1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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UK sufferers can you help me?

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Oct 16, 2013.

  1. Fogbuster

    Fogbuster Senior Member

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    Who would you recommend I see to try and get to the root of my OI?

    Who would you also recommend I see to treat both gut (sibo and candida overgrowth) and OI issues in a combined targeted treatment?

    Please feel free to ask any neccesary questions.

    Best wishes
    Jamie

    P.S I am based in the south west.
  2. Mark

    Mark Acting CEO

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    Sofa, UK
    Sorry you didn't get an answer here yet Jamie. I don't have much to recommend I'm afraid; I'm posting mainly to bump your thread and give it another chance. My only ideas are: I understand that Julia Newton has a clinic diagnosing and treating POTS - it couldn't be further away from you in the UK, it's up in Newcastle (!), but it's the only one I'm aware of; and @Russell may have some local knowledge of doctors in the south-west.

    I hope somebody out there can help you.
  3. Fogbuster

    Fogbuster Senior Member

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    Thanks very much Mark for trying to help! I hope that someone will try and help soon enough.
  4. Fogbuster

    Fogbuster Senior Member

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  5. brenda

    brenda Senior Member

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    @jamie

    I don't think anyone in the UK is much help (I have been going to Breakspear) though Dr Myhill seems to be of some help for some if she was taking on new patients. My advice is to read her site for testing and perhaps think of going to Belgium if you think that a doctor can do anything. I have helped myself more than any doctor has done.
  6. peggy-sue

    peggy-sue

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    Scotland
    The other useful website is Hummingbird.
    There really is nothing in the uk at all.

    I produced evidence of wonky low blood pressure, not increasing when I stand up, but my pulse racing instead, from a monitor i bought, and showed it to my gp. I also told him I kept fainting.

    He did comment that it "seemed a bit peculiar", but still refused to even do an ecg trace on me, far less give me a holter monitor.
  7. Indigophoton

    Indigophoton

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    The nutrition side of the Optimum Health Clinic can be quite good; they are very knowledgeable, experienced, keep up to date with the research, can arrange some testing, and do have some solutions to specific issues.

    I found them mostly helpful a few years ago. Similar to Sarah Myhill's approach, whose waiting list was too long at the time I was looking. Might be worth a try.

    I don't think they can prescribe drugs though, although if I remember correctly they recently brought in a medical doctor.
  8. Indigophoton

    Indigophoton

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    Same here: my previous GP just kept repeating "We don't consider low blood pressure to be a problem", despite all the symptoms it was causing, and despite my having been given tablets to raise it in the past!
  9. Countrygirl

    Countrygirl Senior Member

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    Hello Jamie,

    I also live in the South West, but this is a medical wilderness for those of us with ME and OI.

    I'm sorry not to be the bearer of better news.

    C.G.
  10. Esther12

    Esther12 Senior Member

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    I think that there's growing awareness of the importance of autonomic problems for a range of health problems, from old age to CFS, so it could be that availability of testing and treatment is improving?

    I just googled to have a look, and found that they assess people with the tilt table test in Bath: http://www.ruh.nhs.uk/patients/services/clinics/cardiac_centre_clinics/tilt_table_test.asp

    Is that anywhere near you?

    I'd be cautious of a lot of private and alternative stuff. To me, Brakespear seems expensive and a bit dodgy, with lots of people reporting spending a lot and getting nothing from them, Optimum Health clinic looks quacky to me too.

    The way the NHS treats CFS is often terrible, and I'd advise real scepticism (and perhaps outright hostility too), but they are at least free (to you), so it's probably worth trying to see what is available there for your OI problems first.

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