tag:blogger.com,1999:blog-8550428.post114562445416871111..comments2024-03-27T01:34:23.434-04:00Comments on Pharma Marketing Blog: Restless Pharma MarketingVladhttp://www.blogger.com/profile/04114063498108633047noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-8550428.post-33752937170478118992012-10-18T21:22:40.773-04:002012-10-18T21:22:40.773-04:00RLS is real, but I have no trust at all in the RLs...RLS is real, but I have no trust at all in the RLs Foundation. You can look back in the archives, and it was online by 1998, at least that is when I found it. I have long been suspicious of how this foundation started, and who is actually running the asylum. BUT, they did not make up RLS, as it is real and can be very severe. sleep deprivation is an epidemic. While i am looking for "dirt" on them, I have to defend them a little bit (mind you very little) as far as RLS has NOT been made up. I have had it for 40 yrs and it is very real. Thanks for this info, though. I have been operating support groups since 1997, and not for a fake disease, I can assure you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8550428.post-8240257667205242702007-11-14T18:43:00.000-05:002007-11-14T18:43:00.000-05:00I've already posted a lengthy comment about the CR...I've already posted a lengthy comment about the CR video and the RLS foundation's response at http://www.pharmalot.com/2007/11/restless-leg-foundation-boycotts-consumer-reports/ (as "Really Restless") and I'm not writing to defend either the foundation's absurd attack on CR or the terrible Requip ad blitz. <BR/><BR/>However, the suggestion in your earlier post entitled "Restless Pharma Marketing" that the RLS Foundation was conceived as a marketing tool for Requip is not accurate. Aside from the color scheme issue, your belief seems based largely on the “suspicious” fact that “[a]lthough the RLS Foundation Web site claims the organization was incorporated in 1992, the earliest press release available on the site is dated November 14, 2005, just one day before the press announcement of FDA approval of Requip.”<BR/><BR/>However, I first learned of the foundation through its web site in 2000, when my successful career was almost derailed by severe RLS (yes, it is a real neurological disorder and sometimes disabling.) At that time, the foundation was one of the very few sources of solid information for either patients or medical professionals. It was also encouraging (and sometimes funding) scientific research and helping establish support groups throughout the country. And it began as a true grass roots movement, started by a few individuals with the disorder. Although I don’t know when the organization started, the web site states that it began in 1989 and the site contains archives of its newsletter going back to 1997. http://www.rls.org/NETCOMMUNITY/Page.aspx?&pid=496&srcid=471<BR/><BR/>The earliest Annual Report posted on line is from 2001; its list of “Corporate and Foundation Support” includes, but is not at all dominated by, drug manufacturers, although it does not provide donation amounts. <BR/>http://www.rls.org/NetCommunity/Document.Doc?&id=142 <BR/><BR/>Of course the Foundation’s current receipt of major funding from GSK and Boehringer Ingelheim – and the extent, if any, to which that influence’s the Foundation’s activities – is another issue entirely. My point is simply that the drug companies didn’t event the disorder or the RLS Foundation, although they certainly have been trying to convince too many people that they might have it.Anonymousnoreply@blogger.com