Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Will KDM look for and dx OI/POTS etc?

Discussion in 'ME/CFS Doctors' started by justy, Mar 30, 2014.

  1. justy

    justy Senior Member

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    My question is in the title really. I hear a lot of talk on the forums about OI/POTS etc and have seen how improvement can be gained from treating it. Here in the UK there is not much chance to get nayone to look at this. Will KDM consider it at all?
     
    justy, Mar 30, 2014
    #1
  2. Valentijn

    Valentijn Activity Level: 3

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    I think he goes more for the underlying causes (infections), and OI often improves as a result of treating those.
     
    Valentijn, Mar 30, 2014
    #2
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    ANYONE IN THIS GROUP TRIED A CPAP MACHINE FOR DIZZINESS OR POTS? WORKED FOR ME.

    SAN DIEGO #1
     
    SanDiego#1, Mar 30, 2014
    #3
  4. SOC

    SOC

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    No hope you could get a local GP to order at least an aldosterone test? It's not the only OI problem PWME have by any means, but it's a common one that you might get the GP to address (just don't mention CFS :rolleyes:).
     
    SOC, Mar 30, 2014
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He is very aware of OI and POTS as "downstream" symptoms though I haven't heard of him putting it in the actual diagnosis, as it seems to be an effect, not a cause. As @Valentijn said, many find that these get better with treatment of the deeper roots of this disease. (Has been true for me)

    If you wanted him to prescribe a medication to help these symptoms, you could ask. He certainly regards them as real and "pains in the ass." :woot:

    Sushi
     
    Sushi, Mar 30, 2014
    #5
    SOC and Valentijn like this.
  6. justy

    justy Senior Member

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    thanks - just looking to know if I have it really. and whether he would dx - then I could at least do self help measures
     
    justy, Mar 30, 2014
    #6
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you tell him your symptoms, maybe do a poor man's TTT, keep track of your BP and HR for a while and show them to him, that would give him data.

    Sushi
     
    Sushi, Mar 30, 2014
    #7
    Valentijn and SOC like this.

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