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Author Topic: Keeping track of progress  (Read 2447 times)

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Offline wtfimpoz

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Keeping track of progress
« on: November 30, 2010, 05:27:08 PM »
There sure are a lot of things happening in HIV research.  Much of it seems to fade in and out of our consciousness.  Presumed breakthroughs disappear into the nether, only to reappear years later when trials restart.  Is there are a centralized website that provides a simplified way to understand what major experiments are ongoing, how long they've been ongoing, etc?  This seems like the sorta thing which could be tracked quickly and efficiently on a spreadsheet.  It might give us some idea as to whether or not there really is a "renewed interest in finding a cure", and if there is any progress.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Theyer

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Re: Keeping track of progress
« Reply #1 on: November 30, 2010, 06:11:38 PM »
NAM  National Aids Manual a UK based organization ongoing publication . I find  it very useful , you can contact them on info@nam.org.uk  I have no idea about , sorry , about non UK access to all they provide.

Hope this proves useful, wtfimpoz
t
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Inchlingblue

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Re: Keeping track of progress
« Reply #2 on: November 30, 2010, 10:10:19 PM »
In March of last year, in the journal Science, a group of leading HIV researchers, along with Martin Delaney wrote a piece advocating for a cure in which they called for:

a collaboration between academic researchers, clinicians, the pharmaceutical industry, and community advocates in a public-private partnership. While the National Institutes of Health currently provides funding to specific investigators working on eradication, to date there has been no concerted cooperative effort.

Such a "collaboratory" would involve sharing data and resources in a common effort to find the elusive permanent cure that could eliminate the need for lifelong therapy. The Treatment Action Group also recently called on researchers to devote more attention to a cure.


I'm not sure if there's been any progress on that front.

LINK:

HIV/AIDS Experts and Advocates Say Research Should Focus on a Cure

http://www.hivandhepatitis.com/recent/2009/032009_a.html
« Last Edit: November 30, 2010, 10:28:45 PM by Inchlingblue »

Offline ElZorro

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Re: Keeping track of progress
« Reply #3 on: November 30, 2010, 11:03:30 PM »
World AIDS Day Question: How Close Are We to a Cure?

Contains a brief summary with links to many of the topics we've discussed out here.

http://www.aolnews.com/surge-desk/article/world-aids-day-question-how-close-are-we-to-a-cure/19738171

Offline Ann

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Re: Keeping track of progress
« Reply #4 on: December 01, 2010, 12:07:50 AM »
Theoretically, this forum would be the ideal place if 1) people gave accurate, descriptive titles to their threads and 2) people didn't post threads like this one here.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wtfimpoz

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Re: Keeping track of progress
« Reply #5 on: December 01, 2010, 12:48:46 AM »
Where would you have posted this, and how would you have titled it then Ann?  And what I'm referring to is a centralized source which breaks down the information in an easy to reference format, not a running commentary on indivual studies and their various links.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Keeping track of progress
« Reply #6 on: December 01, 2010, 07:39:48 AM »
Where would you have posted this, and how would you have titled it then Ann?  And what I'm referring to is a centralized source which breaks down the information in an easy to reference format, not a running commentary on indivual studies and their various links.

Oh don't mind me, I was just expressing my general frustration over people not following the Research forum's ground rules (found in the Welcome thread), particularly this one...

Quote
When posting new threads here in the Research Forum, please give your thread a title that accurately describes what it's about. Use the name of the trial (or study). This makes it easier for us to keep subjects in one thread, without having three or four threads about the same research. This makes it easier for everyone to find the research news they're interested in.

We're constantly ending up with several threads all on one research study. It just makes this forum harder to navigate and it makes things more difficult to find.

I don't know of any website that specifically concentrates on hiv research news, although all the main sites such as this one, hivandhepatitis.com and aidsmap all have their news sections. It's just not purely research news. That's why this forum was created - to have a central place to go to for the the latest research news. Hence my frustration.

Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline geobee

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Re: Keeping track of progress
« Reply #7 on: December 01, 2010, 12:15:37 PM »
To Ann and the crew at AIDSMeds --  This forum is wonderful.  Thank you for the work in moderating and keeping it going.  I read it every day and it matters to me...a lot.  I love all the thoughtful "regulars" who post and it really makes me feel part of a community and not feel alone when living with this disease.  You are making a difference to me and to many others.

Offline hotpuppy

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Re: Keeping track of progress
« Reply #8 on: December 05, 2010, 07:12:48 PM »
Just keep in mind..... research moves at a glacial pace... so a "cure" today might take 15 years to get to market..... 

Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline wtfimpoz

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Re: Keeping track of progress
« Reply #9 on: December 06, 2010, 12:00:09 AM »
Interesting.  I seem less assured that the current crop of research will yield a cure than most who read this forum, but I honestly hadn't considered that they'd sit on it for an extended period of time if they did make a discovery.  My understanding is that protease inhibitors were developed in reaction to the theory that three drugs would inhibit the virus' replication, and that they were basically distributed en masse as soon as the theory proved true. Given the rather dire long term consequences of the virus, I figured they'd do the same for any "cure", but you bring up a good point.
 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Miss Philicia

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Re: Keeping track of progress
« Reply #10 on: December 06, 2010, 12:12:23 AM »
Do you know what happened when they rushed the first protease inhibitor through the FDA approval process in 1995 -- it caused patients like me to develop resistance quickly not just to that drug, but to the entire (forthcoming) rest of the PIs.  Why? Because the first formulation by Roche was badly formulated and not absorbed in the bloodstream to the appropriate levels, and then they re-formulated it a year and half later. Whoops.  So it took me a further DECADE to suppress my viral load, and by that time it was 18 years after my estimated infection year.

Careful what you wish for with such things.
« Last Edit: December 06, 2010, 12:14:08 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline wtfimpoz

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Re: Keeping track of progress
« Reply #11 on: December 06, 2010, 01:02:00 AM »
I didn't know about your case, or the misformulation of PIs in general.  I was well aware of what happened after the hasty introduction of thalidomide though, and have a begrudging appreciation of the drug approval process, or at least I do now when its not yet denying me my "cure".  Especially in the case of some of the more exotic therapies designed to provide functional cures, its not unforseeable that a decade or so down the line, recipients will be more likely to suffer from cancers or other genetic defects.  In other words, I easily envision an ironic future where hundreds of thousands of us max out every credit line and beg, borrow & steal from those around us for CCR5 deletion, only to die of leukemia a decade later.  One of the hard lessons of HIV is that some mistakes can't be undone.  The modern fetish for vaccines and antibiotics has likely made it harder for us to come to terms with this.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Inchlingblue

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Re: Keeping track of progress
« Reply #12 on: December 06, 2010, 11:16:07 AM »
  In other words, I easily envision an ironic future where hundreds of thousands of us max out every credit line and beg, borrow & steal from those around us for CCR5 deletion, only to die of leukemia a decade later.  

That's so macabre it's actually funny. I think you might have an overactive imagination, all due respect.

 


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