Dec 172009

Since my address is posted on the blog I get a fair amount of unsolicited email from the MS drug companies. An interesting one came in on Tuesday that I thought bore comment. Serono has setup a new website
How I fight MS
. The premise seems simple enough; five MS’ers telling of their struggle with MS via video, blog entries, and their personal story. There are many things about this site that left me uncomfortable and asking questions.

Other than being the white face of MS they took four existing female MS bloggers and then a “token” male (because there are males with MS too!). Why are the posts so short? These bloggers tend to write decently long pieces about various things. Did Serono mandate the length or did they cut it? Certainly a unifying theme too. Based on the content, that Serono is overseeing, it seems to build hope, confidence, and reassure. The content almost seems whitewashed.

When I saw the a couple of the videos my thought was that these were professionally made. My suspensions were confirmed. My other thought was that they are also getting paid, which was also confirmed by Julie’s statement “My Paid Blogging Gig (And, no, they don’t pay me to pimp their drugs)” and her reply in the comments. I applaud Julie’s optimism. Let’s do a quick marketing 101 course. Serono certainly wants to appear altruistic but they are in the business of selling drugs, and in the case of MS very expensive ones. If they get real MS’ers to speak on their site the MS’ers image and creditability get shared with Serono. That helps them sell expensive drugs. That is also why they are very interested in the content of the messages; probably mostly so the site will attract their target audience. Julie, you are getting paid to pimp their image which really is pimping their drugs.

For a low budget marketing endeavor I think Serono picked an excellent group of people that will help them significantly. Julie was optimistic and rejected Herrad’s comment that she lost integrity, though he later recanted. I agree that you compromise your integrity when you accept money especially from a drug company even if you were naive as to their true intentions. Money had to be the motivator, especially for the ones with blogs. They were already doing everything but video on their blog; if they wanted to do video that is something that could be done on their blog on their terms (and for minimal cost if they needed a webcam). I do wonder how much money they got for doing the bit, money that will cost you your integrity.

After all of that I will conclude by saying I too would be a shill if the right size bag of money came upon my door. Heck I could probably even be a shill for Mannatech, but that would have to be two very large bags of money. 😉

  4 Responses to “Shills?”

  1. Hi Erik,
    I must have missed when you started back to blogging and moved your blog. It’s tough keeping up with the 200+ active MS bloggers out there. I noticed this post because my friend Justine (over at Myelin Repair Foundation) posted this on Facebook through FriendFeed.

    I wish to address the project of “How I Fight MS.” Last June, I was approached by a PR company who had an idea for an “Innovative Online Opportunity to Inspire MS Community.” That was the subject line of the email. Like you, I get alot of junk email from various PR, pharma, group reps. It can be overwhelming and monotonous.

    I responded after repeated emails without know who or how regarding this project. At the beginning there was non-disclosure involved, a phone “interview” and then a test video. I had NEVER used my webcam on my computer or video on my digital camera before that test video of me telling my diagnosis story. It was funny that I didn’t even know how to condense it down into a form which could be sent by email or easily uploaded to Youtube or whatnot.

    I thought for sure they would see me in real life or at least on camera and say – whoa that’s not exactly what we were thinking. But instead Stefan wanted to set up a phone conference to talk more. We talked about all things MS with the question of if there was anything which I had something to say about. That discussion has formed the basis of what he knows about me and my MS. Before moving forward with the project, I did have to get my neurologist to sign that I have RRMS.

    One of the reasons I spend so much time and energy on my personal blog, Brass and Ivory, the Carnival of MS Bloggers, and MS Central and RA Central, is to help myself through this journey and to help others as well. What I am paid for my articles at HealthCentral is really tiny compared to the time and effort I put into maintaining relationships with real people who have MS. It doesn’t even come close to minimum wage, seriously.

    Also, other disease communities are much more high-profile (such as diabetes) and get much more attention and publicity. One of my motivations for saying yes to the “How I Fight MS” project was to bring more attention to the MS blogging community in general. I hoped that folks who found the vlogs would go further and find all of our blogs. In a way, I’m using the platform to promote our community as much as Serono/GreaterThanOne (GTO) is using us to share real life information with a wider online audience (although I don’t really think that I’ve seen this advertised anywhere nor does it come up high in search rankings for MS vlog). To be honest, I was fearful of being on camera.

    The 30-second introductory video for each of us professionally produced, but I can assure you that each vlog I have done has been done on my own digital camera, uploaded to my MacBook, edges cutdown with iMovie, and uploaded to their DropBox account. A similar process is done with the written blogs (which do have a character limit btw). I have been aiming for videos under 3 minutes and thoroughly expected that GTO would edit down the 5+ video of me doing a couple of yoga stances and rambling. (That day I just DIDN’T feel like being on camera.) They posted the whole thing which just the “talk to your doctor before starting an exercise program” disclaimer across the screen.

    So far NOTHING I’ve submitted has been edited in any way. But I’ll be honest, there is plenty of stuff I will post on my personal blog which I would NEVER turn the rights over to HowIFightMS or HealthCentral or anybody else. Because sometimes things are just too personal to be paid to write or share about them. That helps to explain some of the differences seen in what I share and where. But that’s just me; I can’t speak for anybody else.

    I didn’t know who else was involved with this project until September (other than my good friend Jen with whom I had discussed it beforehand). It is disappointing that they didn’t recruit anybody in their 20’s or early 30’s, or of obvious differing ethnic backgrounds. The RRMS requirement certainly eliminated many of the male bloggers I personally know and I am aware that they did some of their MS community research by perusing the Carnival of MS Bloggers list (on which your new address has just been updated).

    Anyways, I’ve rambled on now. It took alot of contemplation on my part to decide whether the benefit (and hopefully farther reach) of participating outweighed the negative pushback I received from a few very close blogger friends, Herrad included. She was beside herself when it first appeared.

    BTW, Herrad is a female with PPMS who lives in Amsterdam. She developed a pressure wound so severe that she was bedbound for 15-16 months waiting for it to heal. Only recently has she been able to start learning how to sit again in a modified wheelchair for up to 4 hours a day now after starting that process in October.

    I like that “How I Fight MS” is an unbranded website and hope that it brings the type of awareness which many of us in the online MS community are complaining about that isn’t promoted by the big orgs, non-profits, or even pharma promotions. These guys have done it right – real people just speaking their mind and trying to help others who are on this journey too. Oh, and btw, I’m proud that my ability to find better locations and lighting in my own home has been improving.

    So anyways, no shill here!! In fact, I happen to be treating my RA more aggressively than my MS although we are hoping that Rituxan helps both. Last summer I had a total of 8-days Solumedrol, yuck. (Oh I do find the poll questions on the website to be rather annoying. I declined to answer many of the questions myself when asked.)
    If there are any questions you may have in regards to this project or others which you would like to see online from folks like NMSS or others, please don’t hesitate to ask or share. I’m all for trying to increase exposure to our MS community and raise awareness in general. I hope you can agree that we REALLY need more of this.

  2. Not sure if you’ve been keeping tabs on MS treatments lately but CCSVI seems to be the hot topic on everyone’s mind. Many people on This is MS have had the treatment done and for the most part are reporting very positive results…

    I guess time will tell if this is a viable option for people who suffer from MS.

  3. Brian,
    Thanks for the comment. I did post on Iron Buildup and MS but I think it is DOA. I am glad people are thinking outside the box; there needs to be a lot more of that.

  4. We have a few members with MS. It would be great to have some good bloggers to join us and provide some support and community.

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