HELP? Any specialists in EUROPE????

Discussion in 'Fibromyalgia Main Forum' started by ballerinagrl, Aug 5, 2003.

  1. ballerinagrl

    ballerinagrl New Member


    I'm in the UK. My daughter has had CFIDS for almost ten years. She is now 22. It has taken so much of her life from her already, and each month she seems to deteriorate. Her GP told us last week he would pay for her to be referred to any CF specialist in Europe, but he says he has no idea how to find out where specialists are and suggested we try the internet.

    If anyone knows of a specialist ANYWHERE in Europe, I would be so grateful for that information.

    Thankyou to anyone who feels able to help ...
  2. nickname

    nickname New Member

    Everytime, it is devastating to hear of children with this disease - at 22, she is still a child. I will ditto everything that Slowgirl said - my consultant is the same, and I've been down the same route with the ME centre, again, no use at all.

    Could you post a bit more detail here about your daughter's symptoms. M.E. (cfs. cfds etc) is such a complex, multi disciplinary disease. Sometimes, it is useful to have the alternative health care people on side, say if dietry factors are a feature. It does all depend if this is going to be NHS or private as to what may be on offer and from whom, as Slowgirl says. It might help us point u in some sort of direction. One things for sure, we all end up doing our own research in order to try and get better. There is a mountain of information on this board alone - just key in any subject into the search engine, say for instance digestive problems, and you'll see what I mean.

    Having had this for over 10 years myself, one learns the ropes a bit, but I never seem to become an expert. We can all help though here on this board - especially the UK'ers, helping you to try and find local people to you.

    Is your daughter a member of that Tymes group (may have got the spelling wrong) - the support group for young people, connected with the ME Assoc. Tansy here may know more.

    If any of us can help, I know we will.

    Best wishes

  3. ballerinagrl

    ballerinagrl New Member

    We live in Birmingham.

    As to NHS or private, I guess if in Britain he probably would only fund NHS, but for elsewhere in Europe I guess it wouldn't matter ...

    Thanks for the info on specialist in Brussells.
    I also checked the recommended doctors list and found 2 more in Belgium and one in Essex, UK.

    I'll look into any names and numbers anyone can contribute.

    Thanks again for the help!
  4. tansy

    tansy New Member

    both Prof Findley and Dr David Smith, you need a doctor that undersantds ME/CFS will look at what is going on and treat what can be treated. Sadly there is not a lot to offer on the NHS but someone may yet come up with a doctor who is worth seeing.

    Dr Sarah Myhill is a GP in Wales and medical advisor to Action for ME. She has a very informative web site and does treat some aspects of this DD, her approach is fairly holistic.

    I have heard of the doctor in Belgium and he does appear to actually treat his patients and have some degree of success.

    Dr Julian Kenyon of the Dove Clinic near Winchester and Harley Street London does see some NHS funded patients but that means a limit on what he will test for and treat. Might be worth ringing the clinincs to see what he has to offer. He also has a web site so you can look at the treatment approaches he uses.

    I think you need to think about what appears to need treatment because then you would have a better idea as to who would be most likely to help. Some patients have problems due to chronic candida, leaky gut, allergies +++. There's a lot you can probably do in the meantime, it will seem like a minefield as you begin looking into possible therapies, but you may find one or two stand out more than the others.

    Good luck; I know what it is like to see one's child suffer, it's worse than when going through it all ourselves.



    for the under 25s

    AYME Association of Young People with ME (reg charity 1082059),
    P.O Box 605,
    Milton Keynes,
    MK6 3EX.
    Tel: 01908 373300

    AYME (pronounced 'aim') is a UK-based independent registered charity dedicated to giving help, friendship, support and vital contact to children and young people with Myalgic Encephalopathy (M.E). AYME's activities. It is run by the young members themselves, overseen by their Director.


    Young Action Online / Tymes Trust
    PO Box 4347
    CM4 9TE
    tel/fax 01245 401 080

    [This Message was Edited on 08/06/2003]
    [This Message was Edited on 08/06/2003]
    [This Message was Edited on 08/06/2003]
    [This Message was Edited on 08/07/2003]
  5. ballerinagrl

    ballerinagrl New Member

    Just wanted to say thank you to all those who have responded with ideas, names, centres etcetera. We will investigate every possibilty!

  6. tansy

    tansy New Member

    There are two more young people's contacts I found through the Action for ME web site. These are -
    otherslike me.

    AFME's site also has a limk to braingog which is both informative and upbeat. Not specifically for young people but it has a youthful approach.

    Han van de Braak offers an intergrated medicine approach to treating ME/CFs. He charges a fixed fee of £165.50 for a 90 minute consult with a variety of controversial but impressive tests. He has a web site for bioterrain and his tel no is 01858 465 005. His practice is in Market Harborough, Leics.

    Do hope you find the right doctor soon, it is so difficult in the UK. Make sure your MP is told about these difficulties and that all we're usually offered is cbt and atidepressants. It's important we get the message across that we need REAL treatments.


    [This Message was Edited on 08/09/2003]
    [This Message was Edited on 08/09/2003]