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Author Topic: When you're new to reading about hiv/aids research...  (Read 2311 times)

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Offline Ann

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When you're new to reading about hiv/aids research...
« on: March 14, 2013, 08:47:17 AM »
The following exchange in the Zinc Finger thread (the bits between the ***s) started me off on a discussion about how to attempt to get news on hiv/aids from reliable sources. I realised I was derailing the thread and so decided to start a new thread using what I'd written. Here goes!

***

Any comments on the below link

http://seekingalpha.com/article/1269121-sangamo-bioscience-the-impending-failure-in-hiv


He makes several glaring errors / assertions regarding dropping vl loads during treatment interruptions.  That alone marks him as an ill informed hack and not worth listening to. 


Unfortunately, what FreeWilly just said there can be broadly applied to most/many hacks... er.... "journalists" ~coughcough~ who write news articles and/or press releases on anything to do with hiv/aids, both in the lamemainstream press and for online news outlets.

***

I'd like this thread to be something that can help new folks navigate their way around all the tons of hiv/aids information on the internet, and land on good solid scientific dry land rather than ending up getting mired in swamps of bad science, deliberate misinformation, or just out-dated information that some sites don't ever bother to remove from their pages.

It can take time, patience - and in the case of people new to looking into scientific studies surrounding hiv/aids - a lot of trial and error to find articles that have been written by someone who has a working hiv-brain-cell or fifty and is adept at translating that knowledge into the written word in such a way that makes sense to ordinary people in society.

To find articles that you don't have to have a biomedical degree to make heads or tails of, look for articles written by Tim Horn or Gus Cairns, to name two off the top of my head. It there's anything new in the hiv/aids field that is worth taking the time to learn about, you can usually bet that one or both of them have written an article about it.

If anyone can think of other men or women who can shake-down studies published in scientific journals and present them as easily understood news articles, please, please feel free to chime in with their names.

If you do happen to have a biomedical degree or are otherwise university educated in the bio and/or chemical sciences (and know how to read/interpret the jargon in scientific study papers), make sure you're reading studies or abstracts that have been published in peer-review journals. If you have access to a university library, or a medical library, chances are good these days that you'll be able to access journals online for free for which you might otherwise have to pay subscriptions.

And one thing I cannot stress enough - (in fact I'm going to shout...) - MAKE SURE YOU ARE READING SOMETHING THAT HAS BEEN PUBLISHED IN THE PAST FEW YEARS!

Reading currently-irrelevant and often just-plain-wrong "information" that was published in the 1980s and 90s is an easy mistake to make, particularly when you're new to looking at this stuff. There is an awful (and I mean awful in every sense of the word), awful lot of out-dated information about hiv/aids out there on the internet. (The CDC is often a prime example of leaving outdated and wrong hiv/aids "information" up and available for viewing on their website.)

Hiv is one of the fastest growing, in terms of knowledge, fields of medical science and folks should keep that in mind and concentrate on newer articles and studies while ignoring articles written more than five or six years ago.

Once you have a good grounding in current hiv knowledge, then (and really, only then) should one go back and look at older stuff from the first two decades of hiv, just to see how much we've learned and how far we've come since then.



Other than that, I would suggest, no, implore people who are new to all this to definitely delve into one particular, very important aspect of the history of hiv/aids: THE SOCIAL HISTORY. (yeah, sorry, I shouted again.)

Knowing our history will go a long way to helping you understand how far we've come and how far we still have to go regarding things like stigma, and things like the criminalisation of hiv that not only is borne of the stigma, but also perpetuates the stigma.

Knowing the social history of this pandemic will sadden you, but it will also inspire you. For many people, it has the potential of helping you become a better, more compassionate person. It has the potential to turn you from someone who just immerses him/herself in the science into someone who will be willing to fight for the ability for all to access meds, and someday the ability for all to access the (as of yet illusive) cure.

And never forget - "Those who cannot remember the past are condemned to repeat it" (George Santayana, 1863-1952)

We seem to be in grave danger right now, today, of repeating the past history of this pandemic when we do not protest in the streets over things like ADAP waiting lists (in the US) and the removal of the "ring-fencing" that once surrounded funds earmarked in the UK for hiv education, prevention and treatment. Although the ring-fencing was removed quite a few years ago now (nearly ten if memory serves), many hiv clinics in various NHS Trusts are really feeling the pinch during these past few years of economic mayhem.

The ability for many of us to have access to the life-saving meds is not something that was automatically handed over, it was hard-fought for. Too many of us are in danger of losing what our forebearers fought and died for.



Anyway, I hope others can chime in with tips and suggestions concerning learning how to glean the best and the brightest and most importantly, the most accurate and easy to understand information available. I also hope that some may provide links to reliable websites that one doesn't have to pay a subscription before reading the articles.

Thanks in advance to anyone who adds to this thread.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline mitch777

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Re: When you're new to reading about hiv/aids research...
« Reply #1 on: March 14, 2013, 08:58:21 AM »
*APPLAUSE*
*Standing ovation*! :)

I don't spend much of my time in the research forum mainly for the reasons you described.
I have no intention or desire to spend my remaining time on the planet trying to become a scientist but it IS nice to be able to understand advances being made.
Thank you also for pointing out the importance of our history and the need to ACT UP!
I often thought a petition on this site might be helpful on specific issues.

Thanks Ann!
« Last Edit: March 14, 2013, 09:07:09 AM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Online Jeff G

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Re: When you're new to reading about hiv/aids research...
« Reply #2 on: March 14, 2013, 09:37:40 AM »
This is worthy of being a sticky topic ... so it shall be done !

Offline wolfter

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Re: When you're new to reading about hiv/aids research...
« Reply #3 on: March 14, 2013, 09:46:25 AM »
Most Excellent!!!  Maybe it's a dinosaur thing, but I don't spend too much time researching these years.  I figure if there's truly an advance in the treatment, it'll make global news and I can wait a day or two to find out about.

thanks Ann

Wolfie
productivity breeds content

 


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