Agreed. What would be better? What should I have asked of the NIH? I don't know. I mean, I have an idea, but then there's this other aspect of what happens when research that's labeled 'groundbreaking' gets published. You know, the sort of study that is splashed out with great fanfare by a (probably in-house) PR agency at Columbia or Stanford or wherever. Nothing against them, of course. But we get papers from people like Montoya and Lipkin/Hornig that show issues like brain and/or cytokine abnormalities, and it seems like something that should, well, make a difference somehow. Lead to people not being treated like crap by medical science because they don't take the time to understand this disease we're stricken with.
I remember the Schutzer et al study from 5 years ago. That was a big one! Accompanied by these puffed sentences that 'scientists have finally found a physical/organic basis for Chronic Fatigue Syndrome.' Heck, the Cornell paper from last week almost sort of implied that it was their researchers that were the first to find something 'real' in CFS (though that may have been referring to something more specific, which would of course alter the context, so I'm not sure...still, reading 'for the first time' is kind of irritating). And it's not like we never see this--it happens more frequently than it used to, before people like Hanson, Montoya, and Lipkin were publishing in the field.
But now it's years since the spinal fluid proteins study. Coming up on two years since Montoya's brain abnormalities paper. A year and a half since the IOM report, for better or worse, and that was followed not long after by the Lipkin/Hornig paper (cytokine abnormalities in spinal fluid in CFS ended up magically being the subject of a Peter White review on a poster board at a psych conference a year ago). And what has changed? I mean, much like the ICC, the IOM is not a badge we can wave at doctors to try to get them to take us seriously--I can't see that as anything but a counterproductive approach, actually. On Facebook a patient claimed that when she told a doctor in Pennsylvania that CFS was serious, that Ian Lipkin was researching it, she claimed that the doctor laughed at her. A few months ago on "Science-Based Medicine" blog, Lipkin's name was raised, and while that could seen as being a weak move to try to argue from authority, he's not some schmo, and his presence in the field should, one would think, count for something. A moderator responded that he neither knew nor cared who Ian Lipkin was. Wasn't too impressed with anything else people showed him, either, including all of the PACE stuff from Tuller, Coyne, etc.
I used to think that research was what we needed to change minds. It's evidence, and, we were told, evidence was what was required in order to take the disease seriously. Well, although we still get tons of psych CFS research, we've sure had a bunch of high-profile stuff in the past couple of years. Has it changed minds? Well, gee--is it a coincidence that we've now had at least 8 deaths in the past two months alone (not that we can automatically assign cause of death to ME in all of those cases, but come on)? Have many minds changed when we know that patients still have miserable experiences with medical professionals on an ongoing basis?
Unless a true smoking gun was found--which I believe is possible, but not likely--I'm beginning to wonder what research it's going to take to change anyone's mind. The NIH is on our side now? Great. What does that mean? Is it going to matter if even Nath publishes a pretty good paper that few will take seriously? I'm starting to lean towards the idea--in light of FF being the recipient of HOW MUCH MONEY? That minds need to change first, somehow. Then, they'll want research. And then, it'll mean something. The substantial additions to the literature in just the past few years don't seem to impress folks: either we're cherry-picking, or they're pilot studies that haven't been replicated, or there's no control group...all of which are valid points to raise. But you know what? The standard that this disease is held to is beyond ridiculous, and nobody ever talks about it. And it would be unprofessional for the researchers to do so, but just because it isn't spoken of doesn't mean it isn't a very big, very real, elephant in the room. I mean...I'm not big on the anti-'Big Pharma' bandwagon...but you know what? If they had to work in OUR paradigm, they wouldn't get anything approved, ever.
I don't have the answers. But now we're all getting older and the deaths are bunching up, and more will follow. Sorry for venting. Maybe something will even come from this. But right now it looks like a real waste.
