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Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
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A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    Thank you! Yes, I have considered Kogelnik, Bateman and Chia for doctors within about 20 hours drive. Obviously, KDM or Peterson would be great, but I'm not holding out hope.
  2. SOC

    SOC Back to work (easy, part-time work)

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    Good luck! FWIW, I've actually found the air travel (although difficult in its own way) to see my current, more distant, specialist causes me less problems than the long car trip to my previous (less distant) specialist. It's probably because the in-transit time is much less.

    That might not be true if I weren't traveling with my husband who takes care of everything. :hug: I do the whole thing in a wheelchair to avoid overexerting and PEMing myself. I've even been known to put on sunglasses and headphones, close my eyes and act like luggage. :p It keeps the stimulus and stress to a minimum. The whole thing is over in a few hours. Riding in a car for hours and hours and hours was much worse.

    ETA: Someone mentioned in a post yesterday that she has a CFS/FMS/Lyme doctor in WA or OR (I'm pretty sure), that she really liked. He's not one of the top docs, but seems reasonable. He encouraged this person to see KDM in Reno, so he seems to know the field. This patient seemed much happier with this local doc than with KDM. ;) That might be a closer doc worth looking into. If I find the thread again, I'll come back here and link it.
    Last edited: Jan 8, 2014
    Valentijn and EMilo like this.
  3. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    @SOC If you see that post again about the WA doc, PLEASE let me know!! and Thanks for the tip about flying. You're right, I'm sure, but I think I might just be too scared to fly right now. I don't know...
  4. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    @SOC, I've searched and searched for that post re a WA or OR doctor and can't find it. I would be so impressed if a doctor here knew who KDM was! If you can think of anything else from that thread (what the title might have been, any key words or phrases), please let me know so I can search a bit better. THank you!!
  5. SOC

    SOC Back to work (easy, part-time work)

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    Check out post #22 in this thread. You could PM Eucalypta to see if she's willing to share her doc's name and phone number with you.

    Anti-anxiety med can help with fear of flying. You'd only need to take them while you are flying, not all the time. :)
    EMilo likes this.
  6. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    Thank you so much @SOC! I have done that. Also happy you showed me that conversation because I was seriously considering seeing KDM in Reno, but I can't afford it by the sounds of it. I really appreciate your help!

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