cbt (uk) the inexplicable?!?!

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 9, 2003.

  1. tansy

    tansy New Member

    This may explain the inexplicable, please read on.

    I have been checking out some sites when I came across ME Action (not Action for ME). What a joy, an organisation has taken on the campiagning and challenging of badly informed percpetions of ME. It's going to take some wading through but what caught my eye was the info on Dr Simon Wessely (whom we all unfortunately know about)and an organisation called PRISMA.

    PRISMA stands for Providing Innovative Service Models and assessments, and claims to have developed a unique treatment programme for "hopeless" patients.

    That's us guys! We have been put in a group for all patients with medically unexplained illnesses!

    Their solution?

    You guessed it.


    Now for the juicy bit. Prof Simon Wessely is a Corporate Officer of PRISMA and member of the Supervisory Board, the latter position is higher than the board of management.

    He has never declared this outside interest.


    PRISM have listed him as world expert in the field of medically unexplained illnesses including CFS.

    One more thing, can't find the source I got this from, but it seems Prof Leslie Findley either follows the same beliefs or he is a member of PRISMA himself. His main treatment for ME/CFS is cbt!

    These "experts" have great influence over the government, department of health, and medical research council, who are making all the decisions that affect our futures.

    Now does it surprise you that the only two research programmes that have been awarded funds from the MRC involve only cbt and pacing.



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  2. dojomo

    dojomo New Member

    Happens here in the US too..... When ever I review jourmals and studies...particularly the pubmed site... most studies are psychiatric.

    When I talked with a doctor at Depaul University (psychiatric dept) that was looking for volunteers for CBT studies.... she said I would have to go down town twice a month for therapy. I told her I couldn't drive and possilbily wouldn't even be able to attend the entire study due to poor endurance. She said I can come once a month....that they would work with me.......

    I talked with her a while... I asked her if there was a high drop out rate...and she said yes..that is why they are willing to work with people to help them attend, because it seems to benefit a subset of PWC......

    I said to her.... doesn't that make your studies already FLAWED. So what you are saying is ONLY a SUBSET of PWC actually benefit from CBT... Don't you put into your calculations the amount of PWC that DROP OUT of the study....answer, NO

    I told her she was doing a disservice to PWC..because when the studies are released stating that PWC benefit from CBT....it is only a subset....THE ONES THAT CAN MAKE IT THERE!!!! Then the bedridden ones go to the doctor and are told this would help them.

    She listened intently to what I had to say....and actually the last study they released from Depaul mentioned the words A SUBSET of PWC.... That is more like it.

    You can manipulate any study to make it read what you want it to read.........

    I have to believe there is a conspiracy possibly corporate, governmental or industrial.... interests that want us labeled CRAZY.... More psychiatric studies are funded than any other......DUH.!! They are desparately trying to conseal the truth.........DJ
  3. bamboo

    bamboo New Member

    i'm ignorant of the translation for the abbreviations, and therefore, got lost in the meaning of the above. what do ME, CBT, and PWC stand for, please? thanks.
  4. tansy

    tansy New Member

    ME stands for myalgic encephalomyelitis, the original name for CFS in the UK when the diagnostic criteria was more specific.

    CBT stands for cognitive behaviour therapy. This is based on the belief that we're not really ill and that adjusting the way we percieve our illness will make us well again. it involves increased levels of activity which do not allow for good and bad days.

    Those invovled in PRISM etc believe this will make us all useful members of society again.

    If only it were that simple.

    PWC, I can't remember what that stands for but hopefully someone else will tell you.


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  5. klutzo

    klutzo New Member

    Of course CBT helps......CBT would benefit EVERYBODY. CBT teaches people to think logically about life. That is a good thing for all of us,not just those with CFS, since many of our problems, poor choices, and emotional upsets come from illogical thought processes. What a waste of money. This has nothing to do with our illness and it makes me spitting mad that this garbage continues to get attention, not to mention funding.
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  6. elaine_p

    elaine_p New Member

    PWC stands for Person with CFS

    Glad you asked the question! I had no idea what CBT was and was gonna have to ask, myself.
  7. nickname

    nickname New Member

    I'm up too late to be doing this, but had to go on that site u mentioned. Seems it's called PRISMA meaning Providing Service Models and Assessments. It is a research project funded by the European Commission Info Society Technologies (IST) Programme. Those who sit around the quote "Prisma round table" unquote, are leading experts in medical care, the insurance industry and government officals, and provide recommendations to health care policy makers. They are concerned with long term disability from the perspective of government, service providers and the insurance industry.

    This is of huge concern, because this body has been set up with the sole intention of their own self interest, and as Wessley and Findley sit on this, we as patients, are all bloody doomed. In the House of Lords, where relevant to the UK's e-government iniative, it was stated that the PRISMA findings will be taken into consideration. See what I mean nudge nudge wink wink?

    I'm going to bed.
    best wishes nickname

    PS I've just had to get up to add this piece 'cause I can't just lay there thinking about it - do u suppose this is an
    old web site that has'nt been updated since the government officially recognised m.e. as a physical organic disease process? It's my only comforting thought at the moment 'till I can read more. nickname

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  8. dojomo

    dojomo New Member

    Reform of the UK Mental Health Act (1983)

    Proposals for the reform of the Mental Health Act (4) were drawn so widely that they would give psychiatrists far greater powers to enforce compulsory psychiatric treatment upon both adults and children: proposals included provision for psychiatrists to be able to drug people (including children against the wishes of their parents) if they have "any disability or disorder of the mind or brain, whether permanent or temporary, which results in an impairment of mental functioning" (5). That seems a chillingly watertight definition.
    This reformed legislation might do away with the current safeguard which states that people can only be given treatment against their will if they show "seriously irresponsible or abnormally aggressive behaviour".

    How does this relate to ME/CFS?

    Although ME (also known as Postviral Fatigue Syndrome and as the internationally-defined CFS, which is not the same as "chronic fatigue") is formally classified as a neurological disorder at section G 93.3 of the World Health Organisation International Classification of Diseases (ICD 10), already Simon Wessely (Professor of Epidemiological and Liaison Psychiatry at King's College, London) and colleagues have spectacularly attempted to re-classifiy ME / CFS as a mental illness under section F 48 (Mental and Behavioural disorders) without such a change of classification having been approved by the World Health Assembly and thus without the sanction of the WHO: their strategic use of the WHO logo on their various websites which contain and promote their own contribution on CFS to the WHO Guide to Mental Health in Primary Care (November 2000) clearly implies WHO approval for their own re-classification of ME / CFS as a mental illness, but the WHO has confirmed that there has been no such re-classification.

    Significantly, it is these same psychiatrists who are so influential on the Chief Medical Officer's Working Group on CFS/ME, the Report of which is awaited but which is believed to recommend psychotherapy for all those with CFS/ME who are able to attend
    a hospital outpatients' department (in apparent disregard of the extensive anecdotal evidence that such regimes involving cognitive behavioural therapy and graded exercise may be harmful).

    On 4 May 2000 a letter from the Minister of State at the Department of Health (signed by John Hutton) seemed not to rule out future re-classification of ME:  concerning the reforms to the Mental Health Act he wrote: "it is highly unlikely that (CFS/ME) sufferers would qualify for detention under the Act - even if it were reclassified as a mental rather than a physical disorder".

    It is entirely possible that those suffering from such disorders would come within the framework of the Strasbourg Convention if not within the reforms of the UK Mental Health Act if these psychiatrists and their supporters are eventually successful in getting all conditions with "medically unexplained symptoms" (including ME/CFS, multiple chemical sensitivity, fibromyalgia and Gulf War syndrome) re-classified as "psychiatric" by the World Health Organisation, which they have been endeavouring to do for many years (6), claiming in the Lancet that " The inclusion in the tenth revision of the International Classification of Diseases (ICD 10) of benign myalgic encephelomyelitis…under Diseases of the Nervous System seems to represent an important moral victory for the self-help groups in the UK….neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders (and) neurasthenia would readily suffice for ME.  Applying more stringent criteria for CFS in the hope of revealing a more neurological subgroup succeeds only in strengthening the association with psychiatric disorders. We believe this latest attempt to classify fatigue syndromes will prevent many people from seeing the world as it actually is".

    In the light of the heavy emphasis on psychiatric problems by this particular group of psychiatrists --- as memorably expressed in the 1996 Joint Royal Colleges' Report on CFS and in over 200 published papers by Wessely himself---such a possibility cannot be discounted. Certainly, children and adolescents with ME/CFS are being forcibly removed from their parents and placed in psychiatric care, sometimes with the backing of a Court Order (7).

    It seems likely that these two momentous changes determine the intended direction of government policy.

    Do they explain why Professor Tony Pinching (Deputy Chair of the CMO's Working Group on CFS/ME) said at the Sounding Board Event at the Department of Health on
    7 June 2000 (apparently arranged so that invited adults might have some input into the CMO's Report) that there is no need for research into CFS/ME?

    Do they explain why despite the international evidence of compelling biomarkers of organic pathoaetiology, Wessely and colleagues appear to have carte blanche in all matters relating to ME/CFS, MCS and GWS?

    Do they explain Wessely's position on the Supervisory Board of PRISMA (the insurance company which promotes cognitive behavioural therapy for all medically unexplained symptoms)?

    Do they explain why the Linbury Trust (the family trust of the Sainsbury supermarket family: Lord Sainsbury has been Minister for Science in the present Labour government) has funded over £4 million for mainly psychiatric research on "CFS" and why the Linbury Trust has so many of those whose psychiatric research it has supported on the CMO's Working Group on CFS/ME and why the Linbury Trust is financially supporting the CMO's Working Group?

    Is it the case that "general interests" are already taking priority over those of the individual?  Are those "general interests" economically and commercially determined?

    Is it this likely direction of government policy which all along underlies the directive of denial?
  9. tansy

    tansy New Member

    I was finding it difficult to draft a letter and get the words right, your message has really helped me with that, in fact it's so good I'd like to use bits of it is that's ok with you.

    Going to send it to both city MPs, mine needs reminding, the other is more interested in ME/CFS.

    I get so fed up with all of this, they know the evidence is there but choose to ignore it.

    Years ago, when I accompanied my son to see a rheumatologist, I got a lecture on why ME was not a real illness. Well prior to that my brother had actually carried out SPECT scans on patients who'd been diagnosed by Prof Jonothan Brostoff. As you might well imagine I enjoyed telling him that. His face was a picture!

    I also got threatened with sectioning when I refused to carry on taking the high dose steroids which had a really bad affect on me, that was over 16 years ago.

    I didn't know the bit about Anthony Pinching though, that really surprised me, he's medical advisor to Action for ME as well.

    One day these docs will end up eating humble pie and that's a moment I'm really looking forward to.


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  10. pinkquartz

    pinkquartz New Member

    is this all really going to happen ?

    i know our Govt. is total c*** towards the sick and disabled but are they really going to recatagorise us ?

    Yesterday i thought it must be all about money and corruption like it usually is.
    But why do they have this ignorant and intolerant view of "unexplained" illnesses ?

    I find myself wishing that one of "them" or their loved ones would get the DD and see what they think then.!!
    But i don't want to wish this misery on anyone....but how else will they really learn, if they want to be deaf and blind to the truth.

    Tansy......i was so shocked to read that you were threatened with sectioning for refusing high dose steroids........how was this resolved ?

    Another point for me is the way ME is a bucket diagnosis.
    Its given to people who don't have ME.
    They might have another undiagmosd disease or have post viral fatigue.....which will be resolved in time. What we have is something very severe. I do get furious when people tell me that they knew someone with ME who was better after 6 months, i could scream, because I don't think this helps us to be taken seriously...then people think its our fault we didn't get better when their friend/relative did.

    Sorry i am going on a bit.....could do with therapeutically strangling certain doctors and politicians .!!

    I am not really up to writing letters to politicians just now. I have too many outstanding domestic and personal problems to deal with.

    I wanted to do more on the banned vitamins.
    I am overwhelmed.
    This much fighting all the time is exhausting.
    Surely there are other doctors in UK who won't let this happen ?

    oh dear...i am not very chilled out ....
  11. tansy

    tansy New Member

    and if you can't do anything about it now wait until you can. You have more urgent matters on hand at the moment and it's really important you concentrate on those. I'm slowly putting something together, aiming to encompass this and the threat to OTC supps in one go.

    The problem as you so correctly pointed out is the widening of the definition of ME/CFS so that Wessely and co could promote their theories.

    I'm sure it's been done before but I want local MPs to look into Wessely's role in PRISMA and question why he's been allowed to assert so much influence. Then I'll point out what that's costing us, nothing treated or properly investigated because doctors are being told it's a waste of time. My current situation puts me in a good position to do that.

    There's one thing all this is making me look forward to, the day Simon Wessely and his colleagues have to eat humble pie. It will happen somewhere along the line.

    Take care now


  12. tansy

    tansy New Member

    Dear Barb

    That's exactly what I'd intended doing, but it's going to take time. Found I can now write as I speak on my better days but stilll can't write official letters so I've decided that much of it will probably be in conversational sytle. Just can't keep blood sugar and water/salt levels up now, my hands shaking like billyo so typing and mouse control quite a challenge. Brain's got more glued again. Roll on early autumn!

    I want to use it to open up a debate and will give them the www address I found the best info on. This influence on decisions is making it hard for us all, if they then ban supps we have our only options swept away. This will be the jist of my first communications.

    Does this sound right to you? Two or more fogged brains work better than one fogged brain.


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  13. loopyloo

    loopyloo New Member

    I hope you dont mind me butting in i have ME/CFS i thought it was a desease of the Nervous system, i was seeing a Dr Paton who seamed good he gave me Amitriptyline started on a low dose and went up and up now on 100mg per night and 1500mg of Robaxin(muscle relaxant) then the doctor said he could not do any thing else for me and referred me to a phsyciatrist for cognetive therapy to help with short term memory loss and thats in september i cant remember his name steven something he said its still in this building not the (Cambell Centre) which is the mental home, but i'm really worried does this mean that i will be classed as a mental patient or not, and is it a neurelogical disease not Nervous system, and do i carry on taking the 100mg of Amitriptyline untill i see the phyciatrist (sorry cant think how to spell it).
    My son has seen a phyc since he was 7 for ADHD and CD and they are classed as mental conditions.
    sorry think i may of got a bit lost in the previous posts
    can any one help
    Loopyloo xx
  14. tansy

    tansy New Member

    one about PRISMA etc and the other about the threat to OTC supps. They will be sent off together because in a way they're related ie no treatments on NHS and no access to supps and herbs required for self treatment.

    I just feel I want them read at the same time because in my case both have the potential to prevent me improving my own situation.

    Can't wait for the weather to change. If your reactions are as bad as mine at the moment a trip to London must be impossible. Talk about bad timing.


    I've answered your message on a new post with your name on it. You have highlighted just what everyone has been saying, there's too much emphasis on CBT and seemingly none on other potentially helpful treatments.


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  15. tansy

    tansy New Member

    I'm glad you too think two letters together would work because in our cases they are related. Also as you said a lot of other people use supps and herbs to treat their conditions, in doing so they are saving the NHS money. MPs are more likely to accept this alternative because they haven't invested their careers in the belief that medicine is right and alternatives wrong.

    Yes I'd come to the conclusion that I need carbs in an energency, just being careful not to create another candida problem. Realised that in perfect conditions my blood sugar's fine, my diet is right for keeping it steady. It's just anything like heat, and the other triggers, that makes it drop suddenly. It's trying everything out during the last few days that made me realise I need to raise the level quickly then keep try to keep it up using my usual diet. Had protein meal later last night but not nightime snack, I realised if my room's hot it wasn't going to make much difference. I have a flat roof so my bedroom is too cold in winter and too hot in summer.

    Glad getting some sleep last night made you feel better today. Mine's still not great but I finally started to get more a few months back and what a difference it made.

    Have you decided whether you are going to London or not on Tuesday?


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  16. jeniwren

    jeniwren New Member

    Sounds like a whole load of bulls^*& to me.