"Dr. x is just against ccsvi; he's paid by pharma to publish fake results; he's trying to make sure MS never gets cured so he keeps his job; his study is flawed cause only zamboni can ever publish results on this; study is useless because it doesn't prove what I believe/want" <-- ALL of these I have actually heard!
And if you were on the path of selecting a career (as I am), would you want to be Dr. X, the unlucky scientist/doc who got results no one wanted?
1eye wrote:Oh, for heaven's sake. If you're afraid, if you can't stand the heat... These studies seem to find their way to publication in no time flat when they are negative, and I think there are many who are very interested in hearing them. If you don't find what think you want to publish, that's simple. Drug companies do it all the time. Don't publish. See? No backlash. No facebook posse. Don't spill any of your martini.
The other weird thing I've been thinking is about blinding. Why all the emphasis on blinding? If this were a drug remedy with a potential to competitively wipe out a whole segment of the drug industry, I could see that. This is a prevalence investigation. The answer should be pretty easy. Is this not the 21st century? I think the burden of proof should be on the medical profession to show that angioplasty does not relieve symptoms.
But that's just me, right?
I think in all of your ramblings (I don't mean that word to be mean) this is the point you are missing. You come across as trying to tell us that we are naive and there is no evidence, wait for the science etc. But if you had MS and there was something that could potentially relieve some of your symptoms, even if it was temporary, I think you would look at it differently.
Cece wrote:"Dr. x is just against ccsvi; he's paid by pharma to publish fake results; he's trying to make sure MS never gets cured so he keeps his job; his study is flawed cause only zamboni can ever publish results on this; study is useless because it doesn't prove what I believe/want" <-- ALL of these I have actually heard!
It's the internet....do the doctors care what patients say in a CCSVI subforum on the internet? Have you ever read the comments after a CNN article? There will be a story about a death and the comments will be about Darwin's awards and random things and then people chiding the people making jokes...there is a freedom to say anything that does not much exist outside of the internet.
Maybe in the doctor's rush to be first and get the rewards you mentioned, he failed to properly design the trial or to do all the 'tweaking' of the procedure necessary before trialing.
The pharmaceutical companies benefit from those unwanted results....
But I think we should all choose our career paths based on our interests and aptitudes and not let the opinions of strangers on the internet influence that choice! Particularly during these 'interesting' times! ("May you live in interesting times....")
I don't think researchers or IRs are used to having quite so many people following everything they do. We are invested.
I also think that, from a clinician's perspective, you cannot expect patients to be rational. Some will be, some won't. Some will be desperate, some will still believe in CCSVI two decades after it's disproven if that were to come to pass, and they'll have cognitive fogginess and mistrust in authority and they might make fun of your uselessness as a distraction from the misery of the disease with its useless treatments....then again even Dr. Freedman got a hug from a former patient (anyone remember that one?!) so it can't all be the ugly stuff.
It's an interesting discussion, willowford.
Perhaps if you really want to help MS patients, you ought to be an interventional radiologist.
Cece wrote:you'll need the phlebotomy thread for blood-letting:
Nonetheless, despite best efforts to properly conduct a study, and to make sure the conclusions are related to the findings that not exaggerated, there's really not much I can think of to avoid getting results that others don't like and will blame you for... even if those findings end up being true.
Cece wrote:It's the internet....do the doctors care what patients say in a CCSVI subforum on the internet? Have you ever read the comments after a CNN article?
Researchers are not alone in having their worlds turned upside down by a combination of the internet and economic change. Society is changing rapidly and the old way of doing things is gone. Researchers will need to adapt like everyone else. No one with a condition like MS has the patience to wait for the medical community to catch up. The reality is that no-one trusts anyone these days and especially not authority figures and experts. The GFC has made people distrusting of individuals and organizations which are the pillars of society. Who trusts banks, politicians and large companies any more? The internet has empowered individuals to communicate, assess and take action themselves. Who would have predicted the internet-led revolutions of North Africa?
Your arguments regarding research protocol etc are OK for a by-gone era, but don't mean much today, to the people who count, namely the patients. And it is only going to get worse for you...... although the one good thing you have done is to join this site! Maybe you could find ways to harness the energy from this site/the internet to formulate new research protocols - vis-a-vis Drs Sclafarni, Cumming etc. I'm sure the imperfections of consumer-oriented research that you are on about, will be sorted out soon. Maybe you could position yourself at the forefront of the new age of doing things?
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