too many off topic postings

[Guest guest]

I too have been a member of this group for some time, but didn't

post until fairly recently. When I did, it was technically 'off

topic' - and I was glad I did post as I had many helpful responses -

but quite where we draw the line as to what is appropriate is open

to debate. The subject I posted on was concerning other equally

alarming body-changes which are attributable either to HIV infection

or to the medications designed to be taken to keep HIV in check.

There was also recently a suggestion that the group be renamed to

take into account the fact that we live with lipodystrophy as well

as many other unpleasant changes or side-effects. If there were

separate groups for every single area affected by HIV the list would

be extensive and confusing. I myself suffer from lipodystrophy, but

also have experienced many other unpleasant quirks caused by HIV or

medications, and have found the comments and advice - on a wide

variety of subjects - on this group to be really helpful and

supportive.

I think the fact that the 'off-topic' postings draw such interest

and replies indicates that these postings are valid and part of the

condition we live with. Of those topics that are not relevant to

me, I simply move on to the next one which might be something I can

relate to, and I suspect that many members do the same.

Personally, I'm real glad that this group exists and I hope that

members will recognise that when a member has a legitimate concern

relating to HIV infection he or she should feel comfortable sharing

it with the group. Where else would we get such great support?

Best wishes

Jim, London, UK

[Guest guest]

Thanks Jim for your kind words of wisdom.

I agree with you and others who have posted thoughts on this. Sometimes groups need to storm a bit to regroup. I found that sometimes we say things that are taken outta context and that we really didn't expect someone else would interpret in the way they did. But we also learn that without the face to face sharing and body language we have to re read our postings sometimes to think about how others may interpret what we have said. This is a busy high tech world we live in and sometimes we have to slow it down a bit and rethink what were saying before posting on these listservers.

This is a great site with lotsa news that is shared. I read and move on. If I relate, I read more in depth. Because this area is so new we don't have all the answers and we need to remain open to what others list members may have experienced or knowledge of or have to share without shaming or stigmatizing them further.

This maybe the only lipodistrophy/atrophy type forum for some where the anonymity also allows them to feel comfortable asking about others Lipo experiences, questions or related concerns in living with HIV so that they know they aren't imaging it or alone or going to feel "stupid" by asking their HIV Providers.

This is such a new area. I mean whose to say what's related and what's not within reason? (Vitamins, salt, body fluid changes, weight gain, changes in fat distribution anywhere on the body, metabolism ect)

I look forward to offering my continued support to my peers.( even though I write infrequently)

Lj ~DC

I too have been a member of this group for some time, but didn't post until fairly recently. When I did, it was technically 'off topic' - and I was glad I did post as I had many helpful responses - but quite where we draw the line as to what is appropriate is open to debate. The subject I posted on was concerning other equally alarming body-changes which are attributable either to HIV infection or to the medications designed to be taken to keep HIV in check. There was also recently a suggestion that the group be renamed to take into account the fact that we live with lipodystrophy as well as many other unpleasant changes or side-effects. If there were separate groups for every single area affected by HIV the list would be extensive and confusing. I myself suffer from lipodystrophy, but also have experienced many other unpleasant quirks caused by HIV or medications, and have found the comments and advice - on a wide variety of subjects - on this group to be really helpful and supportive.I think the fact that the 'off-topic' postings draw such interest and replies indicates that these postings are valid and part of the condition we live with. Of those topics that are not relevant to me, I simply move on to the next one which might be something I can relate to, and I suspect that many members do the same. Personally, I'm real glad that this group exists and I hope that members will recognise that when a member has a legitimate concern relating to HIV infection he or she should feel comfortable sharing it with the group. Where else would we get such great support?Best wishesJim, London, UK

[Guest guest]

I agree. I think the "off topic" posts are helpful. Look, this is new to us. Like other things that are associated with having HIV, we may not know for some time what is related and what is not related. To me, knowledge is power. If I can get that knowledge here, great. I look forward to every email and every subject.Quite often there are posts that don't concern me, so I just delete them, or, I read them to learn more so I can help support others.

too many off topic postings

Thanks Jim for your kind words of wisdom.

I agree with you and others who have posted thoughts on this. Sometimes groups need to storm a bit to regroup. I found that sometimes we say things that are taken outta context and that we really didn't expect someone else would interpret in the way they did. But we also learn that without the face to face sharing and body language we have to re read our postings sometimes to think about how others may interpret what we have said. This is a busy high tech world we live in and sometimes we have to slow it down a bit and rethink what were saying before posting on these listservers.

This is a great site with lotsa news that is shared. I read and move on. If I relate, I read more in depth. Because this area is so new we don't have all the answers and we need to remain open to what others list members may have experienced or knowledge of or have to share without shaming or stigmatizing them further.

This maybe the only lipodistrophy/atrophy type forum for some where the anonymity also allows them to feel comfortable asking about others Lipo experiences, questions or related concerns in living with HIV so that they know they aren't imaging it or alone or going to feel "stupid" by asking their HIV Providers.

This is such a new area. I mean whose to say what's related and what's not within reason? (Vitamins, salt, body fluid changes, weight gain, changes in fat distribution anywhere on the body, metabolism ect)

I look forward to offering my continued support to my peers.( even though I write infrequently)

Lj ~DC

I too have been a member of this group for some time, but didn't post until fairly recently. When I did, it was technically 'off topic' - and I was glad I did post as I had many helpful responses - but quite where we draw the line as to what is appropriate is open to debate. The subject I posted on was concerning other equally alarming body-changes which are attributable either to HIV infection or to the medications designed to be taken to keep HIV in check. There was also recently a suggestion that the group be renamed to take into account the fact that we live with lipodystrophy as well as many other unpleasant changes or side-effects. If there were separate groups for every single area affected by HIV the list would be extensive and confusing. I myself suffer from lipodystrophy, but also have experienced many other unpleasant quirks caused by HIV or medications, and have found the comments and advice - on a wide variety of subjects - on this group to be really helpful and supportive.I think the fact that the 'off-topic' postings draw such interest and replies indicates that these postings are valid and part of the condition we live with. Of those topics that are not relevant to me, I simply move on to the next one which might be something I can relate to, and I suspect that many members do the same. Personally, I'm real glad that this group exists and I hope that members will recognise that when a member has a legitimate concern relating to HIV infection he or she should feel comfortable sharing it with the group. Where else would we get such great support?Best wishesJim, London, UKIf you received this email from someone who forwarded it to you and would like to join this group, send a blank email to lipodystrophy-subscribe and you will get an email with intructions to follow. You can chose to receive single emails or a daily digest (collection of emails). You can post pictures, images, attach files and search by keyword old postings in the group.For those of you who are members already and want to switch from single emails to digest or viceversa, visit www.yahoogroups.com, click on lipodystrophy, then on "edit my membership" and go down to your selection. The list administrator does not process any requests, so this is a do-it-yourself easy process ! :)Thanks for joining. You will learn and share a lot in this group!Forward this email to anyone who may benefit from this information! Thanks!In Health, VergelInterim List Administratory benefit from this information! Thanks!In Health, VergelInterim List Administrator