POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: bobino on April 07, 2007, 06:17:42 pm
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Logged on today after being gone for a couple of days, and now the lipodystrophy forum is gone. What happened?
Sorry, but I didn't know where else to post this.
John
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It's been merged to Treatment & Side Effects.
Milker.
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but why ????
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Hi Panda,
this is explained here: http://forums.poz.com/index.php?topic=11017.0
Hope this helps :)
Milker.
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They need to make announcements like that "stickies" at the top of the forum. They're too easy to miss and sink quickly, as I never saw that particular thread and I'm sure 80% of the other posters did not either.
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I think it's a shame the Lipodystrophy forum got merged. Treatment & Side Effects yes, but not Lipo.... Okay, it don;t affect everyone, but it's important, and metabolic syndrome, of which one kind of lipo is an intimate part, is gonna be something many/most people on treatment longtime have to deal with. Fat loss is kinda special and deserves its own place. Now people will have to hunt down under all the Sustiva madness posts (not that these ain;t important). If Someone I Care About... a quiet and slow-paced board, deserves its own place then Lipodystrophy and Metabolic Syndrome does too. A longtermer issue is lipo. An isolating issue is lipo. Guess a lot of infrequent visitors will come back and find useful stuff gone/buried/far away.
- matt
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I totally agree with what Matt (Newt) says.
And lipo sometimes happens before you even had the chance to become a long termer...
Pat
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As for hunting lipo posts down in the newly merged forum, the search function is quite good. You can even search in the newly created forum only by clicking on the "Choose a board to search in, or search all" link at the bottom of the search page. Uncheck the check all box and check the box next to "Questions About Treatment & Side Effects".
If you enter lipo* under "search for" and do not check either of the options ("Show results as messages" and "Search in topic subjects only") you will get every single lipo thread created since the new forums began - all four pages.
Hope that helps!
And by the way, I stickied the announcement thread and I'll C&P this post in the announcement thread as well.
Ann
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I agree with what Newt said too. Lipo is too huge an issue not to have its own section. Sure Ann, you can use the search function, but having to do that I'm quite sure will cut down on the discussion of this topic don't you think? What exactly was the rational for doing this? The only one given was that it "makes things easier" but I'm wondering if that is the case with this topic. As it is lipo gets woefully shortchanged in the medical community as worthy of numerous studies and treatment resolution. It also seems about the #1 concern of any newly diagnosed individual of what to learn about and hopefully avoid, and it seems with most doctors you need to be armed with the knowledge of how lipo works, or how we think it does thus far, to force them to keep it as a prime consideration when switching around HAART treatments.
I'm uneasy about this.
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feels a bit like a "cover up- conspiracy type of thing" with further implications down the line, its like this site is run by the government and it doesnt want to let you know about hardcore sideeffects like lipo and then they will say oh all u get is a mild headache lol so we'l divert all the hospital funds to our paypackets instead and you can keep taking your permanent-diarahhea-and-goblin-look-inducing-tablets because no one cares :(
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feels a bit like a "cover up- conspiracy type of thing" with further implications down the line, its like this site is run by the government and it doesnt want to let you know about hardcore sideeffects like lipo and then they will say oh all u get is a mild headache lol so we'l divert all the hospital funds to our paypackets instead and you can keep taking your permanent-diarahhea-and-goblin-look-inducing-tablets because no one cares :(
Maybe I am being dense here, but are you serious or joking here hussy? I doubt very seriously there is any kind of cover up going on with regard to this site and lipo. I thought the consolidation was a pretty efficient move, personally. I don't recall the lipo forum getting a super amount of traffic on its own, it is a side effect of treatment and about half of all the lipo-related threads I remember reading were posted in the Living With forum from the start- precisely because Living With got the better traffic & not as many would see it elsewhere. I think consolidating the forums will improve traffic there and likely get lipo threads more visibility, not less. I don't currently have major lipo issues, but I am looking over the left hand of this page. I think if I was new here and looking for lipo threads, I would know to immediately go to the Treatment and Side Effects forum...and I think I would be able to search and find what I needed pretty fast. Just my two cents.
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I completely agree with newt and philly267. Lipo is too important not to have its own forum. I find the merger especially disturbing, because lipo is being treated as if it were a treatment side effect. Well, for folks like me, that simply isn't so. I'm not on any treatment, and I have lipo. So as far as I'm concerned, I'm now reduced to searching what, for me, is currently an irrelevant forum (since I'm not on ART and thus have no medication side-effects).
My response may be tinged with a bit of emotion, since my experience has been that everyone seems to treat lipo as some sort of simple inconvenience that HIV+ people should just deal with. And of course, NO ONE even thinks of people who have lipo but aren't on meds. Well, all I can say is, we do exist, and it's really not encouraging to see a site that's supposed to be devoted to *all* people with HIV taking this kind of action.
I guess I can come back once I'm on meds and my problems "fit in" better with what the administrators seem to think the forum should be about.
John
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I completely agree with newt and philly267. Lipo is too important not to have its own forum. I find the merger especially disturbing, because lipo is being treated as if it were a treatment side effect. Well, for folks like me, that simply isn't so. I'm not on any treatment, and I have lipo. So as far as I'm concerned, I'm now reduced to searching what, for me, is currently an irrelevant forum (since I'm not on ART and thus have no medication side-effects).
My response may be tinged with a bit of emotion, since my experience has been that everyone seems to treat lipo as some sort of simple inconvenience that HIV+ people should just deal with. And of course, NO ONE even thinks of people who have lipo but aren't on meds. Well, all I can say is, we do exist, and it's really not encouraging to see a site that's supposed to be devoted to *all* people with HIV taking this kind of action.
I guess I can come back once I'm on meds and my problems "fit in" better with what the administrators seem to think the forum should be about.
John
The forum is called "Treatment & Side Effects". Lipo is a side effect, be it a side effect of meds or simply a side effect of HIV infection.
Also, I don't see how anyone is "reduced" by having to search one forum versus another within the same site to get the information he or she desires. I can understand your emotion due to past experiences from other people, but I don't think that attitude toward lipo is true here. If only speaking for myself, I can say that isn't the case. I don't think of lipo as a "simple inconvenience" whether it stems from the meds or HIV itself. It's a serious subject worthy of discussion either way.
Additionally, you seem to bemoan being dismissed because your particular circumstances don't match those of others here- yet when you talk about being "reduced" to searching an "currently irrelevent forum", that seems to be the same thing you're doing here. I'll venture to say that it is unlikely that this or any other site will ever be fully able to be *all* things to *all* people. It can aspire to that goal, but such absolute perfection is impossible to attain in an imperfect world despite the best of intentions.
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I just don't get it , the managment of this foru, surely didn't do home work here , I think this is the most activate forum here so howcan u take such a decision ????? This is not right !!!! U should bring it back immediately.
This is not just another side effect among other ... thi is THE side effect and should get its own section !!!!
B R I N G IT B.A.C.K !!!!
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As for hunting lipo posts down in the newly merged forum, the search function is quite good. You can even search in the newly created forum only by clicking on the "Choose a board to search in, or search all" link at the bottom of the search page. Uncheck the check all box and check the box next to "Questions About Treatment & Side Effects".
If you enter lipo* under "search for" and do not check either of the options ("Show results as messages" and "Search in topic subjects only") you will get every single lipo thread created since the new forums began - all four pages.
Ann,
with all due respect, I tried this and yes, it works.
But.
In terms of user friendliness this is like taking three or four steps back from where we were. Kinda going back from windows xt to dos if you see what I mean (or OSX 10.4 to system 6 if you are on a mac). From a design and ergonomic, i.e. ease-of-use point of view it is terrible. What used to take a click or two now takes a dozen. On top of this what you get is a search engine's results with the keyword highlighted for every occurrence in every post. Most annoying.
I wish Matt (Newt) chimes in as he is the resident expert on web design.
That's for the technical part of it.
I doubt that the lipo forum was the one with the most traffic, but this is also not the case for research, aids activism or the dreaded CSI thing.
I am not all against re formating and merging but think it ought to be done with much consideration. I believe that the AIDS activism could benefit from being within the Living with forum as it would gain more exposure. I think the topic of lipodystrophy loses out in being merged in the treatment and side effects because it stands out less.
Of course there are many other side effects to being hiv positive but I think it is clear that this is one that a lot of people are worried about or already concerned with. Not least because you can be relatively healthy and yet so obviously sick in the eyes of others because it shows. Nobody can tell your CD4's by looking at you but when you've lost 80% of your body fat there is no point in pretending that all is well.
Because of this I think lipo and its victims deserve to have this forum back.
Pat
PS: by the way, the spell checker still does not recognize the term "lipo" ( but it does recognize "dildo" ;D)
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This new reorganisation is a night mare , I enter the forum and and its really frustrating !!! I just don't understand what was your interest of doing this , this is not fair !!!
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Bump
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I love drug company financed trials and studies that prove lipodystrophy is not caused by the drugs. Of course it is.
I love when my Dr. told maybe I wasnt exercising enough. Pretty hard to exercise when you are crapping in your slacks 24/7. I loved when my new Dr. told me it couldnt be the drugs and put me on zerit after I had spent 10 grand on liopsucition. Fucking heh. Who do you sue? Everyone is covering for the drug companies on this one.How do you gain 65 pounds of fat around your neck and upper torso and crap like a goose all day long?
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None of my doctors have denied that lipo is caused, at least in part or mostly, from HIV medications. However I'd like anyone to suggest what alternative there was in the 90's for these drugs. Am I happy with my lipo -- no? Do I believe there should be some sort of class action lawsuit to force drug companies or insurance to pay for permanent reconstructive surgery for all of those affected. Yes.
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there was an alternative. Stop taking the drugs. I stopped for three years, my ts were 300 and vl was 30000. They remained close to that for three years. I lost 65 pounds and felt great. That was the only alternative.
I have no idea if I would be alive today if I hadnt of joined a Crix trial when it first became available. I have often said I would rather look the way I do now and be alive versus being dead, but when the changes were occurring I wasnt so sure. Lipo destroyed my business and my golf game. I was a freak. Had two tennis ball sized gobs of fat on back of my neck, plus a huge hump. And who can forget the great Serostim scam?
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Like you need to tell me about it. You should see my before and after pictures from '99 and '00 as it happened that quickly, as I'm sure it did with you. I was also very well known in the Fabulousity Circles of Greater Myopia also known as the gay world of Manhattan. So I dealt with it all very publicly and for the longest time was in denial that anyone was noticing, and once I couldn't deny it any longer I stopped leaving my house. I went from being about the hugest social extrovert known to mankind, to being a near total recluse. That said, I still have the same personality, and have adjusted to it all somewhat, but in part it's much of the reason I left NYC and moved elsewhere. If anyone wants to call that a huge cop out and I have a big heaping dose of STFU up for you.
As far as halting HAART for myself, I did not entertain that luxury at the time as surely I would have died... well, maybe not but I was not willing to take that chance. At the time I was convinced I was going to die by the year 2000 anyway so it made little difference.
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Hey
I agree with Matt (newt). As a newbie, not experiencing lipo, the predominant function of that forum for me was to scare the crap out of myself. However...
I think lipo is an incredibly important, stigmatising side-effect that deserves it's own forum. It has a massive emotional impact that these forums exist to serve. I feel like a bunch of people who are suffering from this, and who need to stick together and offer each other emotional support, have been cut off from one another by this move. In a forum like this, how can that not be a mistake?
I know that lipo is becoming less common. I know that there are a variety of options out there that are available to correct it. But I think that as long as a generation of HIVers who have been through the hell of zerit and AZT are around, they need to be supported. This move seems to head in the opposite direction to the idea for a forum for LTSs, which has won wide acceptance.
Lipo is far from dead. Anybody who followed CROI will have seen the disturbing study linking sustiva to lipo when compared with kaletra, regardless of NRTI background regimen.
Matt.
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See this thread (http://forums.poz.com/index.php?topic=11210.0), and chime in there.
Peter