National ME Center (UK)

Discussion in 'Fibromyalgia Main Forum' started by Cambird, Mar 4, 2006.

  1. Cambird

    Cambird New Member

    Hi everyone,

    Is there anyone here who has been to the National ME Center in the UK? I am interested in knowing if they are any help and especially if they view CFS as a psychological illness as the NHS does. I am house-bound/bed-bound and I do not want to make the journey if they are useless or rude! (It's also expensive)
    I'd really apreciate hearing any experiences.

    Also, this is my first post and I'd like to say this site has been a really helpful source of information and opnions. There have been lots of times I've had some stupid symptom worrying me and found other people here with the same thing and I'd like to thank you for that.

    Lucy
  2. anakinkaid

    anakinkaid New Member

    ME in England is NOT based on the "it is all in your head" approach. If you search out the Nightingale Center in Canada on the web you will find some excellent material. They might also help locate the UK Center you are searching for.

    ME seems to be another thread in the CFIDS story and one that can offer alot of useful information as well as background on this illness. Good luck on your research (and travels).

    Ana
  3. angeldust

    angeldust New Member

    I haven't been there myself but know other who have. In reality you probably wont get anything much different from what you get on the NHS.

    They'll try and improve your sleep, ensure that you are pacing yourself properly (which is very difficult when you are severely affected), teach you new ways of combating stress, physiotherapy, graded activity, they'll probably recommend antidepressants to improve sleep and energy levels and help with any anxiety/depression. All in all there's no quick fix, it requires patience, hard work and determination and you need to be ready for it.

    I'm sure they used to take in-patients, which might be good if the jouneys going to take weeks to recover from - but costly! There are benefits in paying for your own treatment - you get more time with the staff, they wont be rude to you and they generally make a bit more of an effort to tailor things for you as there aren't the restrictions imposed by the NHS.

    I dont think everyone who works in the NHS thinks cfs is purely psychological, although I think we would all agree it can have a profound psychological impact and our ability to cope with stress is greatly reduced.

    I would give them a call, or make an appointment and see what they can offer you. Let us know how it goes.
  4. STML

    STML New Member

    Hi1,
    Don't know anything about national ME centre but can give you info about private clinics if that is an option,am simalar age to you and am improving so happy to help, obviously no promises made,

    take care,
    STMLx
  5. Cambird

    Cambird New Member

    Thanks for all your responses, I've only just started using forums and it's really nice to hear from people.

    To Prickles: The N ME Center is in Harold Wood in Essex, about an hours drive from me.

    I have never got ANYTHING on the NHS. I think because it took years to get diagnosed and then I was with a doctor who didn't belive me and now I've been ill for more than 15 years. I would like basic help with management and pacing and just some good advice. Thanks for telling me it has helped people, that's all I needed and I will try and get an appointment.

    P.s. I didn't mean to be so overbearing! I just meant the official line of the NHS seems to be CFS is psychological, although they are getting a lot better. And I admit I may be out of touch. I've got a great GP who is very well informed and helpful.
  6. davebhoy

    davebhoy New Member

    i think its near romford

    i went a few years ago. it is quite good, but its a bit of a bugger to get to go - you have to get referred my your gp and as it costs their primary care trust quite a lot to send you there you need to have an enlightened gp.

    i would suggest you try and go if you can.
  7. Cromwell

    Cromwell New Member

    I did a summer school in Keele years ago. Just wanted to but in on that. Lovely university then, hope it still is.

    Love Anne C
  8. KelB

    KelB New Member

    "ME in England is NOT based on the "it is all in your head" approach"

    Sorry Ana, I'm in the UK and the NHS approach is mainly the psychological one. There is the occasional honourable exception (luckily my local NHS centre at Wareham Hospital in Dorset), but most NHS units treat ME/CFS as a psychological condition and offer only a non-specific CBT and GET (which actually makes it worse).