Should we restore the Lipo Forum?

[Peter Staley]

Some of our members have been complaining about our recent merger of the Treatment, Side Effects, and Lipodystrophy Forums into a single forum called "Treatment & Side Effects."  They want the lipo forum back.  See their thread here.

The reason we merged them was simply to reduce category clutter.  When someone first comes to the forums, it's probably a better user experience if they don't have an overwhelming number of choices of where to get started.  With the recent addition of the Women's forum and the LTS forum, we decided to try consolidating some of us less trafficked forums.

This has resulted in a bit of a backlash from those who frequent our previous Lipo forum.  We're open to restoring it, but wanted to get a sense of what others think about this issue.  So chime in here, and vote in the poll above.

Peter

[Matty the Damned]

No.

The consolidation of those forums into one was a good idea.

MtD

[Central79]

Hey - I'm reposting what I posted in the other thread that got started about this:

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.

[sweetasmeli]

From a personal point of view I'm on the fence. But for the sake of those who really want the forum I say yes. If enough people are already missing it and voicing their disappointment so soon after it's merger with the Treatment/Side Effects, then I say what harm is one more forum really going to cause?

Melia

[David_CA]

I can see why the Lipo forum was merged into the T & S E forum.  Fortunately, it's not something I deal with at the moment.  If it's really that important to those that do have to deal with it, and it seems to be, then maybe it should be it's own forum.  I'd rather have that as a forum and merge the Someone I Care About forum into something else if we need to reduce clutter. 

Maybe an alternative would be to change how the forums are organized... perhaps some category / heading with T & S E, Lipo, Nutrition, and Activism could be created (can this be done with this forum software?).  This would make things easier to find by better organization, but leave the forum structure intact.

David

[mjmel]

Vote: No need to restore to it's own forum. My search for lipo information/intervention is what brought me to this site/forum.
My thoughts are that the search button (at top of each page...the one with magnifying glass icon) brings up relevant information within this forum.

edited: spell check

[frenchpat]

Hi,

thank you Peter for submitting this to the larger world.

I stated why I want it back here: http://forums.poz.com/index.php?topic=11063.msg138374#msg138374.

I understand you don't want to end up with a galaxy of forums and suggested a possible solution:

1) bin CSI - Ann told us it would happen

2) Merge AIDS activism with Living with. It will get more exposure. (And for those who don't read it, believe me, there is, at least at the moment, potential for drama there too )

3) Reestablish Lipo as a distinct forum

Since you've added 3 forums recently, the net result of such operation would be +1 forum overall. Not exactly the milky way... and you would keep us lipo sufferers smiling.

Yeah I know, we tend to do that anyway so people don't see our sagging jowls , but this one would definitely be heartfelt.

mes 2 centimes

Pat

  the spell checker still doesn't recognize lipo but it does recognize dildo    and... MacDonald's 


edited to add a smiley... guess which

[J.R.E.]

My thoughts are that the search button (at top of each page...the one with magnifying glass icon) brings up relevant information within this forum.

edited: spell check

I don't know how I ever missed that search button on the top of the page. I never seen that before, or I never noticed it. I was always using the search , in the bottom left column. I must be going out of my head !!


Anyway.... I voted yes on restoring the Lipo forum.


Ray

[thunter34]

I posted No...leave the organization as it is now.

That said, I don't have any severe lipo issues at this time.   I am therefore basing my vote strictly on site-economy.  So weigh that into my vote as well. 

[allanq]

I would like to see the Lipodystrophy forum restored.

I tried using the search button at the top of the page. I entered "lipodystrophy" and found that the results did not include a great number of posts related to lipodystrophy. (Am I doing something wrong?) I don't know the number of topics and posts in the old lipo forum, but I recall it did get a fairly good usage.

Because lipodystrophy is a side effect that is readily apparent to others, it affects our appearance and self-esteem in ways that most other side effects don't.

I notice that the forum for "Someone I Care About Has HIV" currently has 246 posts in 23 topics, which seems fairly low. Perhaps this forum can be folded into the "Living With HIV" forum. (I don't know how long the "Someone I Care About" forum has been around; if it's been here for just a few months, that may account for the low participation.)

Allan

[Miss Philicia]

Because some people will write "lipo" or "lipoatrophy" or "lipodystrophy" it's a bit of a no-brainer to me at least that the search rationalization is crap.

[newt]

If it is to be reinstated I suggest it is renamed "Lipodystrophy & Metabolic Syndrome".

People new to this game who don't understand metabolic syndrome, go find out, you will live a long time and it is more likely than not to be in the picture, hopefully later rather than sooner. But, having seen someone on firstline Sustiva go from nice gym toned and tanned neck to Rocky Horror hump in 6 weeks, it ain't a thing of the past.  Or elevated lipids, diabetes etc etc etc.  Sorry to be depressing and untouchyfeely.  There's the realness of it all.

We hopes lipo is a minority and slow moving aspect of life, but it is, still, a unique, defining aspect of this illness.

I just want to commend PS etc's responsiveness and thoughtful management of these forums.  Generally I think the additions/reorganisations work (even the temp CSI forum, as it happens, I find falls in line with GIPA principles).

Time for a beer, long day.

- matt

PS - I am not here and I didn;t mention copyright 

[antibody]

i do think lipo is a separate side effects within it's self. in my opinion it should have it's own forum. it is a side effect of some treatments but also from HIV. i don't really know if it falls into a treatment question category.

[frenchpat]

Wondering if you could make this topic a stickie?

Pat

[mjmel]

I submitt this for your consideration:

Using the search button (above User login/with magnifying glass icon): Press Button
Search For: type either lipo, lipoatrophy, or lipdystrophy in search box
Next, choose: Match All Words
Options: Show results as messages
Search Order: most relevant first
Leave check box checked for Check All
Click Search Button

Results:
Lipo = 7 pages
Lipodystrophy = 4 pages
Lipoatrophy = 4 pages

The only point I wish to make here is information can be found on a given subject. The advantage of the former Lipodystrophy forum is data was not intergrated with other subject matters.

edit: post modified

[allanq]

The search function has very limited usefulness. It is not a workable alternative to a separate forum for lipodystrophy. As Mike (mjmel) pointed out, the results depend on what particular words you enter. Entering Lipo, Lipodystrophy, and Lipoatrophy all yield different results. There are plenty of other searches that could yield useful information on lipodystrophy. Some examples:

Sculptra
PMMA
ArteFill
Bioalcamid
facial wasting
buffalo hump
liposuction
Clinic Estetica
Tijuana
Dr. Serra

Another drawback of the search function is that it has no way of knowing whether the word in your search is just used in an incidental manner. Therefore, it returns many results that are only marginally connected to the subject.

Allan

[frenchpat]

Or,

someone could post interesting info's but mistype keywords (how many different ways of spelling BioAlcamid have been witnessed already?). Go find them with the search tool then...

Furthermore, I notice that when browsing through topics within a given forum, I do not necessarily select the ones to read based on their title or when they've last been updated. My criteria can be manifold (author, title, etc...). Not exactly random but sometimes free associating.
Some topics will contain posts that will link to another post located further down, on another page or in another forum even; this way of navigating is precisely what we have when lipo is treated as a forum, and it is completely lost if all we have is search tools, however good.
I don't want to search for words or info's, I want to READ about them.

As I stated previously, I am not against reorganizing the forums and think that Peter has a valid point in trying to keep a limited number of them. (Besides, it is his website ).

There are alternatives to explore if an effective, yet user-friendly merging of forums is to occur. I've offered suggestions already and here's one more to consider: why not merge Research with Treatments? Progress in research is leading to new treatments; I don't see this as very far fetched. I wish those pro and against consider this broader approach to the question of having a Lipo forum or not.

Hope this helps,

Pat

[Oceanbeach]

I went into the Lipo Forum a few months ago after seeing my face on the local news channel.  I recognized my voice, my words and my thought process but, did not recognize the face.  My request for treatment was declined at the clinic where I receive my care but I was referred to Dr. Marcus Conant in San Francisco by both the clinic and a member of the Forums.

More recently, I was talking to our ADAP clerk at the clinic who has the same issues.  We were both on Trizivir and Sustiva.  His provider changed his Trizivir to Epzicon and now his face is restoring to his original beauty and no side effects.  My reality of the day is, I got more from the Lipo Forum that I did from CSI NY Forum.  If space is really a problem, I woul;d suggest dropping the TV fiction thread and let the script writers do their work.  Have the best day
Michael

[Robert]

I voted Yes.

Lipo can have devastating effects and should be addressed separately.  It just not in the same category as Sustiva dreams, fatigue, lethargy etc.

robert

[cubbybear]

I voted Yes.

Some of the people who voted no, do not have lipodystrophy, and perhaps if they did, they would be more akin to having all of the lipo information at their fingertips instead of having to wade through posts of every other topic like now they are combined with treatments/side effects etc etc.. The countless posts on nausea, diarrhoea, rashes and what ever else we all tend to deal with. 

We don't all have to deal with lipo, and for those that do, surely it's better for those to have the information they need at their finger tips. 

It has had it's own forum since forever, so why fix what ain't broken.  My vote is to put it back please.

[gerry]

I think it is useful to have the lipodystrophy forum by itself.  The questions, answers, and other info shared in that forum are not that easy to recreate/rehash compared to those being raised in the old treatment and side effects forums.  Thus, it probably needs to be more easily searched for.  It also helps, not only for those asking, but for those directing information, if these threads were available more readily.  Even though the actual postings may not be as active, one needs to look at the general traffic, including views of the threads.

[penguin]

yes, please - is important, relevant to both the physical & mental health of an increasing number of people

kate "those aren't twigs, they're my arms"

edited to add - more inclusive title, to encompass metabolic syndrome, good idea

[Peter Staley]

Okay, the Yeas have it.  I've relaunched the lipo forum.  However, it's a cumbersome process moving the previous lipo-related threads back into the restored forum.  I've only moved obvious ones for now.  I'll start a thread in the Lipo forum and ask folks to post the URLs of threads currently in the Treatments & Side Effects forum that should be moved back to the Lipo forum.

Thanks for everyone's input!

Peter

[Central79]

Many thanks Peter. That's terrific.

[Miss Philicia]

democracy+++

[mjmel]

Swell !!! OK, I secretly wanted to swtich my NO vote. Remember: I can switch sides if I've a mind to.

[frenchpat]

Monsieur Peter Staley,

merci beaucoup!

Pat