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Where do I go for advice and to complain?

Discussion in 'General ME/CFS Discussion' started by Ambrosia_angel, Apr 12, 2014.

  1. Ambrosia_angel

    Ambrosia_angel Senior Member

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    NICE? A major medical hospital that deals with cfs patients? I'm looking to tell them that I need help because my life is not improving and that I deserve help.

    Looking to write something like.
    Done cbt, physio not helped at all. More physio and still doing cbt ever so often. Not helping. Try hard not getting better. What do next? No social life no medical input only therapy no treatment. Want help. Like this.. I will link it after. It was on someone's signature but it showed how to treat cfs patients and how to test for chronic infections.

    If I write to a major hospital then it will be uclh. Because the have a teen division and I come under that bracket. Maybe maudsley too. If I contact nice then I wouldn't know where to go? Is this even worth it though?
    Last edited: Apr 12, 2014
  2. Cheesus

    Cheesus Senior Member

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    I think it is a good idea in terms of advocacy, but honestly I think your cry for help will fall on deaf ears. Take anxiety disorders as an example: if you do the 3 sessions of CBT they offer you and take the SSRIs and nothing helps then you're on your own - and that is for a condition that affects 10% of people!

    I would be very interested to see what response you were to get, if any - particularly from NICE.
    taniaaust1 and Ambrosia_angel like this.
  3. Ambrosia_angel

    Ambrosia_angel Senior Member

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    It makes sense I guess. Anxiety can make you housebound too but cbt is an affective treatment along with medication.

    Cbt doesn't help people with cfs. It's just a test tbh to see if they reply and what there answer will be.
  4. Cheesus

    Cheesus Senior Member

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    It wasn't very effective for me. I was left to fend for myself much as I am now. I cant imagine how good it must be to have a condition that the NHS takes seriously.
    Ambrosia_angel likes this.
  5. justy

    justy Senior Member

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    I would start with your GP practice - write a letter to the practice manager, outlining testing and treatments to date, perhaps asking for a case review with them, your GP and an advocate with you.

    Perhaps provide them with the MEA purple booklet at the same time - and give them time to read it.

    If this doesn't work, you could escalate up the chain: local health board, MP etc etc.

    For me I cant be bothered anymore, too much effort for no return. I have never had any appropriate medical care offered - not even a pain killer. I had to refer myself to the wheelchair service.

    Also I would advise you to be careful - some M.E patients have been considered to be mentally ill after insisting to medical people that their symptoms be investigated.

    Good luck,

    Justy.
  6. peggy-sue

    peggy-sue

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    You might find the Scottish Good Practice Guidelines useful?
    They give a slightly different perspective to NICE, and might just be taken a little bit seriously as they are within an UK-ish NHS remit.
    (I have to confess, I've not managed to get my gp to read these - and he's in Scotland. The "updated" version of the guidelines , after a certain well-known ME charity watered them down to allow NICE to be accommodated.
    The original version stipulated that the Candaian Guidelines should be used to diagnose ME and the NICE guidelines to diagnose CFS.)

    I've attached the two short versions. one for patients, one for gps.
    I can give you a copy of the full 65 page document if you like.
    Ambrosia_angel likes this.
  7. peggy-sue

    peggy-sue

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    I did complain to the practice manager at my surgery. I was assured that "they all take ME, very seriously indeed"

    Before treating me with even more contempt. That seems to be the only treatment they have available.
    taniaaust1 likes this.
  8. TigerLilea

    TigerLilea Senior Member

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    I have had CFS/ME for 23 years now. I have been to several doctors and specialists over the years, and, honestly, there isn't much that any of them can do for our illness. I don't think that writing to a major medical hospital, NICE, your GP, etc. is going to make any difference at all. Until medical science can figure out the mystery as to what CFS/ME is, we are pretty much on our own for the time being. :(
    AbbyDear likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    It may help advocacy if you direct your letter high up eg to your health dept. telling them you've done CBT and see a phyiso etc and these therapies are no help at all and you want more help as you want to get back to studies, work or whatever you used to do. Ask them for suggestions of what you should do now, who you should see or whatever.. then follow their suggestions and if they dont work, keep writing to them.

    If they kept getting letters from people telling them how much failure their therapies are, maybe they'd start understanding just how useless these therapies are (I think many health depts are completely naive on how often their recommendations are failing us).

    Maybe it would help to tell them just how many appointments you've had so far on physio and CBT! (that may get their minds thinking if they've paid out lots for you to attend therapies which are useless). Health depts think in terms of money!
  10. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Thanks for all the advice. I'm definitely going to write sometime in the near future. Feeling to unwell to do it right now. I'm going to contact the nhs (send an email of complaint/advice) and see their response. It seems like the most logical place to go to.

    What does NICE consider cfs to be again? Is it mental health? I know they treat it as mental health but does it tell Drs on written papers?
  11. peggy-sue

    peggy-sue

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  12. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Thanks Peggy. The second one was definitely interesting. I've read bit of the first one. It's annoying when they push the idea of stress on us. I know family members who get seriously stressed and don't get any illness. I was in a pretty sombre place when I became ill. Even after a few months I was still fairly okay. It was only when I wasn't improving at all that it became frustrating.
  13. peggy-sue

    peggy-sue

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    It's just old Freud's "hysterical conversion disorder" renamed.

    The good new is:
    When I googled "Bio-psycho-social model for CFS/ME" (using their terminology reluctantly).

    The first 3 references that came up were for the paper by Maes and Twisk! :thumbsup::thumbsup::thumbsup:

    http://www.biomedcentral.com/1741-7015/8/35

    (who have rewritten it to be far more correct)
    Ambrosia_angel likes this.

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