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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. barbc56

    barbc56 Senior Member

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    ukxmrv, I appreciate the fact that you took the time to post but you haven't cited a source in even one of your above quotes. How do I know if it's only part of a document, the whole document or what? I'm not going to waste my time reading posts when there's no citation. I can tell that the video appears as nothing but propaganda and unfortunately, in my opinion this is what some of these statements are.

    Please state an opinion as an opinion and please put the original links in posts. I would hope people would expect the same from me.

    There is nothing wrong with opinion but there is a difference between opinions and facts.

    Barb C.:>)
     
  2. Firestormm

    Firestormm Guest

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    I am not a 'believer' in CBT as a means to a cure. Christ if you want proof that it isn't then look no further than moi. I have engaged and engaged and engaged. CBT and therapy will make you think about how you are managing your condition. How you think about your condition. It will challenge your perceptions and it will be and is uncomfortable - at times. It does question your attitude. It does make you squirm. And it isn't useful for everyone - just as no single drug is either. And that's the way I look at it - but to get the most out you have to engage and be open to the therapy itself. It can help. Helped me. Hasn't helped me to get back to work however and that was and is my overriding goal. Sustained employment. Period. But it has helped and I hope will continue to help in dealing with all the crap that comes along with a disability that is so poorly goddammit misunderstood :)
     
  3. Valentijn

    Valentijn Activity Level: 3

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    I can't speak for the UK, but in the Netherlands we have some of those problems.

    For example, disabled patients supposedly get wheelchairs or other mobility devices from local councils if needed. But in my city, ME patients say they have been denied even basic wheelchairs and received recommendations that they go get CBT to fix their problems instead.

    Getting a disabled parking permit is likely to be somewhere between difficult and impossible, according to my former ergotherapist.

    Medication and understanding are definitely difficult to obtain. I'm lucky to have a very smart and open-minded GP, but I've also had problems with the "fatigue" clinic that supposedly treats ME. The old doctor suggested B-vitamins and Carnitine, but he's long gone and the new one just tried antidepressants which totally messed me up while I was on them. Getting referrals for OI issues was an epic struggle, and it took me almost 12 months to get from kicking up a fuss about it to getting a tilt table test.

    The neurologist I saw was quite horrible, and after about 2 minutes of examining me said there was nothing he could do to help me. Very dismissive and disinterested attitude. He wrote a scathing letter to my GP (which she read to me) saying there is nothing a neurologist can do for ME patients.

    Benefits probably aren't a problem here, for citizens. Even if getting acknowledged as disabled were problematic, simple welfare payments sound like they're relatively easy to obtain (compared to the US) for anyone who is unemployed.

    But the general public seems pretty well-informed about ME here, probably due to recent Q-fever outbreaks affecting several thousands of people, a decent percentage of whom end up with ME. I think that's the main reason that our own rather nasty BPS groups haven't been able to make things as dismal as they are in the UK.
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    Are you talking about real CBT (designed to help you accept having a chronic illness), or CBT-for-ME (designed to help you reject that you are ill)?

    If you're talking about real CBT, then no one is disagreeing with you.

    The problem is that almost no one with ME gets that form of CBT, though the practitioner might pretend otherwise in the first few months to build up trust. We get the version that tells us we are not sick. That we must become more active. That we should become more social in order to improve. That we must avoid using mobility devices. That doctors cannot help us.

    When most ME patients say "CBT" they're talking about that crap, not about real CBT. So you may want to keep that in mind when reading our posts to understand the context, and it would be helpful if you specify that you aren't talking about ME-CBT. It might help avoid a lot of misunderstandings :hug:
     
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  5. Firestormm

    Firestormm Guest

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    Morning Val, I will agree with you on this point. Obtaining a 'blue badge' is notoriously difficult these days - but not just for people with ME I am afraid:

    or

    Both extracts taken from a rather long and potentially complex application: updated 10/2012: http://www.cornwall.gov.uk/idoc.ashx?docid=0f680a0a-ee0a-43e0-af0f-b7983a1321e8&version=-1

    So, again, this is not precluding of ME. Indeed - and I know what you are going to think - I have several friends on the committee of which I am a member who do drive and do have 'blue badges'. Whether or not they will be able to retain these badges given the general 'tightening' of requirements I do not know.

    Could I successfully apply for a 'blue badge'? Well to be honest until you asked the question - or raised the point - I had only remembered (incorrectly) that you had to have 'high rate mobility' on your DLA - and I don't. So maybe I will make an application - but I do not drive because I am more concerned about my 'mental' capacity.

    By that I mean I surrendered by car because of the 'fogginess' that prevented me - I believe - from being a careful and safe driver. Several bad incidents were necessary before I took this decision. Whilst my mobility is an issue - it is for me - the bigger challenge and bigger disability I think - the cognitive dysfunction.

    So anyway, I don't think in my experience at least I can agree that 'blue badges' are discriminated against for people with my condition - at least - in Cornwall. I am sorry though that you feel it is different where you live. From the application form though it also depends very much on the comments - I presume - that are obtained from one's medical advisors and therapists etc. who would be asked to support an application.
     
  6. Firestormm

    Firestormm Guest

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    I am talking about the CBT I have had, and the CBT that is used as part of overall care delivery to those patients in my local ME Service, Val. I believe I have said this several times now but am happy to keep it clear and as relevant as I possibly can.

    CBT is not easy. It is not comfortable - for anyone. But in the ME Service CBT is part of therapy, so you might say that the principles are used. And in our ME Service if you diagnosis is confirmed, then there is none of the 'ME is caused by psychosocial factors' meme. Psychosocial factors will and do impact on a person's quality of life - definitely - but a cause they ain't. Why do you think I have been so vociferous about retaining - fighting to retain - our service and better understand what it is people like Wessely are actually saying? :)

    Edit:

    I have no doubt that for some people psycho-social factors will be more disabling that others at various times throughout their illness. And I have no doubt that even GET (for other reasons) as well as CBT will therefore be seen as having a greater positive effect in some than in others. If CBT and GET could enable me to better live with my condition to the extent that I was e.g. able to return to sustained employment in some way, shape or form - then I would regard it as successful - but not in curing my ME. Hope that makes sense... let me know.

    Will be making an announcement about my ME Service and others that even you ;) might find hopeful in the near future by the way - am subject to an embargo at the moment unfortunately :mad:
     
  7. mobyjoby

    mobyjoby

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    Anecdotally, a friend who had been referred to our local me/cfs service had to sign that she believed there was no physical cause for her illness and, as she wouldn't and was still seeking investigations, she was told she wasn't yet ready for the service and they couldn't work with her!
    I think the same person (who was also the lead for the service) also told someone else that, as they were trying to rehabilitate people, supporting benefit applications was a conflict of interest.
    I don't have proof for either incident.
     
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  8. Firestormm

    Firestormm Guest

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    You know I said previously - Christ knows where now :) - that it would be interesting perhaps to look at CBT in other conditions? Well I happened to find this single study - first 'hit' - that I will take the time to read. It is of course only one of many and may not be relevant to the CBT MODEL that was used in what amounted to an EXPERIMENT in the PACE Trial for example:

    There will always be those who will try and treat ME as something recoverable from UNTIL such time as the so-called 'PHYSICAL' nature of the condition can be better established through science and indeed a cause is proved as being applicable to the condition as a whole and not some individuals or sub-groups of patients. But even if that is one day proven to be possible - I do not believe we will see the end of CBT or GET come to that.

    There are examples from patients and from professionals of differences in understanding and in their approach to our condition and to how it and we should be treated. That will remain to be the case regardless of what science proves in my opinion. Each of us is different. Each practitioner is different. Only through engaging productively/pro-actively/in a professional manner can we possibly hope to extend the reach and understanding that in some areas has been obtained.

    As I said before - I do have friends in other areas of the country whose experiences in ME Clinics are not reflective of my own in any way, shape or form. I am not immune to this by any means. And yes, I do believe that a clear acknowledgement of the seriousness of our condition (as has happened) in the PACE Manual would have been preferable - but I have an inherent bias here as I am a patient.

    And I need to read the participant's manual for CBT in PACE to better try and appreciate how it was explained.
     
  9. beaker

    beaker CFS/ME 1986

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    Thank you for your apology : ) glad you understand what I was trying to get across. communication can sometimes get jumbled in our mis firing brains and on the whole internet lack of face to face thing. cheers !
     
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  10. maryb

    maryb iherb code TAK122

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    Only with an acceptance that ME is a serious physical illness will we get the treatment we need. All the services in the world are only a sticking plaster for a wound of unknown origin that isn't healing.
    GP's in this country will do tests as symptoms arise - I get palpitations, my BP goes from 99 - 160, heart monitor shows iregular heartbeat and I feel like death, (I take it on feeling ill, not the other way round) go the doc who does an ECG, which is normal, so no problems there then??? This is the sort of thing we live with x 100. I go again, get offered a/depressants. I give up and suffer the symptoms. Every morning I wake feeling like I've been hit by a truck I don't bother the GP with that one. The Countess gets it she knows we are suffering and cares deeply about it, we don't need to provide proof of the terrible situation here. GP's don't believe ME is a serious illness, fact.
    Wessley did his work well.
     
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  11. Firestormm

    Firestormm Guest

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    Have a listen, Mary, I think it's worth it. She also covers current treatments, treatments in the lab, and possible future treatments too. Maybe you have listened already. Anyway, I posted it here: http://forums.phoenixrising.me/inde...tics-of-novel-subgroup-cfs.20807/#post-317348 if you want to discuss it specifically, but I thought of you when listening to it earlier.
     
  12. mobyjoby

    mobyjoby

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    It was Professor Newton who diagnosed my POTS last week. It seemed like a great team there.
     
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  13. justy

    justy Senior Member

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    This is exactly my experience over and over and over again for the last 17 years ad nauseum. I have never been investiagted for any other condition apart from Addisons, despite having symptoms that could be either Lupus or Sarcoidosis. I have never been tested for an autoimmune disorder, other than standard thyroid testing. All this despite being seriously ill, housebound, wheelchair bound for trips out and having had numerous cases of pleurisy and pneumonia, leaving me with significant scarring in my lungs. Even had a raised ESR and anemia recently (that doesnt resond to treatment) and they still think i just have CFS (which is just the GP s way of saying you are depressed)

    Where i live ther is no M.E serivce/clinic etc at all and not one within travelling distance. I believe there is a physiotherapist in Anglesy who has a clinci because he is interested in M.E (4-5 hour drive and pointless) also there is a service in Bristol (3 hours drive and i dont qualify as i live in Wales) Despite being housebound and at one point bedbound a GP has never visited me at home, even when i had severe pneumonia and couldnt lay down for 3 months due to it.

    I feel really quite distressed that some forum members don't believe what they are being told about the situation for most of us in the UK and how poorly we are treated. Despite countless visits to the doctor with joint pain and swollen joints i have never even been offered a painkiller - let a lone a referral to a rheumatologist.
    Obviously i can't provide evidence of this. It's just my life i suppose that i have to live day in day out. Not believed by the doctors and now not even believed on here.

    Ho Hum, Luckily ive had plenty of counselling in my life (yes including CBT, which didnt cure me or in fact help at all.) So i am a pretty well adjusted person, who thankfully (most of the time) has the resources to cope entirely alone (not withstanding my very supportive and loving husband and children) If it were not for them i would have given up long long ago.
     
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  14. urbantravels

    urbantravels disjecta membra

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    Just to muddy the waters further, CBT is only one *type* of psychological counseling - not necessarily the best. It is, however (prepare to die of shock) favored by insurance companies because it is much quicker than other forms of therapy. "Psychodynamic" therapy is the approach that many therapists use - which is the basic thing people usually think of when they think about "therapy" - you talk about your feelings, your life experiences, your family etc. and the therapist is supposed to be your neutral ally - not telling you what you should and should not think, but helping you sort things out. It can take quite a while, but it's not like, say, classical Freudian analysis that can basically go on for years or indefinitely.

    CBT, on the other hand, is designed to correct "wrong thinking" in a minimum number of sessions. There is evidently a philosophical divide between this approach and more interpersonal forms of therapy, as well as a lot of potential for abuse in what might be considered "wrong thinking." That potential for abuse certainly isn't limited to our patient group. CBT is also considered more "evidence-based" as it has been studied a lot more, thereby reinforcing the ability of insurance companies to claim it is not only a legitimate therapy, but the therapy with the best evidence of success. So if I'm an insurer and I'm *obliged* to offer mental health coverage, I will typically limit sessions of talk therapy to, say, 10 sessions a year of CBT, if that, and rationalize the limitation by pointing to the "better research base" of CBT. (At my insurer you also have to be really significantly distressed to qualify for the 10 sessions.) I can see the dilemma in not wanting to hand out weekly 1-hour sessions to anyone who is having minor problems, or just wants to unlock their creativity, or something, but something about using the "success" of CBT as a framework for rationing care smells fishy to me.

    Part of the problem is that the psychodynamic/interpersonal crowd has often been opposed to doing formal studies of their work, believing that what they are doing cannot be understood by data alone. (I'm paraphrasing here, there's a lot more to it which I don't remember clearly.) And frankly, I think they're at least somewhat right. I've never *had* CBT, but from what I've heard and understand about it, many people claim it's just a band-aid over your deeper problems - or, worse, an exercise in training the patient to tell the therapist what they want to hear. Studies typically don't follow patients for years and years after therapy is concluded; the claim often made about CBT is that, by failing to address deeply underlying issues, it just temporarily suppresses those issues, where they can easily bubble back up again in the future.

    This is all based on secondhand information and stuff I've read, so take me with a grain of salt. Just a reminder that "CBT" does not = "therapy." CBT is merely one form of therapy, that's designed to be quick, not dig too deeply, and starts from the premise that the patient has "wrong thoughts" and "wrong feelings."
     
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  15. Bob

    Bob

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    barbc56

    The Gibson Report, that ukxmrv cited, was a UK parliamentary inquiry into CFS/ME:
    http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf

    As for personal experiences, we can't provide you with citations, but a number of us have explained to you in the past what the NHS services are like, and that a number of us have had really negative experiences, and that many of us have no access, or limited access, to sympathetic doctors.

    I'm sure that the UK is not unique in this respect.

    And a number people have said that they have had positive experiences, or mixed experiences, with their doctors.
     
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  16. Firestormm

    Firestormm Guest

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    Note: I have cut down the content of this letter. It features examples from NICE wording, and notes that no patient has to take part in either therapy. Some had said I believe this was rather naive - but the following is relevant I think to Lady Mar's position:

    Originally posted here: http://peoplewithme.com/thread-1993-page-8.html

    The issue in the most recent letters is not the NICE Guideline or the provision of CBT and GET. It is the desire on Lady Mar's behalf to obtain confirmation from Wessely that he no longer holds the following true, or that if he still does, then perhaps for a better explanation as to why and how successful this belief might have been (that last is my summation):

    I think she feels this belief is not in keeping with the NICE Guideline or the CMO report and the provision of CBT and GET. I figured it was necessary to let folk see what Lady Mar does support. Unless she has of course changed her position in recent years following the move towards the approach adopted in the manual of PACE or indeed the PACE Trial itself.
     
  17. snowathlete

    snowathlete

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    It is certainly believable, though I would think that must be illegal given the official acceptance of the illness as a neurological illness. I'm sure it could be challenged, though of course that is a long and tiring journey.
    My own experience of the local ME clinic (Bath, UK) was that they were sympathetic, the specialist who diagnosed me was very good, but overal they couldn't offer much in the way of real help. The GET they provided me quickly knocked me back a year or more, so I cant possibly recomend them outright, but they had a new Pyscologist who I saw and she agreed at once that she couldnt change my illness only help me to cope with the devastating reality of the illness, and she continued to hold true to this understanding through the time that i saw her. It did not, of course, make any difference to the ME but it did help me come to terms with having the illness, at least, in part.

    Not true everywhere. Things are changing, slowly. The GPs that I see aren't able to help me but I get the impression that they do consider it a real illness. The reason they can't help is because they are restricted by the NICE guidelines and wouldnt know what to do even if they had more freedom. There is still a lot of progress to be made, and damage to be undone, but there are some positive signs of progress. Of course, I accept that this is not true everywhere; there are probably still more people in the NHS with outdated view than not.
     
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  18. Firestormm

    Firestormm Guest

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    Cognitive–behavioral therapy: what benefits can it offer people with multiple sclerosis? My initial comment here.
     
  19. Valentijn

    Valentijn Activity Level: 3

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    I'm not sure what the point of this is. Normal CBT has absolutely nothing to do with Simon Wessely.
     
  20. rowland

    rowland

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    The recent AfME report on NHS provision for ME patients provides strong evidence of lack of care in Great Britain. It's a comprehensive survey of every local health trust, and was called "Ignorance, injustice and neglect" because,

    The full report is here: http://www.actionforme.org.uk/Resou...HS report Ignorance injustice and neglect.pdf

    There was a thread here: http://forums.phoenixrising.me/index.php?threads/david-puttnam-on-afme-report.17940/
     
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