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"Severe ME & the NHS" (25% ME Group)

Discussion in 'General ME/CFS News' started by Dolphin, Aug 15, 2014.

  1. Dolphin

    Dolphin Senior Member

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    From the latest newsletter from the 25% ME Group:


    Extract:

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    http://www.25megroup.org/Information/Newsletter/issue 37/Severe ME and the NHS37.doc
     
  2. taniaaust1

    taniaaust1 Senior Member

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    sorry but I didnt see anything wrong with the following long quote below, which invoked the quote in Dolphins post. Their comments were true, we cant access services. Severe ME patients shouldnt be just left with no medical care etc just cause they are housebound. "From the findings of this study we suggest that the development of clinical services for severely affected patients requires rigorous research " I agree with that, there should be rigorous research of the severe ME group (they may well be really shocked what they find if they do that).

     
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    25% ME Group only points out the lack of services to highlight how they could step in to offer CBT. They iterate that clinical provisions of CBT would be more effective than over the phone etc.
     
  4. Dolphin

    Dolphin Senior Member

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    The statement/extract may be read as beneficial to "both" sides.
    However, then one has to interpret how it is likely to be applied at this time and I think the 25% ME Group's interpretation of what is likely to happen, in the UK anyway, is reasonable.

    Claire McDermott (the lead author of the paper) is an allied health professional (I think an OT), not a medical doctor. She is currently testing some psychological/mind-body intervention:

    http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=14727
    That's where she is coming from. I recall seeing other psychological stuff she wrote previously.
     
    Last edited: Aug 16, 2014
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  5. taniaaust1

    taniaaust1 Senior Member

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    I do think that if they do go ahead and try anything with the severe housebound ME, they will quickly find out that it just aint working! Its one thing to say "we are going to do this" its another thing to succede in it. I dare say the therapists would be getting frustrated very fast with this group due to no progress.

    Maybe its the kick in the teeth those therapists need. I'd love one to try to attempt what to do with me (just talking a little too long on a phone can put me into hospital the next day).
     
  6. Wildcat

    Wildcat

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    The therapists did get frustrated with the patients in the FINE Trial, the Trial on housebound patients (FINE ran concurrent to the PACE Trial). The FINE Trial was a faliure... but it obviously hasn't stopped the onwards march of CBT and Graded activity being portrayed as 'specialist treatment'.
    .
    They never learn in Britian..... the researchers are in charge.
     
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  7. worldbackwards

    worldbackwards A unique snowflake

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    As a severely affected patient (though not as much as I used to be), I can confirm that GETs get frustrated when the severely affected don't respond as they're supposed to. I had graded exercise at home for ages, which largely consisted of me pushing myself too hard but still not doing as much as I was being pushed to out of self preservation. Eventually, inevitably, my symptoms stopped simply deteriorating and went into freefall, at which point I was told that the reason I wasn't doing as I was told to was to spite the therapist and that I wasn't motivated to recover. This was from a woman who, when she first saw me, didn' t understand the concept that some PWME have to stay in bed for the vast majority of the day, and never understood that a period of car travel could lead to me seriously deteriorating for weeks at a time.

    With alternative treatments and good management, I've managed to improve a bit, though I'm still largely housebound. What sticks with me was her complete inability to grasp that she was out of her depth. I sometime wonder exactly what the people had who'd she'd been treating so that she had such a bizarre sense of self confidence. Or maybe if you have such a heads I win/tails you lose approach to an illness, you're bound to think you're in the right all the time - any failure will always be taken as a failure on our part, so why should they worry?
     
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  8. alex3619

    alex3619 Senior Member

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    Most psychiatric treatment doesn't really work. What is the cure rate? Bupkis. Yet they keep doing it. It actually fits the idea of insanity attributed to Albert Einstein (though I don't think it was really him): insanity is repeatedly doing something that doesn't work in the hope that it might work eventually.

    Much of psychiatry is best thought of as a cult not science. The cult is never wrong.
     
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  9. alex3619

    alex3619 Senior Member

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    Slight modification. ;)
     
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  10. Dolphin

    Dolphin Senior Member

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    Yes, I think it's a case if a patient improves they can mentally put that down to the therapy/their input; if a patient deteriorates (or stays the same), it's the patient's fault. So they may never learn.
     
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  11. Min

    Min Guest

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    One participating FINE nurse charmingly concluded that the severely affected patients who s/he had failed to coerce into risking becoming more ill with graded exercse were "b*******ds who did not want to get well".


    This is the level of understanding, and of specialist care, that people in the UK with the severest form of the neurological illness myalgic encephalomyelitis can expect from professionals indoctrinated by the Wessely school of psychiatry. It will be even worse than the current strategy of leaving them to rot for decades.
     
    Last edited: Aug 17, 2014
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  12. worldbackwards

    worldbackwards A unique snowflake

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    The key thing about FINE is that it failed, ruining the basic plan, which in the draft NICE guidelines had been to roll out CBT/GET across the board. As such, the severely affected should still be left to their own devices ("activity management" sounds like a non-treatment if ever I heard one. Do these "activity management" therapists exist?); bad enough, but nothing is better than something that stinks. Also, some specialist care is better than others; I'm reliably informed that, after a changing of the guard at my local, the psychiatrists are out and an 'interested GP' is in who knows what he is talking about. I'll be damned if I go anywhere near them again, but it does sound better than it was. The looming problem on the horizon is what looks likely to be forced treatments for people in the WRAG.
     
    Last edited: Aug 17, 2014
  13. Wildcat

    Wildcat

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    The UK FINE Trial:

    Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis


    Sarah Peters1*, Alison Wearden1, Richard Morriss2, Christopher F Dowrick3, Karina Lovell4, Joanna Brooks5, Greg Cahill3 and Carolyn Chew-Graham6

    http://www.implementationscience.com/content/6/1/132


    'A particularly difficult challenge of interacting with patients for the nurses and their supervisors was managing patients’ resistance to the treatment. This arose from patients not accepting the rationale for the treatment and occurred for both types of psychological treatments, though for different reasons.

    (Nurse): .‘I used to go there and she would totally block me, she would sit with her arms folded, total silence in the house...she pulled out of the trial…it was tortuous for both of us.’......




    (Supervisor): ‘There have been one or two times where I have been worried because they have got angry at the patients…that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over… there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better”…I think it’s a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.’



    Managing patients’ emotions was an extremely demanding aspect of their new role.

    ‘That anger…it’s very wearing and demoralizing.’ (Nurse)


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


    http://www.implementationscience.com/content/6/1/132


    Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis


    Sarah Peters1*, Alison Wearden1, Richard Morriss2, Christopher F Dowrick3, Karina Lovell4, Joanna Brooks5,

    Greg Cahill3 and Carolyn Chew-Graham6


    ’They felt they were nurses and they felt, not frauds exactly working as counsellors, but you know not at home in that field really. I think part of my role was a kind of normative role helping them to feel their way into the persona really of being a counsellor... rather than just dealing with the nitty gritty of the patients.’ (Supervisor)


    Despite their newly found knowledge and skills in these two specific therapies, not having a background as psychological or behavioural therapists meant that the nurses had a relatively limited range of therapeutic skills to draw upon, particularly for more challenging or complex cases.



    ’They don’t know the kind of therapeutic tricks which you have, which you pick up from being a therapist.’ (Supervisor)


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



    It appears that one of the primary issues of the FINE TRIAL was not “managing patients emotions”
    ....but managing the nurses’ emotions…..!!!!

    .
     
    Last edited: Aug 17, 2014
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  14. worldbackwards

    worldbackwards A unique snowflake

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    In a way, I feel for them; they appear to have been sacrificed to someone else's ideology like the rest of us. The difference is that, at some point, they get to walk away, whilst we're left to pick up the pieces and deal with the damage.
     
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  15. Wildcat

    Wildcat

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    I feel so much more sorry for the patients ... who have been sacrificed to an abusive ideology....

    .
    Personally... I have not been near any UK NHS health professionals in nearly 10 years .... for my own safety.... because if they had had their way in the first 10 years of ME .....I would be six feet under twice over...... I stay away from them for my own safety ..... to preserve my right to life and my civil and human rights......

    In year 5 I had to escape from the clutches of an obsessive GP who was obsessed with Graded Exercise to the exclusion of all other considerations....... Finally she admitted that she herself was "under stress" because her father had died...

    The GP was witnessed by four people in my home on a home visit.... the reason the other people were there was to make sure that the GP Listened..... Did she hell..... she spent 50 minutes trying to dominate 4 people into being subservient to the GPs obsessional delusions that there was 'Nothing Wrong except "YOU Wont go back to Graded Exersise" ' ..... The GP's behaviour was Grandiose and contemptuous ...

    She kept repeating ..."Graded Exersise is a Proven Treatment.. WHY Won't You Do It!!"
    .
    The next day my homecarer (from Social Services) said "Wildcat... are you sure you want to go back to that GP Surgery.... Because Your GP Is Off Her Rocker!!".

    The other 2 witnessess to the GPs behaviour said the same..... that the GP was not in a fit mental state to be at work......

    .But ultimately the GP had Total Control.... due to her ridiculous crazy Statements in My Medical Records.... I was at the mercy of a GP who was not in a fit mental state to be at work!!!!


    CBT and GET are not merely useless..... They are a Tyranny.....


    .I find it very difficult to have 'sympathy', for misinformed Health Professionals.... at the end of the day they go home.....

    .
    Years later, when I was eventually able to use a computer again, I read about Sophia Mirza, who was also at the mercy of an obsessive GP..... I am so grateful that my family rescued me (from the Obsessive GP) and moved me to another part of the country, because I came very close to going the same way as Sophia... due to the obsessions of a misinfomed and obsessive Control Freak GP!
    .
     
    Last edited: Aug 17, 2014
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  16. Wildcat

    Wildcat

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    In the early 1990s (before ME) I worked with an Aid Charity, delivering food and medical aid to a War Zone.

    .
    To be bloody honest, I was safer in a War Zone, on the wrong end of a bloody great gun, whilst fit, healthy and capable…. Than I was 5 years later in my own country, even in my own home, whilst very severely sick with ME!

    .
     
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  17. Min

    Min Guest

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    Did no one think to enquire as to the reason for the patients' reported anger?


    Maybe these severely disabled patients did not wish to be coerced into doing something that had already permanently worsened their symptoms, by clueless nurses who had been brainwashed into believing that graded exercise could cure a neurological illness?

    Did any of them think how wearing and demoralising it was for the patients to be offered nonsense instead of effective treatment?

    What a complete waste of £1.5 million that could have been spent on biomedical research.
     
    Last edited: Aug 17, 2014
  18. worldbackwards

    worldbackwards A unique snowflake

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    That's what you get when minds have already been made up in advance. Basically, any research done by Wessely, White, etc. already has a vested interest, in the forms of their career and their general shtick, which are immediately under threat from any adverse results. Given this, it is important that certain things are 'known' and can't be challenged from the outset.

    On the one hand, I'd say that £1.5 million was worth it to a degree, because it means they made very expensive fools of themselves and probably won't be allowed to do it again - it will never be said that they proved they could 'cure' the severely affected. On the other hand, it probably also had something to do with how FINE was quietly hustled out under cover of darkness whilst all the PR fireworks came out for PACE, to cover it's rather shabby tracks - the stakes suddenly became even higher than they already were.
    So do I, myself included. Not just the period 'doing' GET, but the years I had the basics right, yet couldn't do anything (I could barely watch TV for a bit) and couldn't get anywhere, 'cos I didn't know how to manage my awkward symptoms and knew if I asked anyone I'd just be told 'have you tried CBT?' It took me a decade to sort things out properly and figure out exactly what to do and how to do it, and those wasted years were basically sacrificed to Wessely's power trip. But those nurses, they seem to have been thrown in at the deep end without the faintest idea of what they were getting into. As Bob might have put it, 'They're only pawns in their game'.

    Wow, does your carer call you Wildcat? I might try and get my mum to call me worldbackwards. I don't think she'll go for it though : )
     
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  19. Wildcat

    Wildcat

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    Worldbackwards wrote: "Wow, does your carer call you Wildcat? I might try and get my mum to call me worldbackwards. I don't think she'll go for it though : )"
    .


    I no longer have a carer..... It took me years to get one via Social Services (no help from GPs, in fact they obstructed any possible home care...... but I knew if I could get an assesser out to see me that they would HAVE to ACT because it was clear to SS that I would have died without homecare at the time)...... but due to the determined destructiveness of GPs and Consultants I no longer have any contact with either the NHS or Social Services. ...for my own safety .... I do not have a family member to care for me.

    .
    It is amazing to me that people who are actually being persecuted by medical doctors are ignored until they are actually dead...... try getting help whilst you are in the middle of it and all you will get is platitudes...... trivialisation and denialism...... or jokes....
    .

    .
     
    Last edited: Aug 17, 2014
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  20. worldbackwards

    worldbackwards A unique snowflake

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    I understand you reluctance to engage with them, if you get on the wrong side of doctors, etc, you end up handing control to someone who has absolutely no idea of the damage that they're causing. But if your lucky enough to find an understanding doctor it's very useful. My own doctor turns up once every two months and asks me how I am and if I'm still picking up a bit. We call it 'activity management' and it keeps everyone off of my back. If you dare, it may be worth keeping an ear to the ground. I'm terrified about what happens when he retires though (not too far off, relatively speaking).
     
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