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.
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Should I fly to Africa to get Suramin?

Discussion in 'General Treatment' started by silky, Jul 27, 2017.

  1. silky

    silky a gentle soul here to learn

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    Got inspired on the other thread :nerd:

    Ok so here's my crazy plan
    1. Get the best travelers insurance there is!
    2. Book a flight to Swaziland, home to the best hospital in Africa: Gambro Healthcare
    3. Load up on IV saline, coq10, d-ribose, carnitine, and b12 shots
    4. Pop a trazie, hop on a 747 and then bon voyage Swaziland!
    5. Check into the Royal Swazi Spa, a four star resort in the lush and verdant Swazi Valley
    6. Rest up for several days!
    7. Meet a handsome Swazi man with a kind heart by the spa pool;)
    8. And then "oh dear I feel terribly ill... can you take me to Gambro hospital?"
    9. And then "yes Mr Doctor, I'm experiencing fever, headache, itching, mental confusion, personality or behavior changes, problems with coordination, skin rash, and/or swollen lymph nodes. Could this be trypanosomiasis? You know African sleeping sickness? I was bitten by a Tsetse fly back at the hotel"
    10. And then when they bring in the glowing gold bottle of beautiful Suramin I tell my new Swazi boyfriend to make sure they only give me a small dose because I'm very sensitive
    11. Enjoy the rapid switch off of my Dauer state as all my pyruvate dehydrogenase enzymes kick into full gear and I emerge from hibernation like a victorious c elegan!
    12. Luxuriate in the rush of blood back into my brainstem and hippocampus!
    13. Lavish as rapid vascular remodeling and white matter regrowth repairs my autonomic functioning!
    14. Marry my Swazi boyfriend, live in a floor at the Royal Swazi Spa, and mysteriously come down with African sleeping sickness once a month
    15. Write Robert Naviaux an email saying "thank you very much!"
     
    Last edited: Jul 27, 2017
    manasi12, maryb, GreyOwl and 24 others like this.
  2. silky

    silky a gentle soul here to learn

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    Pictures from my Swazi vacation :)

    [​IMG]
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    [​IMG]
     
    GreyOwl, rebar, cyclamen and 15 others like this.
  3. msf

    msf Senior Member

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    I think this is tongue-in-cheek, but perhaps you should wait to see if Suramin actually helps (and doesn´t harm) ME patients before you buy your tickets.
     
    Never Give Up, Mary and trishrhymes like this.
  4. melihtas

    melihtas Senior Member

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    Istanbul Turkey
    A more recent photo of Suramin. :D

    [​IMG]
     
  5. adreno

    adreno PR activist

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    Sounds like a good plan. What could go wrong?
     
    GreyOwl, Stretched, Webdog and 16 others like this.
  6. Forbin

    Forbin Senior Member

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    Well, it makes more sense than my plan. Now, how do I get out of Suriname?
     
    halcyon, Stretched, Webdog and 13 others like this.
  7. ukxmrv

    ukxmrv Senior Member

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    I think a rich inner fantasy life is a great thing to have with this disease

    I'm going to incorporate your ideas into my daily musings now!
     
  8. msf

    msf Senior Member

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    Having looked at the photos of your trip, I would say the most dangerous part would have to be the transportation.
     
  9. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    I'll take the plane, you can have the Tsetse fly. ;)
     
  10. keenly

    keenly Senior Member

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  11. msf

    msf Senior Member

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    Deal. I´ve never heard of a Tsetse fly crashing.
     
  12. silky

    silky a gentle soul here to learn

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    It's not gold :(
     
    Little Bluestem and ErdemX like this.
  13. Alvin2

    Alvin2 If humans were rational...

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    Desperation is not a good place to be :cry:
     
  14. junkcrap50

    junkcrap50 Senior Member

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    Well... My tongue-in-cheek plan would be to buy Suramin off of the Deep/Dark Web (Look up articles about on Tech News websites. Not as sketchy as you'd think.), but I like the style in your plan!
     
    Last edited: Jul 27, 2017
    Stretched likes this.
  15. silky

    silky a gentle soul here to learn

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    Wow what a concept. Are you really thinking of doing that?
     
  16. wastwater

    wastwater Senior Member

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    What could possibly go wrong
     
  17. silky

    silky a gentle soul here to learn

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    1. I might actually get bit by a Testse fly
    2. Dr Naviaux might not agree to officiate the wedding :(
     
  18. junkcrap50

    junkcrap50 Senior Member

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    Lol no, of course not. If Davis and Naviaux come out saying it's the answer/cure and there are studies where Suramin works for CFS and has guidelines, then maybe I'd do it. However, there's too much risk for me (in regards to Suramin, not the black market).

    The black market on the deep/dark web is illegal, FYI. But they have sites that are like amazon, with reviews of sellers and sellers who want to keep customers coming back and happy. Plus, for medications, its usually the real deal in the original packaging. So, I imagine the Suramin would be either stolen from WHO or picked up in Africa and sent over. I doubt it's even for sale on the black market, but someone would probably acquire it for you for a price.

    So, no. I'm not serious about it and not planning on doing it, though I have given it some thought.
     
  19. silky

    silky a gentle soul here to learn

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    Silky slowly crept along the corridor, eyes peeled for the WHO assasins guarding the precious vials of Suramin.

    A voice began to speak in her earbud

    "Silky, it's Dr Naviaux. We've discovered an alternate route into the Suramin treasure room. You'll need to pull yourself up into the ventilation tunnels and then slowly lower yourself into the control room. It's going to be difficult with your POTS but you can do it!"

    Silky rolled her eyes. Why the hell had she agreed to this. Couldn't they have sent a young healthy UCSD grad student?
     
    Tally, ballard, drewmaster and 4 others like this.
  20. wastwater

    wastwater Senior Member

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    It works on reverse transcriptase maybe it might do something then
     

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