This is surely one of those instances when I should bite my tongue, but I'll just say this anyway. I don't appreciate such a broad question. It makes me wonder if they're looking for broad meaningless answers. Of course, I've had good experiences with medication and bad experiences too.
If big Pharma wants to know what people with MS think about something in particular, they should be more targeted about what they want to know. Are they really interested? Or are they just trying to make us feel like we're involved.
This makes it sound like I'm angry at big Pharma. I'm not. I'd feel the same way if the automotive industry sent a survey out with one question: How do you feel about the auto industry? I would feel a bit patronized.
I understand what you are saying. I've posed it as a vague question in hopes to get a wide and varied response. When I speak to them, to convey what I've learned, it will be in specifics. I've reached out in a number of ways, in a number of places. The opinions truly run the gamut and I'm happy to present that reality. I'm just looking for the spectrum.
Thanks for your response... It is a helpful addition.
Best,
Amy
Hi Amy,
Here are a couple of posts which may have comments helpful to you in preparing your presentation.
Question of the Week: What Social Media Programs Would You Like to See Developed for MS Patients
Question of the Week: Support Services
FDA, Social Media, and Pharmaceutical Advertising
Another Question of the Week
There may be other posts/comments, but these are the ones which were easy to find. Hope this helps.
Lisa
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Amy,
I appreciate the question you threw out. I guess if you're like me you're just happy being able to have the choice of what medications to take (and, as I've read here on HC, not to take) for my RRMS. I hated having only the choice of prednisone or nothing back in 1987. I remember reading that (on the cusp of 1989-1990) the 90's was declared "The Decade of the Brain" during which many new discoveries would come to light to help those with MS. Well, that certainly came to be partly true. I was happy the pharmaceutical companies were working hard to accomplish that. Now I wish that the discoveries being made at research universities would be picked up faster at the pharma's instead of being ignored because of lack of, well, funding, interest or other red-tape. That leaves a bitter taste in my mouth. I love National MS Society, but I also admire and respect the mission of The Myelin Repair Foundation (www.myelinrepair.org ) To quote them: "The Myelin Repair Foundation is the world’s largest non-profit research organization exclusively focused on developing the next generation of MS treatments—myelin repair. MRF’s success is driven by a seamless, strategic roadmap that expedites scientific discovery and validates it for commercial therapeutic development." Amazing. Did I answer your question or end up babbling? Either way, it sure felt good!
I really believe that living through the "sans treatment era" has a significant impact on how we respond to Pharma and meds. I understand what is hated about the big business aspects of Pharma and all that we pay as a result. (and not just with money!) But like you, I have great appreciation for the research that has been done, and that we have so many options.
Thanks for your ramble Cathy. I find I get to the best stuff in just that mode. See you around the pixels! (and perhaps a coffee shop too!) ~Amy