Is it a new disease or its CFS ?

patient.journey

patient.journey

Senior Member
Messages
443
8eraser8 said:
Omar did you or anyone try to contact the following virology centers? Since this is unknown virus, we should focus on virologist not standard doctors, this is above their knowledge

Center for Virology at Mount Sinai School of Medicine
Madison Avenue
New York, NY 10029
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No cause i dont live there but am trying my best with big hospitals here ,,,
 
patient.journey

patient.journey

Senior Member
Messages
443
ronR said:
www.thebody.com/Forums/AIDS/SafeSex/Q222111.html

www.thebody.com/Forums/AIDS/Labs/Q6690.html

www.thebody.com/Forums/AIDS/SafeSex/Q210190.html?ic=2003

www.thebody.com/Forums/AIDS/Labs/Q6841.html?ic=2003

www.thebody.com/Forums/AIDS/SafeSex/Q220169.html

www.thebody.com/Forums/AIDS/Meds/Q147570.html?ic=2003

www.thebody.com/Forums/AIDS/SafeSex/Q224750.html

www.thebody.com/Forums/AIDS/SafeSex/Q219812.html
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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
 
S

Survivor84

Senior Member
Messages
108
Omar88 said:
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
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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.
 
8

8eraser8

Messages
80
Omar88 said:
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
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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
 
8

8eraser8

Messages
80
Teedot said:
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.
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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!
 
8

8eraser8

Messages
80
Omar88 said:
No cause i dont live there but am trying my best with big hospitals here ,,,
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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

8eraser8

Messages
80
Teedot said:
Should we continue to label it HIV like virus. I think when ppl see that they want to read more
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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......
 
ronR

ronR

Messages
76
Location
India / singapore
8eraser8 said:
Ron 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.
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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 .
 
S

Survivor84

Senior Member
Messages
108
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
 
S

Sherezade

Messages
97
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. :(
 
S

Survivor84

Senior Member
Messages
108
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.
 
ronR

ronR

Messages
76
Location
India / singapore
Teedot said:
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
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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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