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Not much detail at the moment - trial results presented at ACTRIMS / ECTRIMS conference so will be available in due course.
In the face of competition, it's amazing how the companies can keep churning out data which shows how wonderful their products are. 'There are lies damned lies and statistics' always comes to mind when I see MS trial data. In the UK there was a TV advert for a toilet bleach which had the phrase 'kills 99 per cent of germ dead'. Now that would be an impressive statistic for an MS therapy!
Joined: Jun 20, 2004 Posts: 1040 Location: Tennessee
Posted: Sun Oct 02, 2005 11:41 am Post subject:
Well, I know I shouldn't do it, because I'm going to get tarred and feathered, but that clinical trial study has got to be one of the biggest wastes of money I've ever seen!
Sure...........give a bunch of people who are not diagnosed with MS some medication (and we now know how many people are even being MISDIAGNOSED as having MS with even MORE clinical signs than this study called for with regard to people "maybe" about to get MS, perhaps, by a long stretch.........), and let's see how many go on to get MS? Uh...........and what are we comparing that to? Did we somehow know to begin with how many of these people WOULD have gotten MS in the first place, even without treatment?
I can't begin to tell you the people who have other conditions who are being diagnosed as having MS! Fibro, brainstem strokes, even just plain isolated stress-related neurological events; migraines, some of which can even be non-painful but cause MS mimic symptoms, AND lesions that show up on an MRI, etc. (all of which are extremely difficult to pin down, also) - the list goes on and on - any one of which can and often IS misdiagnosed as MS! It's getting just too darned easy for a physician to diagnose you as having MS. When in doubt, just say they have MS and be done with it, appears to be a neuro's new mantra. OR, if a patient won't believe you when you tell them you can't find anything seriously wrong, then tell them they have MS just to make them happy that they can call it something serious. Lately, I've seen NUMEROUS people who want to INSIST they have MS!! And aren't satisfied until they find a physician who WILL tell them that's what they have (whether they really have it or not.)
There's something wrong with this whole picture.
And you know what, Bromley? I took a good hard long look at the topics that were on the agenda for that Actrims Conference, and to tell you the truth, there was NOTHING new on it that all of us here haven't already talked about and knew about OURSELVES months ago!
They should put some of US as speakers on the agenda. Hey, like I said before, my dream vacation is a trip to Greece!
I totally agree with you about the ACTRIMS / ECTRIMS conference in Greece. This conference brought together the finest brains in MS research in both Europe and the US. Now given all the money spent on research each year you'd think half a day would be spent discussing 'what we have found out in the last year' or 'what we know now which we didn't know last year'.
What we got was an endless list of trial results - mainly of the current drugs with different combinations. The influence that Biogen, Schering, Teva, Serono etc have over these events is quite unbelievable. The researchers always come to the same conclusions that we need to take more of the current drugs, more often, earlier in the disease course, continue when it turns progressive etc etc. The researchers seem to be less and less interested in identifying a cause / causes.
Unless I missed it there was nothing of significance reported on minocycline or statins. No doubt a reflection of the sponsors of the conference and their influence. A real Greek tragedy.
Art from the Boston Cure Project attended the conference and will no doubt give an account on their website. Maybe there was more to this conference than the PR from the drugs companies.
Joined: Jun 20, 2004 Posts: 1040 Location: Tennessee
Posted: Mon Oct 03, 2005 5:23 am Post subject:
Yeah, I thought about Art myself. (Great minds think alike.)
An MS neuro acquaintance of mine wrote and told me he was there, but shoot, even he didn't stay for the whole thing! I asked him to tell me what he learned, but I haven't heard back from him yet. My gut feeling is that I won't hear back from him, which will mean there wasn't a darn thing presented there that is worth reporting.
I hate to sound so negative, but since I've sort of been on the outside of all this, I believe I can see things even a little clearer!
I don't believe I have ever seen a medical condition quite so prominently "ruled" and financed by a pharma industry in my life! I thank God I ended up not having MS myself, but now am even more upset for others who do!!
I'm like you, Bromley. Maybe there was something presented there that we'd be interested in!
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OR, if a patient won't believe you when you tell them you can't find anything seriously wrong, then tell them they have MS just to make them happy that they can call it something serious. Lately, I've seen NUMEROUS people who want to INSIST they have MS!! And aren't satisfied until they find a physician who WILL tell them that's what they have (whether they really have it or not.)