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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Map of US Based ME/CFS, POTS, and Lyme Doctors (Feedback Please!)

Discussion in 'ME/CFS Doctors' started by Jesse2233, Oct 22, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Version 2: Updated with additions and retired drs removed. Thanks for the feedback, keep it coming!

    upload_2017-10-24_23-26-18.png
     

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    Last edited: Oct 25, 2017
    gabriella17, ivorin, Hip and 17 others like this.
  2. *GG*

    *GG* Senior Member

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    I am missing how to let people know which Dr I see, and perhaps they want to consider?

    My impression is that the old Co-cure website is not readily available? I know I found it helpful many years ago, think it needs to be backed up/updated?

    GG
     
    Jesse2233 likes this.
  3. Jesse2233

    Jesse2233 Senior Member

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    Just reply to this thread if you've got someone I should add
     
  4. barbc56

    barbc56 Senior Member

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    Unfortunately, I am disappointed to see doctors such as KDM included with the science based doctors. Maybe it would be more helpful to make this distinction? Maybe include whether a lyme doctor is ILADS. or IDSA doctors?

    Not making a value judgement but people have different criteria when looking for a doctor.
     
    Last edited: Oct 22, 2017
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  5. Jesse2233

    Jesse2233 Senior Member

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    Thanks @barbc56

    Tell me more about ILADS and IDSA, still learning about Lyme
     
  6. Diwi9

    Diwi9 Senior Member

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    Dr. Nathan Holladay in Salt Lake City.

    ETA: He treats ME/CFS, but as far as I know, focusses on POTS symptoms. Others may know more.
     
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  7. Wally

    Wally Senior Member

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    @Jesse2233 - This is great to be able to see see these doctors on a map. Unfortunately, this list of doctors with a specialization or interest in this illness is so small and to add to that issue - there is one doctor on the map that I am aware is no longer practicing. See info. on Dr. Anthony Komaroff’s retirement from practice inNovember 2016. See, https://www.askdoctork.com/

    Are you going to try to set up similar maps for other countries?
     
  8. Jesse2233

    Jesse2233 Senior Member

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    Yes I plan on doing one for Europe, Africa, Oceania, and Asia

    I'm not familiar with South America unfortunately
     
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  9. Molly98

    Molly98 Senior Member

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    being in the UK, I am so jealous :(
     
    ivorin, Joh, *GG* and 1 other person like this.
  10. Wally

    Wally Senior Member

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    @barbc56 - Can you explain what you meant when you said the following about this doctor?
    See, Reply #4 above.
     
    justy likes this.
  11. Wally

    Wally Senior Member

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    @Jesse2233 - Are you going to include contact info. about these doctors? Do you need help with collecting this info.?

    When you complete the map will you date it to show the time frame that the info. was collected? Will you be periodically updating the map if you get new info. either from the patient community or by checking back in with these doctors to see if the information is still current? If yes, will you include a new date on the map to show there have been changes to the map, so patients will know how current the information might be?

    Another idea for when the map is complete is to ask if PR may be willing to link to the map via the Resource button on the front page of the website.

    Not sure if you were thinking about posting the map through the Forum, which might be a good place to get people to discuss the map (i.e. suggest new doctors to add or update info. on the existing ones).

    Just really like your idea and I thought it could be a resource that would be really helpful to the patuent community via maximum exposure/accessibility on the PR Forum and front page of the PR website.
     
    Mary, justy, Isaiah 58:11 and 4 others like this.
  12. Jesse2233

    Jesse2233 Senior Member

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    @Wally these are all great ideas! yes to everything :)
     
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  13. Wally

    Wally Senior Member

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    @*GG* - I thought the Co-cure site may not have been updated since the owner/manager of the site became ill about 2 years ago and sadly passed away in November 2016. See, http://forums.phoenixrising.me/inde...-of-raymond-f-colliton-co-cure-project.42737/
    Maybe someone else on the Forum will have more information on whether or not someone else has stepped up to maintain or update this site.
     
  14. Wally

    Wally Senior Member

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    @Jesse2233 - Feel free to start a “Conversation” (PM) with me when you are ready to discuss getting some help with this project.
     
  15. Wally

    Wally Senior Member

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    @Jesse2233 - I feel like I have had a PM with someone from South America, I think there were from Brazil. I will check to see if I saved this conversation or perhaps it was on another site. Anyhow, perhaps a better way to see if anyone can help with this region is to start a new thread asking if there are any Forum members from South America, who might be interested in providing information for your map project identifying ME/CFS doctors in this part of the world.
     
  16. shannah

    shannah Senior Member

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  17. adelheid55

    adelheid55 Senior Member

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    Why shouldn't Dr. de Meirleir be included? I cannot see that he is not working as a science based doctor.
    I know a lot of PR members here of many countries who see him regularly.
     
    justy likes this.
  18. Gemini

    Gemini Senior Member

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    Dr. Peter Rowe, Johns Hopkins, Baltimore, MD.

    Dr. Podell shown on map in New York is located in New Jersey.
     
  19. duncan

    duncan Senior Member

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    I thought I heard Podell retired.

    Don't forget Ken Leigner, Lyme Dr in Rye New York.
    John Aucott Lyme Dr in Baltimore.
    I'm not sure if Mark Davis sees patients, but I know he is active in both Lyme and ME/CFS - and of course he is in California.
    You have Eugene Eskow a Lyme Dr in New Jersey,
     
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  20. jstash

    jstash Senior Member

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    Maybe consider creating this on Google maps instead?

    Edit: just thinking it'd mean that people could actually see the address - and then plot a route to it from their own home. Also, it's more disability friendly - as the map would automatically render in an optimised way depending on what device the user has, which an image will never do. Just a thought.
     
    Last edited: Oct 23, 2017
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