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Thread: Is it time to mothball QA?

  1. #1
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    Default Is it time to mothball QA?

    Members of these forums used to subscribe to a much higher standard of objective and scientific discourse. It was not unusual for members to request citations for claims made. Posts typically included detailed information, not just emotions and fear-based concerns. Members not only expected to have their opinions and statements challenged, but they welcomed and even relished that. Such give-and-take helped us develop thick skin, and that was OK, because those thick skins served us well in challenges from the AIDS orthodoxy.

    Some of us, including myself, felt the forums needed to be more civil (human and compassionate?) and a group of us took a strong enough stand against what we perceived to be bullying that we literally performed a hostile takeover of the forums. I am the sole remaining person from that initial effort, undertaken several years ago, to remain involved in the QA Forums (though John Bleau joined us almost immediately).

    We never intended for the forums to devolved into a mass of self-pity and overly sensitive whining about hurt feelings. We did insist that members would abide by some basic guidelines that insisted on civil discourse and prohibited unproductive personal attacks.

    For more than a year now, I've been considering shelving QA, and making it available as a read-only archive, if that's what the few remaining active members want to do. Just give the word.

  2. #2
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    Default Re: Is it time to mothball QA?

    In terms of the core science I don't believe anything genuinely 'new' has been published - by anyone on either side of the issue - for more than 10 years.
    That makes for tedium having to continually link back to studies that anyone, with a little effort, could find for themselves.
    You have this interesting dynamic where the 'orthodox' view is publicly seen as 'fact' in almost the entire world and its media, yet still a massive percentage of people in the primary small number of 'risk groups' just ignore the subject and stay silent and rarely even talk about it, and a very significantly high percentage of those 'caught' by the testing just ignore it, walk away and don't involve themselves in the conveyor belt. In the USA that number hits around about 70% and in Europe around 45-50%.
    Here in Europe, 'HIV' has become an issue like 'race' and 'gender' - it's something to be 'aware' about, and - when commenting - to 'say the right thing' or you are torn down in flames.
    Often even the most 'radical' people will either look on aghast, or swallow and look the other way, if one questions the basis of the theory or the drugs. Almost like 9/11 or vaccines, except it is easier to be a vaccine or 9/11 doubter than a 'HIV' questioner. Almost every single radical commentator, and every single leading left politician won't debate, let alone question the 'HIV' theory with a very long barge pole. Every single actual 'HIV' dissident group is dead, at least as far as I can tell. We are definitely not seeing the 'dead' activists any more, mainly because there are very few activists left period, dead, dying or alive.
    So maybe that is why this site has become a place to exchange general views about the situation or aspects of it of which some are not to my taste, ie celeb watching, but even more so one for a small number of people facing being tested 'reactive', and not sure what to do, and those who are facing health challenges, and are not entirely sure what to do. For the latter, the truth is that very few 'alternative' health sites do deal with, or want to deal, with anyone who attests to having tested 'reactive' unless they go along with the theory itself. So for those people this site is either the only place, or one of... I don't know another! There used to be a UK based dissident website, mostly based in London, but that's been dead for over two years, it's Yahoo group hasn't had a posting in 4 years, and it hasn't had a meeting in that same time period.

    I've spent the best part of the last five years caring for someone with dementia, essentially full-time for the last three years, and, notwithstanding still having a detailed viewpoint and personal experience of the issue even to the point of near-death, it has allowed me to put into perspective the issue as a whole and not allow it to either rule my life or my health.
    Now that that person, after almost a century of life, has passed to a better place my focus will be on accepting that loss and moving towards support work in that field.

    But I think it would be a great loss to many if this site did get mothballed. Not because the information wouldn't be archived but as a safe place for people to come, no matter that some feel they are challenged.

    Just my two-pennies worth.

    Quote Originally Posted by jonathan barnett View Post
    Members of these forums used to subscribe to a much higher standard of objective and scientific discourse. It was not unusual for members to request citations for claims made. Posts typically included detailed information, not just emotions and fear-based concerns. Members not only expected to have their opinions and statements challenged, but they welcomed and even relished that. Such give-and-take helped us develop thick skin, and that was OK, because those thick skins served us well in challenges from the AIDS orthodoxy.
    Some of us, including myself, felt the forums needed to be more civil (human and compassionate?) and a group of us took a strong enough stand against what we perceived to be bullying that we literally performed a hostile takeover of the forums. I am the sole remaining person from that initial effort, undertaken several years ago, to remain involved in the QA Forums (though John Bleau joined us almost immediately).

    We never intended for the forums to devolved into a mass of self-pity and overly sensitive whining about hurt feelings. We did insist that members would abide by some basic guidelines that insisted on civil discourse and prohibited unproductive personal attacks.

    For more than a year now, I've been considering shelving QA, and making it available as a read-only archive, if that's what the few remaining active members want to do. Just give the word.

  3. #3
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    Default Re: Is it time to mothball QA?

    Jon,

    If you do decide to mothball the site, I could host an alternate site and would request a couple of things:

    1. Leave QA open for one or two months after the decision
    2. Post a link to the alternate site
    3. Make an archive accessible to us (as you say you'll do)

    I agree with Steve that a safe place would be useful and I'm willing to provide it.

    Best,

    John

  4. #4
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    Default Re: Is it time to mothball QA?

    The forums themselves are practically on auto-pilot, but they are due for another round of upgrades and maintenance. We haven't paid for hosting fees in years.

    JeremyB37: Your opinion is worth far more than 2 cents. You are one of, if not the best read and well educated member who still participates here, even if you do come across as a bit off-putting sometimes. I miss Gos, Tony, computergeek, Theatre Guy Z, cbwheel and so many other valuable and articulate contributors who no longer visit us.

    No changes will be made without notice, John Bleau. I'm just trying to get a feel from what's left of the active membership. As you well know, I've pondered such an action more than once the last year or two. Some recent posts complaining about the place being unfriendly, negative and judgemental have just put me off to the point that I had to ask publicly.

    While only a handful of people have been posting, recent active threads have had hundreds and even thousands of views. I'm sure many of those views were "bots", but still.... the statistics indicate these forums continue to get a lot of visitors who never register. The quality of the content is more important than ever, and I, for one, am discouraged about how far that quality has declined.

    JB37 raises some interesting points and I wonder if it's time to revisit the site's purpose? Rather than question the arcana of "HIV" and "AIDS" we can focus more on support and documentation of treatment options, such as low-dose and intermittent ARV use? I know that is a controversial topic in some quarters of AIDS dissidence, but those folks don't participate here any longer anyway.

  5. #5
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    Default Re: Is it time to mothball QA?

    As you can see, after a night's consideration, I approved two posts by Steve despite people complaining that he was offensive. In those posts, Steve argued, correctly in my opinion, that his diligent efforts earlier in a couple of threads went unrecognized and the complainants focused only on hurt feelings. Steve's posts, with occasional valuable input from you also, are about the only worthwhile material being added to the site nowadays. I'm just a caretaker, but this site is now on a side road, bypassed by traffic going elsewhere on the Internet superhighway - guess that makes me a little like Norman Bates...

    It's probably best that the site be mothballed and archived, if only to preserve the high quality of past posts (the Perth Group thread is a prominent example). People's expectations from a spinoff site that I would provide would not be colored by their experience here. Jon, this would give you peace of mind and Steve, I'd like your feedback on this.

  6. #6
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    Default Re: Is it time to mothball QA?

    I agree that some kind of interactive discussion site is still needed, and maybe one that focusses on dealing with immune health issues for people 'diagnosed' as 'HIV+', perhaps with a kind of 'off topic' section that can still involve discussion of the science itself, and with the aid of an archived database of the mountain of papers and studies.
    Maybe having the main section dealing with actual health, separate from the inevitably contentious 'does it, the 'HIV', exist or not' subject. That might result in less conflict and people feeling 'challenged'. Personally, I have been very fortunate. I had years of knowledge and experience of the issue long before it affected my own health, and I already had a group of very supportive friends and family who already knew my views on the 'orthodox' view. I also had decades of experience in dealing with 'authority' as an advocate and activist so that I had the confidence to deal with doctors in a way that met my needs rather than just falling in with their conveyor belt methods.
    Many people just don't have that experience or resources and such a forum could - along with other sources of support - help them achieve that autonomy over their own health.
    There are comparisons with other non-'HIV' areas of health and treatment, and many people are challenging the standard catch-all drug based approaches of medicine. I see people challenging the 'statins' and 'heart' based drug therapies because they know the side effects and are learning there are solid and well-evidenced alternatives.

    I have been pleased, on the issue of 'HIV', with much of the response to recent events in the UK around the proposed general use of 'PrEp'. At a time when access to health care is at the top of the agenda as a result of the banking collapse, recession and 'austerity' many people feel prepared to challenge the monstrous irresponsibility of funding daily Truvada at a cost of GBP 21K - USA$28K per person per year, as opposed to helping people understand how to protect themselves in their daily lifestyle habits.

  7. #7
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    Default Re: Is it time to mothball QA?

    Another option is the one adopted by former administrator: hold all posts for moderation and approving only those that have merit. It would mean a bit more work, but probably only in the short term, as people became familiar with what is considered worthy. Such action would set the moderators up for charges of censorship, but that happens anyway. It would be a way to demonstrate what the core group considers worthy topics for discussion.

    I'm just thinking out loud and offering possible alternatives.

    My personal interest in AIDS dissidence has evolved to issues of minimizing toxicity of drug intervention after patients health and certain immune-related markers has declined to a certain point. None of this has objective markers... yet. It is all subjective. I'm of a mind that not all people who test HIV-positive will need intervention with ARVs, but that a good number of them probably will. That is not to say they require the current guidelines of triple class combinations at recommended doses.

    I continue to consider the evidence for treatment of healthy positive people to be inadequate to risk long term and cumulative effects. As for prescribing PrEP to healthy HIV-negative gay men, the rationale boggles my mind. Completely unacceptable as a public health policy, though possible an option for a very few identifiable couples.

    These issues need to have better criteria developed to assist people in making informed decisions. I think the success JeremyB37 and myself and others have had with reduced dose and intermittent use of ARVs is an important piece of the current puzzle, though I haven't given up that other, better options might be out there.

    Some so-called "alternatives," mostly based in neutraceuticals and concoctions using fresh fruits and vegetables and herbs have not yet passed scientific muster, or even provided sufficient anecdotal evidence of efficacy imho, but that doesn't mean we can't encourage documenting them and see if they are beneficial in a bigger picture.

    Finally, I would like to have a better working relationship with JeremyB37 and other gay men to discuss and develop new talking points, as well as more comprehensive and scientifically based messaging for gay men about personal responsibility and ways to improve our community's sexual health and reduce the risk of acquiring chronic immune dysbiosis. To do that would require an understanding of our own relationship and an acknowledgement that we both have something to bring to the table.

    How do we get some of the bright minds who used to share here to return and contribute? I think that it is critical to hear from them and I've started to put out requests for responses on Facebook and personal invitations to come back and talk to us.

    Finally, John, I don't really mind if QA is a "side road". If we can offer meaningful information and constructive discussion, that is more important to me than large numbers of visitors. Those who are most likely to benefit will find the site and come, if they see serious and thoughtful interaction.

    Quote Originally Posted by John Bleau View Post
    As you can see, after a night's consideration, I approved two posts by Steve despite people complaining that he was offensive. In those posts, Steve argued, correctly in my opinion, that his diligent efforts earlier in a couple of threads went unrecognized and the complainants focused only on hurt feelings. Steve's posts, with occasional valuable input from you also, are about the only worthwhile material being added to the site nowadays. I'm just a caretaker, but this site is now on a side road, bypassed by traffic going elsewhere on the Internet superhighway - guess that makes me a little like Norman Bates...

    It's probably best that the site be mothballed and archived, if only to preserve the high quality of past posts (the Perth Group thread is a prominent example). People's expectations from a spinoff site that I would provide would not be colored by their experience here. Jon, this would give you peace of mind and Steve, I'd like your feedback on this.

  8. #8
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    Default Re: Is it time to mothball QA?

    Jon and Steve, as well as others who may be lurking,

    I believe the forums should follow the evolution in your thoughts, namely focusing more on treatment than on existential questions such as whether HIV exists and/or is the necessary and sufficient cause of AIDS. I think it has gone that way at any rate.

    We used to discourage dispensing treatment advice but have since relaxed on that which, IMO, is a good thing... but do we risk legal consequences from any perception that we are giving treatment advice? What I mean is, if someone, even a non-administrative member, says such and such an approach worked for him, can a reader who tries it and later gets sick blame us?

  9. #9
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    Default Re: Is it time to mothball QA?

    If that were the case, David Crowe's schedule would be full of appointments to respond to depositions and lawsuits from followers of Rethinking AIDS.

    Seriously, there can be no enforcement action against people telling their personal story or experience, or sharing published research and information. Giving medical advice is another matter, but even then there are hundreds of alternative health sites with forums recommending various treatment options. I don't think anyone here has ever crossed that line, but we probably should post a disclaimer and require people to acknowledge it.

    Quote Originally Posted by John Bleau View Post
    Jon and Steve, as well as others who may be lurking,

    I believe the forums should follow the evolution in your thoughts, namely focusing more on treatment than on existential questions such as whether HIV exists and/or is the necessary and sufficient cause of AIDS. I think it has gone that way at any rate.

    We used to discourage dispensing treatment advice but have since relaxed on that which, IMO, is a good thing... but do we risk legal consequences from any perception that we are giving treatment advice? What I mean is, if someone, even a non-administrative member, says such and such an approach worked for him, can a reader who tries it and later gets sick blame us?

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