -- More Information

    Eileen Marshall
    Margaret Williams
    23rd August 2006

    In our document “ME Exists: True or False?” (see Co-Cure ACT: 20th August 2006) we drew attention to recognised abnormalities in ME/CFS, one of which being the significant loss of grey matter in the brain with irreversible loss of grey cells, especially in Brodmann’s area 9, and mentioned that this may indicate major trauma to the brain.

    If such trauma to the brain exists in ME/CFS, then the chance of cognitive behavioural therapy (CBT) being effective in ME/CFS is probably zero and the MRC PACE trials may be a disaster for the psychiatric lobby.

    The ME/CFS community may be interested in an article by Richard A Friedman MD in the New York Times on 27th August 2002 entitled “Behaviour: Like Drugs, Talk Therapy Can Change Brain Chemistry”.

    To quote Friedman: “New evidence suggests that the talking cure and psychotropic medication have much more in common than had been thought. In fact, both produce surprisingly similar changes in the brain”.

    Friedman refers to three brain imaging studies, one looking at obsessive–compulsive disorder and the other two other at depression, all of which showed that when patients improved, the changes in their brain, as shown on PET scans, looked the same regardless of whether they had received antidepressants or CBT.

    Quoting Friedman again: “Does that mean that antidepressants and psychotherapy are really equivalent? In a word, no”.

    Significantly Friedman (a psychiatrist who directs the Psychopharmacology Clinic at the New York Weill Cornell Medical Centre) then states: “Psychotherapy alone has been largely ineffective for diseases where there is strong evidence of structural, as well as functional, brain abnormalities. It seems that if the brain is severely disordered, then talk therapy cannot alter it”.

    As there are structural brain abnormalities documented in the ME/CFS literature since at least 1992 and as the data discussed by Friedman was known about in 2002 (the same year that the UK CMO’s Working Group Report was published), then it must be asked why this knowledge has been disregarded by the psychiatric lobby, and by the MRC who has granted such generous funding to those psychiatrists to allow them to indulge their belief that CBT is the only effective management (not treatment) regime for ME/CFS.

    As it is known that CBT cannot help those with a severely disordered brain, other acknowledged concerns about CBT assume even more importance, one being the increasing public concern that psychological therapies could be used for brain-washing (see the MRC Neuroethics Report, April 2005: Session 2 (“Altering the brain”). One of the speakers at the Workshop was Professor Michael Sharpe of Edinburgh, who spoke about the implications of psychotherapies.

    The MRC Workshop Report pointed out that a growing understanding of neurotransmission at a molecular level has allowed the design of interventions to alter specific brain functions, one such intervention being CBT: “Psychological therapies such as CBT have now been shown to alter brain function. These developments may alter our view of individuality. What are the risks of changing personality? Is cognitive enhancement acceptable to society?”

    The MRC Workshop concluded that further research is needed to determine whether such therapies are reversible, or if there are persistent adverse effects, noting: “There is already evidence that in certain situations psychotherapy can do harm”.

    Other issues of concern to patients with ME/CFS were discussed at the Workshop: “Psychological treatments also raise a number of issues about consent and coercion. How much information should patients be given about the possible effects of therapy on their brain?”

    In relation to ME/CFS, the MRC Neuroethics Workshop Report noted: “The MRC is funding the PACE trial, the largest trial of CFS/ME treatments (sic) to date. However, the trial has faced serious antagonism from some, but not all, patients groups, mainly because of concerns about the use of a ‘psychological treatment’ for a condition that is seen by many as a medical disorder”.

    Given what is already known about the inherent dangers of CBT for those with ME/CFS (especially the known effects of graded exercise as an inducer of oxidative stress and the effects of compulsory exercise on the cardiovascular problems known from the early part of the twentieth century to be an integral feature of authentic ME/CFS), on what ethical grounds can those already crushed by such a heavy illness burden as that imposed by ME/CFS be subjected --- in some cases by coercion – to a management regime that seems to have no hope of beneficial results?

    This raises once again the disturbing question: in whose best interests is medical science undertaken?

  2. kholmes

    kholmes New Member

    Useful article. In the States, many doctors resort to the same old suggestion: CBT and graded exercise therapy.
    I had a doctor do this recently, even though I am severely disabled with CFS. This would be a good article to show her.

    How long must we fight against ineffective and even potentially harmful therapies (i.e. graded exercise) for severe ME/CFS?

    Can I make a suggestion? It would be really helpful if you prefaced the great articles you post with a sentence or two about the gist or main point of the article, or what you found interesting about them. I make an effort to read many ME/CFS articles, but sometimes my brain is just too tired to make sense of them or even find the main point, but I still want to skim them and know what they are about. I greatly value the information in your posts.

    Much thanks.

    [This Message was Edited on 08/23/2006]
  3. deliarose

    deliarose New Member

    I dont' want to impose.. but wondered if I could chat with you sometime ....

    You seem to have been at this a long time. I would also like to hear your take on the whole Yasko thing.

  4. Gilly26

    Gilly26 New Member

    Hi Tansy

    It really winds me up how psychiatry has kidnapped this illness and the "all in your head thing" has done a great deal of damage to people with these illnesses. Thank u for the post. Are u in the UK I am and live in yorkshire. It would be great to hear from u I have ME/FM and i would find it really helpful if we could swap notes and experience I am pretty new to these illnesses (2yrs) and am having a pretty rough ride.

    Hope to hear from u

    take care

  5. tansy

    tansy New Member


    Good suggestion.

    I have a lot on, some with short time limits, which still throw me somewhat. After that I am spending a week away for the first time in many years. Once things settle down I will endeavour to give an introduction to articles I post if I think it’s necessary.

    I too have a background in education that I think has helped; I seem to have ended up practicing what I taught. Repetition, and the same info presented in different ways, seems to help me unless I am having especially bad brain days. I read the debates on different message boards, sometimes many times over, eventually stuff starts to sink in or make some sense.

    These DDs make sequencing and connections difficult. When I studied nutrition (89 –91) we were introduced to mind mapping; it’s hard going to start with, but I find it can help my own often-chaotic brain.


    I am beginning to understand Dr Yasko’s work a bit better; so yes I am happy to discuss this with you, two fogged brains work better than one. All I ask is that you be patient with me: once I have the time (and mental energy) to spare then I think we, and others here, should explore the genetic links further. The genetic factors being identified can be helped by OTC supps and alternatives, making them accessible to everyone.

    Without the testing it’s a matter of watching to see how others' results go; I’ve already had many light bulb moments. More recently I have concentrated on familial inherited/genetic factors and that had already led me to approaching things in a different way, including some of the main supps Dr Yasko recommends.


    I am sorry you are having a rough ride; things aren’t good in the UK unless we believe we can be persuaded or exercised out of our sickness roles.

    There are a few good doctors who practice outside the NHS. There’s one who holds consultations in York, he has plenty of experience. There’s no guarantee he can cure you, but there’s a good chance he can help. His name is Dr Damien Downing and the appointments tel no is 01904 691591

    TC, Tansy[This Message was Edited on 08/25/2006]
  6. KelB

    KelB New Member

    I was lucky and my CBT was presented as a coping strategy. We were told point blank that it wasn't a cure, but a way of having a better quality of life with CFS.

    The NHS unit that delivered my CBT never mentioned GET or any kind of structured exercise. When someone asked about exercise (we had to prompt them - it never came up as part of the course), their advice was to take exercise if you could, but within your personal limits. If that amounted to getting out of bed and getting dressed, then leave it at that and under no circumstances to push ourselves.

    I strongly feel that this kind of CBT has made my life worth living again, but it could be just as useful for anyone else coping with a chronic or life-altering illness. I wish my mother (crippling arthritis and sciatica) could have this type of CBT, as I'm sure it would help her.

    So please don't totally dismiss CBT. If the right people deliver it in the right way, it can help.

    It's a shame that it's been hijacked by the psychologisers and used against us in most NHS organisations. Presenting it as a cure then blaming the patient when it doesn't work, is downright evil.

    And don't get me started on GET. Whoever thought that up needs to be locked in a room with half a dozen of us for half an hour...
  7. Gilly26

    Gilly26 New Member

    Hi Tansy

    Thank u for the telephone number

    Take care

  8. deliarose

    deliarose New Member

    how can we connect?
  9. tansy

    tansy New Member

    We can use the chat room to get in touch.


    Beleive it or not I am not against CBT; if patients need it then I believe it should be made available to them. The problem in the UK, and some other European countries, is the CBT offered is based upon treating hysteria ie we are not ill, need a sickness role, enjoy the secondary gains (just wish I knew what these secondary gains were ;-) and fail to take account of what makes ME and CFS worse. Consequently CBT and GET are making many patients more ill and disabled not just in the short term but in the long term too.

    KelB was lucky in that her local clinic does recognise at least some of the features of ME and CFS.

    What everyone is the US needs to be aware of is the CDC's enthusiasm for Tx in the UK; this would likely mean the CBT and GET offered (they quote Tx in the the UK) has the potential to harm rather than help. There have been too many vested interests involved; especially the insurance industry, hence the spin and rhetoric used is Wessely School speak and their rehabilitation programmes based upon functional somatic disorders.

    TC, Tansy
  10. karinaxx

    karinaxx New Member

    uff, i must have been in a really bad mood, when i wrote my former reply to CBT.
    i deleted it.

    but it still think that all this psychology stuff has too disapear from any page dealing with ME/CFIDS and if,it could be only offered as a helping tool in chronic illnesses. it does more damage than good, as it implies ME/CFIDS is a psycological illness and can be managed with this kind of tools.

    by the way, tansy, did you see the report of the Gibson ENQ. ?

    its finished and out. find it under my profile, posted it a few dasy ago.
  11. mezombie

    mezombie Member

    The International Association for Chronic Fatigue Syndrome has some very good articles on the <b>appropriate</b> use of CBT and GET. The IACFS membership consists of medical researchers and clinicians involved with ME/CFS.

    I posted on this earlier this week. You can find it under my user name.

    Maybe there's some way to bring this to the attention of NICE or others in the UK who could try to change this ridiculous advice.

    I agree, it's absolutely awful that they're doing this.

    Here's hoping for CHANGE!


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