The Worried Well

[pauldecle]

Dear HIV Partners Community Members,

You may have noticed that there have been a number of postings recently from people who are worried about getting HIV after they have taken part in very low risk sexual behaviour, they then do not accept the results of numerous negative HIV tests and keep posting to our community.

When I helped set up this community it was to support people who are living with HIV not the worried well.

Although I tend to take a very hands off approach in how this community develops preferring instead to see it grow organically I do have very strong views about these postings from people who are not living with HIV.

I have been and will continue to remove these postings from the worried well as I feel they are a distraction from the main aims of this community which is to help support each other in living well with HIV.

I know a few of our community have responded to the afore mentioned posts and I give a huge hats off to them for their efforts. I am open to hearing other peoples point of view on my decision to remove these postings and restricting the person who made the post.

I have taken quite some time before posting this message so I have not come to this conclusion lightly but I do feel that my decision is in the best interest of this community as a whole.

If you would prefer to contact me privately on this (or any other topic) please feel free to email me directly using [e-mail]

With the kindest regards,

Paul

[Positive52]

Really? And what if there is a possibility that what these people are questioning about being told they are positive but then tested are negative, turns out to be true.

What a disservice you are putting out there to suggest these people don’t know what they are saying!!!!

I have talked to my doctor about the concerns in Milwaukee, WI because this is one city that is having a major outbreak again with hiv/syphilis and they don’t know why it’s happening and yes I am from WI.

He did confirm that it could be something they don’t know yet and the tests might be too old or may not be detecting how hiv has changed in the years since it first appeared.

For you to make yourself GOD and suggest that these people are making it up is totally irresponsible on your part!

You know back in the early 80’s, a lot of people put their heads in the sand and said that nothing was wrong and look how many people died because of that way of thinking.

I think you better take it serious this time that they might be something up and not act as if nothing is going on, before it’s too late, like before!!!!

[pauldecle Partner ForumLink in reply to Positive52]

Dear Positive 52,

Might I suggest you re read the posting. In the post I am not discussing the issue of false positive test results I am discussing the worried well, these are two distinct and different issues. In light of your comments I have added another posting to clarify my position ("False Positive is not the same as worried well)". I hope this goes some way to alleviating your concern.

With Kind Regards,

Paul

[Positive52 in reply to pauldecle]

Where would I find this? I don’t seem to see it.

[Griffon in reply to Positive52]

To be fair to Paul he has not suggested that anyone has ' made up ' their symptoms or concerns .

As someone who has tried to reassure the posters that have come here worried that their negative test results are wrong , after they have engaged in very low risk sexual activity , it has become clear that nothing one can say will allay their fears because they actually want to believe the test results are wrong . This suggests that there may be a psychological problem .

As for the problem in Milwaukee , has there been any indication that the present tests are unreliable ?

[Positive52]

So, I see you deleted my post again. Seems you better ask the medical community about the false positive and get your facts straight or your doing a big disservice to this community you seem to not care that much about!

[pauldecle Partner ForumLink in reply to Positive52]

I have not deleted you post if fact I have been composing a response to your last post...

To answer your question directly, I am a 57 year old gay white man living in london, England and yes I remember all too well the days of losing many, many friends, companions and roll models to the ravages of AIDS. I have also been living with HIV for over 20 years so had to navigate the pathway from having a terminal diagnoses to living with a chronic condition.

There are many factors that could explain a rise in the number of newly diagnosed in your country not least the massive cuts in funding for HIV that Mr Trump seems to be hell bent on introducing. Here in the UK we have for the first time in 2015 seen a dramatic drop in the numbers of newly diagnosed cases at least in the major conurbation's within the gay and bisexual communities. It has also to be noted that we have much higher rates of people getting tested, engaged with treatment services, on medication and with fully suppressed viral replication, this along with the availability of PrEP at very low or no cost to prevent HIV infection could also contribute to this drop in infection rates.

While I recognise the very small number of false test results, it is important to keep in mind these are very small numbers (1.5% for false positives and less than 1.2% for false negatives).

The benefits of regular testing, diagnoses and treatment cannot be understated both to the individual and to the larger community. The START study showed that HIV treatment has important benefits for ones health, even if your CD4 count is still high. This international study was one of the most important HIV studies from the last ten years. WHO guidelines now call for ‘test and treat’ strategies – initiating all people diagnosed with HIV on ART as soon as possible after diagnosis – as a way to decrease community viral load and reduce the rate of new HIV infections. These two exciting developments rely on individuals knowing their HIV status.

I, personally have reservations about calling in to doubt the effectiveness of HIV tests.

I would also like to reiterate that while the HIV Partners Community welcomes members from across the globe it has, since inception, been and remains a UK based and focused HIV community group dedicated to supporting those living with HIV. Health care systems and provision differ across nations and this community has to recognise these differences but we are committed to maintaining this UK/European focus. The healthcare systems and access to treatments are closer aligned within Europe than they are with the situation in North America.

[Positive52]

Interesting you put it that way with the difference with the two counties. Seems to me the USA has been the leaders in the giving the needed money to all the other countries to curb the spread of hiv/AIDS.

Until Trump got into office, the USA has been the ones making sure the rest of the world got the funding so this awful epidemic doesn’t start over.

Now because I bring up that false positive might not what it was first thought, you seem to be the expert on what is going on in the USA.

Yes there is major concern that the tests are not at this time, 100% accurate with the false positive actually being positive all this time.

It can be due to a lot of different reasons, but one they are trying to figure out and unfortunately we have a jackass as our president that is cutting off the funding and eliminating the programs to find out why this is happening.

[Positive52]

Oh I’m curious where the drugs that are keeping us alive are coming from because Trump is trying to get rid of the Ryan White Fund in the USA and as you know this is one major Fund that so many people that has hiv/AIDS depend on to get their drugs each month. What happens when it disappears? What happens if this crazy president gets the drug companies to stop making these drugs? Then what?

[Chrissuffolk]

Hi Paul,

This is a tricky decision isn’t it?

I think narrowing the parameters of the group will lead to less participation which can only be a bad thing.

If we allow an open debate it will encourage participation, cooperation and we can work together to reduce stigma of the condition and help widen all of our knowledge and understanding of many different factors.

Some will have their own agendas but let’s hear them, they might broaden our perspectives and we might be able to lessen any fears.

I say if it’s not abusive of trying to sell or try to get financial benefits then allow it.

I’ve seen us be able to help some individuals enormously reduce their fears about what can be a very scary condition to even consider being diagnosed with.

It’s made me put my own life into perspective and helped me realise how lucky I am to be fit, healthy and for the most part emotionally stable despite being HIV positive.

Let’s share that and help develop a united community and forum.

Kind regards

Chris

[Griffon in reply to Chrissuffolk]

I agree with you Chris !

The posts from people who had convinced themselves they had contracted HIV , when all the tests were clearly telling them they had not , may have been rather repetitive , but may also have been informative for anyone else worried about the same issue .

[Chrissuffolk in reply to Griffon]

That was exactly my point

If we can help just one of them alleviate fear of the condition then we have done a good job.

We all know that fear is one of the biggest threats to our emotional wellbeing and also of course has broader effects on our cultural wellbeing as a society.

I might not agree with everything positive 52 states especially since I am not American but his points are interesting. I have to say that I diasagree with his point about the US funding treatment everywhere, I am pretty sure they don’t put any funds into UK healthcare, we aren’t the 52nd state yet lol!

[Xabi141214]

Maybe you positive people especially should acknowledge all us who have aid like symptoms and teat negative. It may not be hiv and most likely isnt but to dismiss the new chinese hiv like virus like the medical world currently is does not help us sufferers. I would swap my place in a heart beat with any of u hiv pos people on medication