You can view the page at http://www.forums.aboutmecfs.org/content.php?205-The-Way-Forward-for-ME-CFS
I cant seem to open it?
Well, if it's this tuesday, it's welcome, to say the least. I read the article, cause that what this thread is really about, and I can't think of anything that would be against this model of coperation in research efforts. Who wouldn't want this for ME/CFS? It still feels as rather utopic though, maybe because 'our' research community is smaller and (therefore?) the ego's and differences seem to be bigger. But why not give it a try? First create the infrastructure, than create the climate that's needed for such a shift in mentality. Who will be leading the way? If Suzanne Vernon can achieve this, it would be a small miracle.
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Great article Cort. Very eloquent and hopeful. I also thought of the CAA when I read the NY Times article. Now if we could only get players like the NIH, FDA and Big Pharma to lend a hand. Maybe we will have some drug trials happening as well. Hopefully XMRV will lead them in our direction.
Lynn
Alex, are you talking about experts in promoting effective translational medicine specifically, or to scientific data-sharing and collaboration? Are the approaches you're talking about being applied in any other research or medical contexts?
As someone who has lived through the days when researchers would go to meetings and refuse to speak, doctors would tell each patient something different behind closed doors, and patients would wait anxiously for the publication of promised papers that NEVER appeared, I could not agree with this article more. The only way to conquer this illness is with openness and communication, leaving the old "heroes and villains" approach behind and checking the egos at the door. I personally do not care who gets bragging rights; I care about conquering this illness before a third generation of my family has to face it.
RE: "Let's not even get into the pathogens." in article: Breakthroughs Happen: A Model For Success in ME/CFS
Why not get into pathogens? Some of us are doing very well on therapies that treat & cure CFE symptoms as well as other chronic disease symptoms that incorporate antibiotics with immune boosting therapies, like the Marshall Protocol.
I agree but I think that what Big Pharma and the NIH are missing in CFS is a biomarker. If that's XMRV then so much the better - and we should know fairly soon. If it's something else, then it's something else. What they need is to find something unique to CFS whether it's a virus, a chemical, a network of receptors going crazy, a brain-gut - blood vessel interaction, a mitochondrial problem, whatever. (Interestingly Dr. Vernon's talk at the OFFER Conference is on biomarker's).
Once they have that the floodgates should open because they will finally have something concrete to work on. This is why standardizing the tests, the definition and the research protocols is so important - until you do that its hard to tell whats real. If you do that they you should be able to get consistent findings.
Hey Rich, once we get our treatment review program and patient data program done we can get more patient data on it and that will help spread the word. Congratulations on that paper by the way.
I just tried clicking on the link in the righthand sidebar, still locked out... then I logged out and the link had disappeared altogether.
But Alex can see it! It's just us, leaves! We're under some sort of curse!