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Negative publicity on PWME - the motive?

Discussion in 'General ME/CFS News' started by currer, Sep 27, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    I agree completely. There is a role for psychology in ME/CFS - the same role it has in any other chronic or terminal illness in helping to adapt to the illness. But psychiatry is treating mental illness, which we do not usually have. And that some people think we should automatically have psychiatrists involved in our care solely based on the ME diagnosis is rather telling.
  2. Firestormm

    Firestormm Senior Member

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    Nonsense. Complete Nonsense. We don't get to choose who is involved with our care. We can choose not to accept a referral. We can choose not to follow any advice. But I suspect for the majority of patients with any long term condition especially one that is categorised as neurological - the involvement of anyone is regarded as helpful. People with a long term condition do not get to see a e.g. neurologist all or even any of the time.

    A neurologist is not able to continue looking after someone with a long term condition beyond a certain point (if they are involved at all). Our GPs don't any longer have the time - I noticed that now my own surgery have a notice on the wall informing patients that the appointment time is limited to 10 minutes. What, pray, is a e.g. neurologist going to do when I can't cope with this life? Hmm...? When I cannot adjust to this life that I have now? Do you really think that it is any different for those others mentioned in that paper I just referred to? Those with diabetes or (from memory) a coronary heart condition?

    This is the system of clinical care Valentijn. And there ain't no magic bullet. This isn't research. This isn't make-believe. So I take whatever help is offered and make of it what I can. And if that makes you think any less of me or that I don't actually have ME - then I feel extremely sorry for you and anyone else who thinks the same. There will be no unity in this 'community' until attitudes like that towards fellow patients with the same diagnosis is cut out like a tumour.
    barbc56 likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    This one doesn't seem to suggest having a psychiatrist involved by default for real diseases - only for costly fake symptoms caused by childhood trauma, etc.



    Sorry, but this sounds like the usual biopsychosocial B(P)S. We're costing the system money, referrals are pointless, so we should go get our presumed mental illness diagnosed and stop being such a burden. Or do you think that accepting emotional trauma as causing our symptoms is going to cure us? Because that is exactly what this article is suggesting for Medically Unexplained Symptoms.

    This is talking about people being referred from a diabetes clinic if they have a low mood. A rather different proposal than having a psychiatrist automatically involved in care.

    This is simply about the costs of depressed diabetes patients versus non-depressed. It doesn't seem particularly germane to the point and hand, unless the point is that we'll cost less if we see a psychiatrist.

    Only applicable to children - there was no significant difference for adults. And even the evidence of effectiveness for children was weak, and there's no information regarding whether the children that were or weren't helped by psychological intervention did or didn't have psychiatric issues.
    Cancer patients don't survive longer with group therapy, but feel better. Pay-to-read details. No idea what level of improvement there is, or for which groups of people (patients with or without pre-existing mental illness).
    Social support suggested for women with breast cancer, especially in the year after diagnosis, due to high levels of anxiety and depression. No one's suggested we couldn't use some of that. But again, seems like an argument for emotional support, not automatic psychiatric care for every patient, regardless of symptoms.

    They're talking about psychiatric care for ... people who have been referred for psychiatric care :p

    The studies don't seem to state that everyone with any disease should automatically see a psychiatrist. The other sources only talk about psychiatric services for people that are referred to see a psychiatrist, presumably because they have psychiatric symptoms. The exception, of course, is the first source which suggests that a Medically Unexplained Symptom necessarily indicates a psychiatric problem.

    So I'll say it again: It makes no more sense to incorporate psychiatrists into our treatment by default than it would to do so for diabetes or cancer patients. No matter what the psychiatrists might think is ideal, all diabetes and breast cancer patients are not automatically sent to a psychiatrist. In too many of the cases, it simply isn't necessary.
  4. SilverbladeTE

    SilverbladeTE Senior Member

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    IVI,
    I'm sure the Weasels are very greatful for your support and income!
    Is there some new slogan I missed some how? "Be all the victim you can be?" :p
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  5. Esther12

    Esther12 Senior Member

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    No time for a proper post, but re providing psychiatric care as standard to those with chronic health problems, I think that all need to recognise how controversial this area is, and that many psychiatrists are concerned that there is currently a push to over-medicalise people's responses to difficulties. Having seen how the NHS operates, I think it's best to be very cautious about placing people under any sort of medical care, and that this should generally only be done when we have a good understanding as to what is wrong, and really compelling evidence that the treatment being carried out is beneficial. A lot of researchers will have a pet theory, and it will generally be possible for them to produce studies which give a misleading impression of their own expertise and value for helping patients - it looks to me that this has been done for psychological interventions for a wide range of patients - and certainly for CFS. That's not to say that there are no people with cancer or CFS who would benefit from CBT, but it is to say that we should be aware that the benefits are often exaggerated and the harms ignored.

    Generally, the people working on designing and analysing CBT RCTs will be CBT therapists... I think that it would be better if RCTs were designed, run and analysed by those who had no role in designing or carrying out the therapies assessed. I think L Jason did and RCT testing Anthony Cleare's CBT for CFS, and found it to be ineffective (sorry got to get off PC, so I've not checked details, and could have got them wrong).

    Really complicated topic though, and I'd be very cautious of accepting claims of efficacy made by any particular study.
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  6. Firestormm

    Firestormm Senior Member

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    There is a quote I rather like. Taken from the ME Association's 'Clinical Issues' guide for clinicians and written by Charles Shepherd and Dr Abhijit Chaudhuri Consultant Neurologist from Queen's Hospital in Essex:

    The thrust of this clinical guide is to try and cover the missing content in NICE with regards pharmacological interventions with symptom management.

    Not in a way that says one (or more) is better than the other but that all should be considered, that there are things out there which can help relieve some of the symptoms attached to this condition - and simply talking about it all need not be the only option.

    There is a movement in the psychiatric/psychological world that is trying to offer more support with long term conditions - as seen in that paper I was talking about provided by IVI about Liaison Psychiatry above.

    There does seem to have been in recent years far more caution expressed by GPs to prescribe medication and to review what medication one is on - most notably pain medication I noticed - but anti-depressants are being drawn into the spotlight and anti-biotics (more recently).

    I want more people to be afforded the consideration in relation to drugs that I have - and what I am taking now is not necessarily all that is on offer - but I want to see GPs and certain specialists at least have the knowledge and willingness to prescribe and not to see 'therapy' be offered as the only option in e.g. the NICE Guideline.

    The only drug mentioned in that best practice guideline is an antidepressant - which might have been determined to help also with pain management and indeed with sleep - but there is far more in a GPs medical bag than that which should really be highlighted.

    Yet the NICE Guideline even is not compulsory. GP commissioning groups and GPs themselves are not obligated to adhere to anything in that document - not even the criteria.

    In some areas of this country, therapy is being offered as the only intervention for people with my condition and in other conditions also - but for them it is after (basically) medicine has said 'we can do no more mush - you're on your own'

    So, yeah, I do get it. How could I not after 15 years? I just will not turn my back on any help offered out of principle alone. A principle that some seem to advance of certain discipline involvement denigrating the reality of my condition.

    I think such people are wrong. There is a lot of crap misinformation out there on the internet about who said what to whom. About motives and such. Personally this kind of nonsense drives me straight into the arms of a therapist i.e. it will drive you nuts this endless back-and-forth.

    Outside of scientific papers outside of a world seen by some as flat and viewed by them in monochrome - there is the real world. If you don't have a GP who can afford you the time, if you don't have an immunologist or other medical specialist who is available, if the only specialist you do have access to (and not everyone by any means does) is a psychologist or an occupational health therapist - then working with them does not denigrate the reality of the condition.

    If a patient with a diagnosis of ME finds some measure of help from meeting with a therapist or indeed as a result of seeing a psychiatrist - then who are we to question that? Sure when talking about quantitative proof for the protocols being advanced, when it comes to PACE and anything else - then we can talk about the claims being made - but on the frontline and in the trenches I don't think we have any right to question someone in the way that gets done at times.

    I might not believe the headlines behind the PACE trial but that doesn't prevent me from accepting a referral if one is made to see e.g. a clinical psychologist who might (might) draw on the principles of CBT in working with me. Similarly, if I were to be referred to an occupational health therapist who draws upon the principles of GET (just as everyone else does in various ways including those lofty medical consultants I have ever seen) then I will listen to what they have to say, discuss my concerns, and take from it what I can and try to do what I am able.

    I have said before, that 'modern medicine' seems to be going full circle. We seem generally to be returning to much that was dismissed when drugs took over. It seems we jerk from one extreme to another sometimes at least at the level of generality.

    In the ME world it is true that we see far more papers from psychologists and psychiatrists I think that from what are collectively termed as separate specialists - the 'biomedical' cabal. These more noble individuals who are to be our saviours. Whose very presence on the stage causes desperate people to sit up and soak it up.

    But these lofty types are few and far between and despite promising hope and answers they've produced buggar all in reality. And man, that's depressing. After 15 years of this too-and-fro that's more than depressing - that's providing no damn hope at all.

    So much for 'modern medicine'. So if nobody minds I shall take whatever help in the trenches is on offer. It's better than lying here waiting for godot.

    But be in no doubt if I ever come across any shrink who speaks of cures or exaggerates my chances at recovery based on me doing it all myself - then I will treat them just as much as I treat those 'biomedical' lot who make similarly unsubstantiated claims based on lotions and potions and a belief that they are right - but just can't prove it yet.

    Fire :)
  7. Esther12

    Esther12 Senior Member

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    Hi Fire.

    I may not have been following this thread closely enough (busy period + my first 'boom and bust' in years and years), but I wasn't really sure what parts of that were replying to me.

    I certainly never meant anything about someone finding any particular approach to be helpful to be a denigration of their illness.

    I don't really have time to go in to a really complicated topic (I've just deleted loads because I knew that I was not being clear enough). I think that there is a problem with the stigma of mental health putting people off making use of services which could be helpful to them, but I also think that there is a problem of people assuming that those working in mental health are not quacks, or that believing many of them are somehow stigmatises patients with mental health problems. I think that the NHS's provision of MH health his extremely variable, and often pretty dodgy. On top of that, there are very specific problems with the way in which CFS is viewed and treated by those within the NHS. I think that there is a serious problem with quackery within MH, and that this is partly as a result of the belief that those with MH problems are deserving of lower standards of care. I think that possibly neither of us is really being clear enough here, and that's partly because it's so difficult to be really clear about topics which are so complicated and contested.
  8. Firestormm

    Firestormm Senior Member

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    Nah. I wasn't addressed to you Esther. Not all of it by any means. Panic not. I agree these are not 'black and white' issues by any means or stretch of the imagination.

    Get yourself rested. Hope the 'bust' is a short-lived one. Take care :)
  9. Esther12

    Esther12 Senior Member

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    phew. It is really difficult to be clear about things like this, so I'm always wary of miscommunication, and was aware that I'd knocked out my last post very quickly before bed.

    I'm pretty much over the 'bust' now (super restorative skills). It did remind me how lucky I am to be able to live life in quite a controlled way that allows me to avoid making myself feel worse like that (I think I could have a little cold that left me a bit more snotty and vulnerable too). (Ugh - I just re-read that - by 'lucky' I meant relative to other CFS patients... it's not a fantasy lifestyle!)
    Firestormm likes this.
  10. PhoenixDown

    PhoenixDown Senior Member

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    ...
    I don't like the cut of their jib. I'm not keen on anyone who refuses thorough testing for people with yet undiagnosed illness, then proceeds to call it "medically unexplained", or by default puts the patient in a category of illness that we KNOW will yield devastating misconceptions regarding the patient's will power, attitude, ability to comprehend pain, ability to know whether a symptom has got worse or not, etc, and calls this process "Evidence based medicine".
  11. Valentijn

    Valentijn Activity Level: 3

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    I'm not sure we read the same Liaison Psychiatry paper. The one I read advocated using psychiatric treatment to END referrals and attempts at symptom diagnosis if there is a Medically Unexplained Symptom. Sure, getting fully integrated physical and psychological care is a great goal, but they are only in favor of that for diseases they understand. Everything else (including ME/CFS), would be getting psychiatric care in an effort to put a stop to us seeking physical care.
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  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It is not a matter of "what the psychiatrists might think is ideal" - it is how services are structured - pyschiatry is now integral to many clinical services - including oncology and endocrinology; it is not an issue of 'being sent to ' - psychiatry is part of the package of care. Again this is a development you may not like, it may be a wrong direction for medicine to go - but it is how things have developed. It is the reality that has to be dealt with, and protest and objection are unlikely to produce beneficial responses from administrators or clinicians, meaningful enagement with health service providers will likey require negotiation and demonising psychiatry as a source of all harm for M.E/CFS patients is simply not going to be meaningful for those we would wish to negotiate with in terms of the best available support for M.E/CFS patients.

    IVI
  13. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don't understand why you interpret the ideas of negotiation and engagement as 'victimhood' . This isn't WoW or CoD, we are discussing, it's real life where things are messy and difficult and compromises have to be made. You are of course, as an individual, entitled to find what enemies you wish wherever and whenever, and to shout 'no hegomony' at any and every perceived oppressor - but dressing that up as being something meaningful in terms of changing attitudes or altering the direction of resources and services is just posuturing. Given the implied insult (though how you see it as support is beyond me) in this case I think I'm within reason to reply " for heaven's sake grow up".

    IVI
  14. ukxmrv

    ukxmrv Senior Member

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    I'd really question if psychiatry is "integral to many clinical services - including oncology and endocrinology" in the UK NHS.

    Having had experience with family members in these areas there was no sign of psychiatry in the clinics, in the leaflets in the clinics and neither was it mentioned by doctors.

    Not sure where you get this idea from?
  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The point is (flawed or not) this applies to broad areas of clinical practice. It is not about a focus on M.E/CFS but a systematic approach that (if disadvantage occurs) will impact upon a broad patient population. So the question becomes not - "how do we stop thse nasty psychiatrists saying those horrible things about us", but how do we negotiate with (enter all relevant parties - patient groups.clinicians, service providers, commissioning bodies etc) in order to achieve change.

    IVI
  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Try Google search on Oncology, Liaison Psychiatry, UK. For example:
    http://www.leedspft.nhs.uk/our_services/liaisonpsychiatry
    The Leeds psych-oncology service
    The Leeds psych-oncology service aims to meet the psychosocial needs of all oncology and palliative care patients. The goal of the service is to reduce psychological distress and improve psychological well-being in patients, relatives and staff within the oncology and palliative care services.
    Regional referrals are accepted through either Clinical Psychology or through Liaison Psychiatry at The Becklin Centre. Referrals can be made by any professional working in Oncology and Palliative Care and can be in writing or oral (inpatients only).
    Tel:

    For the most part you would be unlikely to notice the psychologists/psychiatrists - if they are any good, their presence is understated.

    IVI
  17. PhoenixDown

    PhoenixDown Senior Member

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    Go on then, how do we do that?
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  18. GracieJ

    GracieJ Senior Member

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    It is becoming a very common trend here in the USA, routine, for antidepressants to be prescribed for cancer and heart patients, among others. The idea is that every tool possible needs to be used for coping and recuperating. I think it is unconscionable, given the ineffectiveness of these "drugs" and their track record for side effects. It has been an even longer trend to give them to the elderly. Crowd control and little more. With both the chronically ill and the elderly, the attitude among family members many times is "What can it hurt? If it's helping them, why not?" To even question the doctors or nurses is heresy. To question family members is seen as cruelty to the elderly and sick.
  19. Bob

    Bob

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    Daily Telegraph

    ME isn’t 'all in the mind’, but it’s still a mystery
    As medical adviser to the ME Association and an ME sufferer, Dr Charles Shepherd has spent the past two decades vigorously fighting the dismissive attitude still common among the medical profession. Here, he talks about the latest research into the disorder
    By Caroline Lavender7:30AM GMT 26 Nov 2012
    http://www.telegraph.co.uk/health/h...-all-in-the-mind-but-its-still-a-mystery.html

    Also on the ME Association website:
    http://www.meassociation.org.uk/?p=13809
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  20. orion

    orion Senior Member

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    Meaningful negotiation only even happens when both sides accept that change is necessary. And I don't see much evidence that doctors want to change a system that gives them a great deal of power, and patients very little.

    You need to learn the lessons of history. Almost every significant social advance has been conceded by those in power, only after they've been put under considerable pressure. Sure, there may well be a stage of "negotiation and engagement", but that generally only occurs after there's been a protracted period of conflict.

    The AIDS activists understood this reality, and we should learn lessons from the tactics they adopted. Obviously our medical condition means that certain options are not available to us. We can't, for instance, take to the streets. However, thanks to the internet, there are still many other ways in which we can apply pressure. And if that makes us unpopular then so be it.
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