Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Needed: Good Summary of ME/CFS for new doctor

Discussion in 'General ME/CFS Discussion' started by LaurelB, Apr 16, 2016.

  1. LaurelB

    LaurelB Senior Member

    Messages:
    126
    Likes:
    20
    Hi,

    I have severe ME and am in a bit of a predicament at the moment, as my current doctor (who makes housecalls) is moving out of state at the end of this week. I am therefore searching for a new doctor (Tucson area) who is both ME aware and willing to make housecalls (going to an in-office appointment is simply not an option for me). As one might expect, this search has proved very difficult.

    For the time being, I'm likely going to have to go with any doctor willing to see me at home, whether ME aware or not. I'm looking for a summary of the disease that I can give to a new MD that describes the seriousness of the illness and also fully points out the dangers of GET, particularly for those who are severely ill.

    I am aware of the IACFS primer, but am concerned because it recommends exercise, even for the bedbound. I"ve been there and done that, and it made me substantially worse. The primer is also very long, and I would like something a bit shorter and thus more likely to be read.

    I've checked various patient agency websites but haven't found one that offers what I'm looking for. Any tips would be very helpful. Thank you!
     
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,893
    Forbin, Kati, Comet and 4 others like this.
  3. LaurelB

    LaurelB Senior Member

    Messages:
    126
    Likes:
    20
    Thanks, Valentjin. I didn't realize the IOM had put together a clinician's guide. I will print it out -- thanks for the tip!!
     
    Valentijn likes this.
  4. ahmo

    ahmo Senior Member

    Messages:
    4,444
    Likes:
    6,803
    Northcoast NSW, Australia
    JaimeS, LaurelB and Comet like this.
  5. LaurelB

    LaurelB Senior Member

    Messages:
    126
    Likes:
    20
    Thank you, Ahmo. Those links are quite helpful as well.
     
  6. Kati

    Kati Patient in training

    Messages:
    5,475
    Likes:
    19,644
    @LaurelB So sorry your dr is moving away. It sounds like it was a good one. Wishing you best of luck with new dr. :hug:
     
  7. Forbin

    Forbin Senior Member

    Messages:
    964
    Likes:
    4,062
    Earlier this year, I wanted to let my cardiologist know about the IOM report. I know that doctors hate to get lots of pages of things, so I just handed him the 2-page "Key Facts.pdf" (see below).

    He was kind of stunned by the 836,000 - 2,500,000 prevalence numbers. He then asked me if there was a diagnostic algorithm for SEID, and that's when I whipped out the 16 page Clinicians Guide (well, he did ASK for it :)). The diagnostic algorithm appears on page 10 of the Clinicians Guide.


    ME/CFS is not really something he sees people for, but he did seem interested.

    [Clicking on the link below will download the Key Facts pdf...]

    http://www.nap.edu/html/19012/MECFS_KeyFacts.pdf
     
    Last edited: Apr 17, 2016
    Jennifer J and Valentijn like this.
  8. LaurelB

    LaurelB Senior Member

    Messages:
    126
    Likes:
    20
    @Kati -- Thank you, I really need the good luck. :) Tons going on all at once right now. Fingers crossed it all works out.

    @Forbin, thanks for the link to the IOM Key Facts page. I think I will start with that, and have the longer articles ready if he/she is open to and willing to read them.
     

See more popular forum discussions.

Share This Page