I have no problem believing that there are now people inside NIH who are sincere and want to help us. But studies like this are why I wouldn't support advocating for an RFA in the past if we had no idea how all this new money (great!) would actually be spent. I'm a little too cynical to believe that it would go where some of us want it to go (which is to say that there are probably some people who don't see this as a waste). True, Fred Friedberg is a long ways from Simon Wessely (and Dedra Buchwald, for that matter). But that doesn't mean he's ultimately all that helpful, either. A 'friendly' or 'white hat' guy who does a lot of work with 'coping strategies' and such is still a guy who's taking money that could go elsewhere and devoting it to coping strategies. Or trying to predict how crashes are induced by more discussions with more psychiatry professionals, with or without physical monitoring.
I wasn't quite well enough to finish up the survey or send a note to NIH. But I had mixed feelings about it in the first place. Remember, the CDC still uses their Wichita and Georgia cohorts to produce 'research' that they consider to be part of defining what 'CFS' is. (Like, you know, playing card games) I don't want to come off as overly paranoid, but after this much time...who cares. So let's say I have an idea about research--and I do--and I submit it to NIH. Since we know there are still people hostile to this disease there, what exactly would stop them from speaking to the CDC and potentially guiding them towards using their bogus cohorts to disprove, well, just about anything we think we know about this disease?
Does that sound so impossible? Does it sound so paranoid? The Nath study has something to do with "post-exertional malaise," does it not? Well...what exactly IS "post-exertional malaise?" Because the CDC says they can't define it. Right? Didn't Beth Unger communicate that exact idea at CFSAC not long ago? And who defines what the disease is, if not CDC?
Beyond that...I've also long had a concern about Fukuda being used in studies, which I might as well dump here also. Generally speaking, we, as a patient community, we'd prefer to see CCC/ICC cohorts, right? Okay, great. We don't even want to see Fukuda included, because even if that might not potentially water it down, it still gives it credibility it doesn't deserve. But what about the people at journals? If you're a journal editor, and you're submitted a paper that uses CCC/ICC but doesn't mention Fukuda, you're then going to publish a paper about 'Chronic Fatigue Syndrome' that doesn't even mention the CDC's gold standard? I know it's been done, but pretty rarely, correct? I'm hopeful this is a barrier that's going to slowly come down, as well, but I know there have been studies proposed that aimed to use a stricter cohort exclusively, but the group was told that if Fukuda were not among the criteria, that the paper would be rejected. Because the CDC is the authority, and how would it look if you're publishing a paper that directly contradicts the world's leading medical authority on something that they themselves created.
I trust that the Nath study will have something to say about PEM; but if it does, if it can, it will be describing a sign that is authoritatively said to be something that is as of yet undefinable. I truly hope that isn't a problem, but is it nuts to think that there might be some conflict that could develop there?
I'm not speaking up very often these days, and I'm not marching outside HHS or NIH with handheld signs advocating anarchy, either. But no matter how many studies we have demonstrating the effects of PEM, how much does it matter when the CDC says that they essentially don't even know what it is, and refuse to use 2-day CPET? The IOM report had good info, sure, but how much does it matter, really? Cochrane (>IOM) just published another positive review of GET in CFS, again using the same 5 out of 8 Oxford cohort studies, so what does it matter that the P2P said Oxford should be retired? Cochrane sure isn't listening (and, in spite of massive efforts, PACE still stands). And they carry more weight than pretty much anything we have.
I've long thought that money is less important than attitude and direction. I have zero direct knowledge of what people at NIH think of this disease, outside of whispers (which are little more than rumors), but actions speak. The highest numbers that have been called for would be worse than useless if not directed properly. Friedberg's the head of one of the largest advocacy organizations, so why would they look at funding him as anything but something the patient community would applaud?
I realize this has nothing to do with Vicky Whittemore, who I would like to accept is doing her very best, a lot of thankless work on our behalf. I'm just not sure that even strong allies are yet equipped to deal with the state of play, which so far has not changed much; and it's hard to see how it would have even if the IOM report had been perfect, which it was not.
