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Is it a new disease or its CFS ?

Discussion in 'Immunological' started by Omar88, Aug 26, 2012.

  1. Omar88

    Omar88 Senior Member

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    No cause i dont live there but am trying my best with big hospitals here ,,,
  2. Omar88

    Omar88 Senior Member

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    I read such cases and its hurts that no body cares, i think we are a lone until we do something together and my idea is getting big number so we can share some money and pick 3 of us or more if the number get bigger and see a doctor who would care
  3. Survivor84

    Survivor84 Senior Member

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    Hoping and praying that 8eraser8 will have a good shot with the virologist in 3 weeks. Lets see if we can find a virologist willing to help all of us. What other options are there, look how far back some of those stories go.
  4. 8eraser8

    8eraser8

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    Omar, we need to keep the momentum going, people tend to get discouraged quickly with this stuff and see dark thoughts all the time, when I think about this, I have so many negative thoughts, ideally we can find a virologist, and we group funds and finance his research, WE PAY HIM
  5. 8eraser8

    8eraser8

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    Thanks Teedot, I really hope I get an outcome from my meeting with the virologist, I will also meet a top infectious disease dr. There are not many options unfortunately Teedot, we need to take our destiny in our hands. If we do not, who else will. we cannot expect others to do the job for us!
  6. 8eraser8

    8eraser8

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  7. 8eraser8

    8eraser8

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    Omar thanks for the links. I suggest we create a google groups page, a facebook page, a tweeter account and what ever social media group which can help us group together so we can have a voice.
  8. Survivor84

    Survivor84 Senior Member

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    Should we continue to label it HIV like virus. I think when ppl see that they want to read more
  9. 8eraser8

    8eraser8

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    Hiv Like Virus is good you are right, this draws attention, a facebook page, tweeter, etc... account would be great to bring all of us together......
  10. ronR

    ronR

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    India / singapore
    Welcome
    There are many more such links of ther forums, where people are struggling with this disease/syndrome.
    We are not alone, only thing we have to come together .
  11. ronR

    ronR

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    India / singapore
  12. Survivor84

    Survivor84 Senior Member

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    Go to hiv like virus on fb and like, and or try and get these people ron to go and look at the page,it is still a work in progress
  13. Survivor84

    Survivor84 Senior Member

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    i will copy and paste the stories if they inbox me, so that they can remain private
  14. Sherezade

    Sherezade Senior Member

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    Some days ago i did the autoinmunity tests that my infectologist ordered... I'll get the results in one week and a half. I'm very scared of the results, but at this point i wish that anything that is wrong with me just shows out in the tests in order to get the proper treatment. I'll let you know the results. :(
  15. Survivor84

    Survivor84 Senior Member

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    Good Luck Sherezade
  16. Survivor84

    Survivor84 Senior Member

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  17. Survivor84

    Survivor84 Senior Member

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    http://www.cfsstraighttalk.blogspot.com/ I know some on you have heard of her before. Check this page out. I believe our condition is known about,it is being denied, most likely for many reasons. I am not saying its hiv
  18. Omar88

    Omar88 Senior Member

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    I talked to this woman she got her theories that i didnt believe in all of it but she lost and trying to figure out why so we cant blame her !
    Yocheved likes this.
  19. Survivor84

    Survivor84 Senior Member

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    Omar,she makes great points, she is on the right path. Maybe you dont believe in them all. But she is really not in a much different situation then us. She suggested that we write to the government http://www.whitehouse.gov/contact/
    http://www.house.gov/representatives/
    http://www.senate.gov/general/contact_information/senators_cfm.cfm, look anything can help and at least we can say we tried. We shall continue to research through doctors and virologist, but maybe writing,emailing etc. to organizations and what not will help as well.
    Yocheved likes this.
  20. ronR

    ronR

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    Our case is different from normal CFS patients ....we don't have such severity, people even after 14yrs don't have cfs ,in case of this hiv like virus, but they have some constant muscle twitching etc . And its some what contagious

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