The first week of updates to the Lupus Awareness Virtual Art Gallery were a success if I do say so myself. Not only did I receive a handful of really fabulous submissions but I’ve received some very nice feedback. The free eBook and audiobook I created for the gallery got a really nice boost of traffic thanks to a certain Bad Astronomer being nice enough to send out a tweet regarding it. That same day, the gallery was nominated for a Mashable award in the Most Creative Social Good Campaign category and I received a shout-out in a Mashable article regarding start-up communities. By Thursday, my week was looking more than hunky dory. And then…
I’m neurotic about stats. I knew Thursday was going to be a busy day for the art gallery so I did something I normally don’t do: I monitored the Twitter feed for the search term “lupus.” What I saw that day managed to turn my really elated mood into one filled with rage, anger and disgust in a nanosecond. I saw multiple Twitter accounts tweeting about a natural lupus “cure.” Knowing it would cause my blood to boil but being the type that need to know all information available on any given topic, I clicked the links. Sure enough, I became all shades of livid. I’m not going to give links, but I will give you enough information so that you can find these links on your own and inform yourself on this quackery which is preying on those who are desperate for a cure.
The link led me to one of those used car salesman type, pages upon pages, sales letters. You know the ones I am talking about, with highlighted text and trumped up user testimonials where you have to scroll down for what seems to be an hour to find out cost and purchasing info. It contained thing such as (to paraphrase): “This will make you better. Ignore doctors and research, it is all BigPharma conspiracy!” and “I now consider my cured! I can show you the cure for a fraction of the cost of what you pay your doctor.”
I sent an email venting about this. Yet another piece of woo for me to have to battle. I sent a tweet about it so that I wouldn’t allow the anger, threatening to consume me, to ruin what was an overwhelming (in a good way) day. I had let it go, even so all day long multiple twitter accounts were sending the same garbage link. And then last night, I saw the following status update from one of my fellow Lupus Warriors on Facebook:
LIVID! Offended! Lupus Snake Oil Salesperson pissing me right the F off! I will NOT be adding your snake oil sales pitching freak ass to my friends list. You and lupus can both kiss my mixed breed ass.. and bloody hell, there go some of my peeps ogling over the fuckers tent! WTF?!
My reactions consisted of:
Is it that fucking book! “Find out how I “cured” my Lupus at a fraction of the cost that doctors charge you with their BigPharma conspiracy meds?”
You should have seen me rant on Twitter yesterday when I found a link to it. And I send a really ranty email re: it.
UGH! Unfortunately, there are people desperate enough to buy into that bullshit.
After some discussion, it was discovered that we were talking about two different books! Two different books selling the exact same bullshit but disguised with different packaging. I asked for the name of the Facebook account who is going around trying to friend every one on Facebook with Lupus in their profile, in an attempt to peddle their snake oil. Why?
Maybe we should request to be her friend then bombard her page with FIRE! Give a whole new meaning to Lupus Flare!
Some people made comments that we could be reported and yet they continue to sell their garbage with no reprimand. My reply to the question, “are we going on a bombard her page campaign? If so then I’ll add her I think she’s friend requesting everyone on our group!” and subsequent comment about being reported:
Well, that is what I plan to do. However, we have to be careful so that she doesn’t report us for harassment or something.
I plan on very simply stating, “How dare you prey on those who are desperate, alone and scared! How dare you make a profit off of those who will grasp at any straw because they are terrified! If you had a cure, why are you not giving it for free? Or why are you not donating the money to Lupus orgs so that they can give real help to others! You make me more ill than my Lupus ever could!”
Then I expect to be blocked and removed.
Yes, we could be reported. But as long as we don’t swear or threaten her, then we should be fine.
It really pisses me off that the likes of people like her can get away with the stuff they do.
[…]I’d rather be reported and be heard than remain silent and people buy into her crap.
I was given the name to this profile, Lupus Bible. I sent a friend request. Thankfully, the page was public so I could see the links to the book they are peddling. And that is when I noticed all of the links on the page were through an affiliate program called Clickbank. I decided to go to this website and search “lupus”. And that is when I discovered 3, THREE of these books:
- Yours for only 27 dollars!
- Yours for only 37 dollars but act fast! Only 5 copies left before it isn’t avail for another 120 days
- Yours for only 47 dollars!
Two of these books had pretty much identical sales copy, except one was a “female” selling the book and one was a “male”. But within the first couple phrases on both of them read:
Close the door, turn of your cell phone and put a “Do Not Disturb” sign on the door
And the title of the other is equally telling:
Do Not Read This Page If You Believe Everything Your Doctor Tells You About Your Lupus Condition… Click The Back Button Now, If Your Current Lupus Medication Works For You.
I am beyond livid. It is beyond disgusting that there are people out there preying on and trying to make a profit off of those who are desperate. As one fellow Lupus Warrior stated:
You have a Lupus Cure and you are SELLING it? What is wrong with you? As an alleged Lupus Sufferer you should know what we go through on a daily basis. I suggest if your cure is so good peddle it to the Docs, The Research Centres or the Lupus Charities. Are you for REAL??? Puhlease!!!!
Beware of people trying play into your emotional turmoil and desperation. Science works. Woo doesn’t, except to be emotional terrorist.
Also, they accepted my friend request. I put up my message. Now waiting for it to be removed, reported and blocked.
UPDATE: I do not know if it is because of the fire a few of us Lupus Warriors set to the profile in question or someone complained to Facebook about the offending profile, but it no longer exists! Hopefully, it stays gone. Now if only the 3 books and multiple Twitter accounts would disappear as well.