New MS website
Posted: Mon Feb 06, 2006 2:21 pm
Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge.
https://www.thisisms.com/forum/
Too bad the people on this site didn't make one more request....that of having a responsible, honest pharmaceutical company who would place patient health ahead of quick profits and handle Tysabri properly. That would pretty much eliminate BIIB/Elan from the picture!!
I was impressed by the site. I hope that it is "introduced as evidence" at the upcoming FDA Advisory Committee because it represents the opinion of many other PWMS.HarryZ wrote:Too bad the people on this site didn't make one more request....that of having a responsible, honest pharmaceutical company who would place patient health ahead of quick profits and handle Tysabri properly. That would pretty much eliminate BIIB/Elan from the picture!!
I'm sure that the FDA would look at comments from these people as "opinion" as opposed to the scientific evidence that they are seeking regarding Tysabri's safety issues.I was impressed by the site. I hope that it is "introduced as evidence" at the upcoming FDA Advisory Committee because it represents the opinion of many other PWMS.
Trying to keep up with visiting 6 different MS forums takes up enough of my time, thank you There are enough medical professionals out there that have voiced their concern about Tysabri...they certainly don't need me!Harry, I suggest that you create your own consumer watchdog website that represents the opinions of the Tysabri opponents who are sceptical of the motives of Biogen. You could be the voice of the minority of the PWMS who oppose the re-introduction of the drug.
I like you a lot but found this to be very sad. I visit MS websites because I have MS and I hope to one day catch the news that there has been a major breakthrough. As someone without MS you could be doing something much more interesting - like fishing or bowls.Trying to keep up with visiting 6 different MS forums takes up enough of my time, thank you
Wait a minute here....I'm not complaining that I spend too much time trying to find as much info about MS as I can. My note was in reference to a suggestion that I start up an anti-Tysabri website and moderate it. That would be the last thing that I would want to do because of the huge amount of extra time that would be required to even attempt something like that. Please Ian, ask for a clarification on something that I have written as opposed to taking the wrong meaning from it. I think you know me well enough to do that...OK.I like you a lot but found this to be very sad. I visit MS websites because I have MS and I hope to one day catch the news that there has been a major breakthrough. As someone without MS you could be doing something much more interesting - like fishing or bowls.
I suppose I could turn that comment around and say we need a break from the Biogen/Elan sales/marketing people who have lead MS patients down a garden path without first checking what's on that path! It's too bad that they didn't "wait until more data was available" before going full steam ahead with this drug. They have provided a lot of anguish and anxiety to MS patients that really wasn't necessary.I think you need an anti-Biogen / anti-Tysabri break. Wait until it is reapproved, wait until more data is available on a larger number of patients. And then come back and tell us that you told us so.
But you can take a break Harry, by not going on MS websites or reading the marketing material. This is self-inflicted.we need a break from the Biogen/Elan sales/marketing people
I've been following MS research since I was 14 because I had an uncle who had the disease. I married Marg who had MS at the time and have been in this relationship for 30 years. I have seen, first hand, the kind of suffering this disease can bring to others and that is why I have spent and will continue to spend so much time on various MS websites. I will be the first to agree that my perspective can't be the same as the person who has MS but I have been able to help many people despite this.I wasn't suggesting you were complaining. I was just expressing an opinion that there must be better things to do for someone without MS than to go on so many MS websites (or even any MS website).
But why would I want to do this? I enjoy visiting these sites because one can learn a lot about the disease as well as the views and opinions of those who suffer from it. I also offer a different point of view in many cases and many people have told me that they appreciate this. Of course, others don't agree with what I have to say at times. But isn't that what these forums are about....to share and exchange points of view?But you can take a break Harry, by not going on MS websites or reading the marketing material. This is self-inflicted.