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New Zealand CFS patients to get psychologists and physiotherapists from health board

Discussion in 'General ME/CFS News' started by Dolphin, Nov 18, 2014.

  1. Dolphin

    Dolphin Senior Member

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    (Not a recommendation)

    http://www.nzdoctor.co.nz/un-doctored/2014/november-2014/18/fighting-chronic-fatigue-syndrome.aspx

     
    rosie26 and Valentijn like this.
  2. Valentijn

    Valentijn WE ARE KINA

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    Great, the idiocy is spreading. Do they sit down and say "We can't cure ME patients, so let's pretend to be doing something while torturing them and blaming them for their own illness. That's much better than admitting we don't know what's wrong and that we can't even be bothered to treat symptoms!"?
     
    AndyPandy, dancer, Dolphin and 9 others like this.
  3. Valentijn

    Valentijn WE ARE KINA

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  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    That sounds like people taking an unusually long time to recover from an infection who may improve regardless of what was done.
     
    mango, Wildcat, Ren and 2 others like this.
  5. OverTheHills

    OverTheHills

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    This is the worst news I have heard in a long time. It's my region of New Zealand, so this nonsense is probably going to affect me directly. One reason I left England, which I love and will always be Home for me, was to get away from the active obstruction of my medical care.

    I feel numb now but will be angry later.

    I am involved with the regional ME support group and thance indirectly with the national organisation. If anyone (from any country) has thoughts about how to oppose this, please PM me.

    First thoughts are to write to local MP and get National ME organisation involved.
    OTH
     
    AndyPandy, mango, Cheshire and 6 others like this.
  6. rosie26

    rosie26 Senior Member

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    :vomit: Yeah, I couldn't believe it when I read this this afternoon. I have never heard of anything like this happening in my country before. @OverTheHills do you know if this treatment is compulsory? If it is compulsory then we need to have it shut down pretty quick so it doesn't cause harm and distress to the very sick sufferers of ME. It's not appropriate treatment. I would think Ros Vallings our ME doc will need to go pay them a visit and find out what is going on!
     
    AndyPandy, Ren, Min and 1 other person like this.
  7. taniaaust1

    taniaaust1

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    sending a **hug** to OverTheHills. Its scary cause NZ and Australia often do similar things too and from the state Im in in Australia.. Im seeing all kinds of very bad attitudes towards ME/CFS and I personally do not find things are getting any better. Only a few weeks ago I had a psychriastrist tell me that ME/CFS is treated by ECT - shock treatment if CBT doesnt work.

    They are doing crackdowns here on disability pensioners and extending the age groups they are doing crack downs on (under the belief that most on a disability pension can work), what's the bet it wont be long before they will start trying to force us all into CBT programs to try to make us be well.
     
    Last edited by a moderator: Nov 19, 2014
  8. Sean

    Sean Senior Member

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    Coming soon to Australia too, I will bet.
     
    Min likes this.
  9. OverTheHills

    OverTheHills

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    @rosie26 No this thread was the first I heard about it. I'm thinking there won't be compulsion but the fact that its going to be rolled out to all three hospitals in the region is a very bad sign.
    OTh
     
    aimossy and rosie26 like this.
  10. Valentijn

    Valentijn WE ARE KINA

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    They have a feedback page on the site of the medical organization which I linked above. It needs a proper physical mailing address however, which means they probably take local complaints a lot more seriously.
     
    Snowdrop and Min like this.
  11. OverTheHills

    OverTheHills

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    The District Health Boards are governed by elected bodies. I should be able to identify the board members with a little work.... and I think that is the place to start. I may ask my friends online to point out for me the neatest peices of refutation to provide to the authorities.Because I have next to no memory.
    OTH
     
    Valentijn likes this.
  12. aimossy

    aimossy Senior Member

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    Mogwai, AndyPandy, daisybell and 4 others like this.
  13. OverTheHills

    OverTheHills

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    Good. I hope they will be taking firm action and because I am an optimist I am going to hope that action will be effective. I think this 'service' needs shutting down whether it is compulsory or not. I have met people who have been harmed by GET type programmes which probably-well-meaning-doctors offer to under-informed relatively new patients.

    I don't think I will be getting much sleep tonight. Too angry.:bang-head::mad::bang-head::mad::bang-head:
    OTH
    PS @Dolphin thanks for spotting it. Vile though it is.
     
    Last edited: Nov 19, 2014
    aimossy likes this.
  14. A.B.

    A.B. Senior Member

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    Fight the illness by getting over the fear of exercising. So the "illness" is the fear of exercising? Words fail me.
     
    rosie26, Mogwai, Wildcat and 3 others like this.
  15. Min

    Min Guest

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    No other neurological illness is treated in such a cruel manner.
     
    Ren and Wildcat like this.
  16. Bob

    Bob

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    I haven't read the text yet, but that photo is sooo patronising...

    Says the therapist to the patient: "Look, if you stretch your arm up - like this - copy me - you'll start to feel better - you poor silly thing. Fancy that - you silly thing - getting ill because you stopped exercising - how did you get yourself into such a silly hysterical state..."

    Says the patient to the therapist: "Erm, well, actually I've been holding down a part-time job so I've been getting plenty of exercise, and my health has been steadily deteriorating. In fact, every time I carry out activity, my health seems to deteriorate further. I can't see how stretching activities are going to help address my flu-like symptoms, and generalised pain and exhaustion that have been getting steadily worse. Don't you think your therapy fundamentally misunderstands the immunological and progressive nature of the sudden-onset disease? Have you actually understood my current circumstances? What evidence is there that activity programs actually treat ME/CFS?"
     
    Last edited: Nov 19, 2014
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  17. daisybell

    daisybell Senior Member

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    I hope this gets a big backlash...it always worries me when I see a pathway for something which is not appropriate. Pathways have a habit of spreading amongst the district health boards... Like plagues.
     
    Valentijn likes this.
  18. alex3619

    alex3619 Senior Member

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    They make a prototypical mistake I am guessing. They confuse post viral fatigue and other chronic fatigue states with ME. We really need an easy diagnostic test.
     
    anne_likes_red, Valentijn and Bob like this.
  19. Snowdrop

    Snowdrop Rebel without a biscuit

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    I am horrified to here that this malignancy is spreading.

    I've been thinking for a while now that we need some committed person extremely knowledgable of ME to put together a package of information that can be easily shared by anyone who has the opportunity. It doesn't have to be a patient although someone who is not too ill who has support may be able to do it. If I could manage I would volunteer but I can't. My cognitive functioning is at least as bad as my physical functioning.

    I think the information should talk about the politics and history around ME and the CFS label with supporting links to the information. It should clarify the difference between the CCC/ICC illness and Chronic Fatigue/Post Viral Fatigue and Fatigue of unknown origin.

    It should provide stories of people who are ill with treatments they have tried that failed to work. And yes different things have worked for different people but I believe there are people here who have done GET and can attest to getting worse. Knowing their symptoms that it is more than fatigue and how the illness has behaved over time and how their life was before would I think be helpful.

    Then it would be great if there was information on the latest research findings with links to the research and a lay person explanation.

    Consider the above my ME christmas wish list. :D
     
    Mogwai likes this.
  20. Mogwai

    Mogwai

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    I read this last night.

    Then couldn't sleep. I felt immensely angered and disheartened by it.

    Just the other week, with no prompting by me at all, my Aunty brought up the Stanford study. I was really encouraged by our short conversation.

    But now this shit has been dumped on my doorstep.

    Everybody that knows me knows that I love my sport - love watching it, and loved playing it. This "fear of exercise" line, to me, is as insulting as it gets.
     
    Ren, Sean, Valentijn and 2 others like this.

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