The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Is there anything like the mayo clinic in the UK/Europe?

Discussion in 'ME/CFS Doctors' started by Apple, Feb 2, 2017.

  1. Apple

    Apple Senior Member

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    Not a CFS specialist. Somewhere you can stay for a week or two and get a FULL work up. A doctor or a team of doctors looking at the whole picture, not just their little area.

    I have 30+ different symptoms. Some overlapping, some not. I've had confirmed inflammation in my bladder, bowel, nose, ears and blood at different times. but the gastro is not interested in the bladder inflammation, the uro is not interested in the gi inflammation, my GP just sort of shrugs it all off as it's not apparently not severe enough to be a 'problem'. My uro tells me that my bladder symptoms are partially neurological but does not want to refer me to a neuro and neither does my GP.

    I have rheumatological symptoms, neurological symptoms, immunological symptoms, bladder problems, GI problems, cardiac symptoms, autonomic issues, balance issues. Symptoms that don't really fit anywhere. Some fit the diagnosis of ME, Some don't. But no-one is willing to sit down and look at all of it together; the BIG picture. A 10 minute GP appointment is useless. One blood test a year or so is the best I get. No-one is interested. My GP doesn't want to refer me anywhere else as I've seen enough consultants (i've seen 3 in 7 years!)

    I've lost half my teens and most of my twenties and i've had enough. I just want some help. :(
     
  2. Cheesus

    Cheesus Senior Member

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    I also need this. I have unusual symptoms that do not fall under the diagnosis of ME that need to be investigated, but I cannot even find anyone who accepts that the symptoms are part of their field of medicine, never mind get someone to actually investigate them.
     
  3. Apple

    Apple Senior Member

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    It really, really sucks. I know American healthcare has a LOT of problems, but I envy it so much. At least if you have a bad experience with a doctor, you can go and get a second (or third or fourth) opinion without being seen as annoying, NHS money wasting patient. :rolleyes:

    When I win the lottery, I will fly us both to the mayo or wherever in a private jet. :rocket:
     
    Soundthealarm21 and Cheesus like this.
  4. Joh

    Joh Inactivist

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    Please take me with you (I'm only hamster-sized and don't need much space in your :rocket:)!
     
  5. Apple

    Apple Senior Member

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    Of course! :)
     
    Joh likes this.
  6. geraldt52

    geraldt52 Senior Member

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    You might be seriously disappointed. I have heard nothing but bad things about the Mayo Clinic when it comes to CFS...
     
  7. Hip

    Hip Senior Member

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    There may not necessarily be a big picture. You may just have a series of illnesses/conditions, each of which contributes some symptoms, but these illnesses may be independent of each other.

    As an example of independent illnesses:

    My first health problems started with irritable bladder (overactive bladder). Some 6 years later, I then developed irritable bowel syndrome, which also triggered significant anxiety (which IBS is apt to do), and some fatigue in the morning. A few years after, I started getting recurrent urinary tract infections, which would cause a lot of fatigue for a few days each time the infection recurred.

    A few years after that, I caught the virus that would later trigger my ME/CFS; but the first major symptoms this virus triggered in me were anhedonia, emotional flatness and extreme anxiety. Then around 18 months later, I was hit by what appeared to be viral meningitis, probably from the same virus. This meningitis left me with severe ADHD, and some personality change (which meningitis is apt to do). After the meningitis, I soon descended into full ME/CFS.

    Now, if I want to treat all my symptoms and conditions, each condition, and sometimes each symptom, has to be dealt with separately. Treatments that work for IBS do not help my ADHD, for example. And in the case of all my ME/CFS symptoms, there is no one treatment for all of those, but I have found some supplements and drugs that do help specific ME/CFS symptoms.


    The trick is to try to group your various symptoms into specific illnesses/conditions. That way, you can try to target each condition with treatments known to help it.
     
    Last edited: Feb 2, 2017
  8. Soundthealarm21

    Soundthealarm21 Senior Member

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    I don't think she wants it for CFS per se, but to see if there is another answer that her doctors have missed or in addition to CFS.
     
  9. kangaSue

    kangaSue Senior Member

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