JayS, I don't really want to be arguing with you and I suspect we agree on everything substantial (including our aims and our frustration and anger with the funding situation). I think the only real point of disagreement is that I'm saying that I think (but don't know for sure) that Susan Maier may well be as good a rep we can get from the NIH, that she cares, and that if she weren't there and someone else was, that might well be to our detriment. I appreciate the feeling that what we get from CFSAC and from the agencies is as close to nothing as makes no great difference, but I do think it's better than nothing (Hope123 just gave some good examples of small signs of progress). I'll reply to some of your replies to me above, but hoping you see this as a conversation not an argument.
I doubt we have different aims, I hope not. My aims are the betterment of people with ME, CFS, ME/CFS, whatever: more and better research, more and better treatment, recognition, respect, and ultimately an end to these diseases and for all of us to get well again. I doubt we differ in what we want, but if you think we do differ based on what I've just described, that might be worthwhile to explore.
I understand the sentiment, but I think 'taking your chances' on a question like that isn't a responsible approach. Hope123 has described how CFSAC has led to positive changes, so I think there's good evidence that CFSAC can make a difference. Yes, it's a small difference, it's not as much as we want, nowhere near as much. But I just think the reality in the kind of situation we're in is that change is not going to come as a sudden big leap forward (except from a sudden medical breakthrough); change in these situations is small, incremental, and requires years of work by many people. I do think progress has been made and is being made. It's terribly slow, I know, but that's just reality; a journey of a thousand miles starts with a single step, and all that. If anyone knows a good short-cut, I'm all ears...
The way that CFSAC works is the same as all the other 200-odd health committees: they are advisory only. I don't see it as a placebo but it's not a powerful democratic institution either. Looking in from the UK, though, we can only dream of what you have in CFSAC, so maybe that's why I feel more positive about it. Just as it is with our democracies: they're not much of a democracy really, but those without democracy would say we should be grateful for what we have even if it's far from perfect.
I think you're basically saying that the whole thing (CFSAC) makes no difference, achieves nothing, and so no kind of change to it would matter. I understand your disillusionment, but I do still think there's a risk in giving up on it, in that it produces benefits we don't always notice, and if we lost those we would have less prospect of an improvement in the overall situation.
I wouldn't hold it against any of them either; people do as much as they can and as much as they can bear. Why be there if she doesn't want to? I think she wants to be there because she cares; I can't think of a reason for her to be there other than a desire to help. Am I right in thinking they don't get paid for their work on this committee? I thought I heard that, but I might be wrong.
Of course you don't have to argue any of that with me; you're quite right with all of that, and this is the fundamental problem. It's a widespread prejudice, there is a very significant body of opinion which still has old-fashioned views about ME/CFS, which is why breaking it down is incredibly difficult and takes a long time.
If you are saying that the prejudice and opposition to biomedical ME/CFS research cannot and will not be changed (I think that's what we're talking about here), then it seems your points boil down to just a feeling of complete despair. I really do sympathise and understand that, honestly I do, and I feel that way a lot of the time myself. But I can't just give up. And most of the time I do think - really I do think this is true - that things can and do change and they are changing, just incredibly slowly and too slow for many of us to notice the difference.
I think it's appropriate to compare the situation we talked about, re: attitudes of grant reviewers and prejudice about ME/CFS, with the history of issues like women's rights, or racism, or homophobia. Those issues have taken generations, centuries, for attitudes to gradually and slowly change, and what's driven the change has been long-suffering battling away by millions of people throughout history - and it still goes on. Yes, I know: we can't afford to wait that long, people are dying. Just as people died (and still die) in their campaigns for their rights in those other issues, and just as people lived and died and never lived to see the breakthroughs they fought for. God knows it's not right or fair, and it's not enough. I'm not arguing with you on any of that, really I'm just wanting to encourage you and everyone to keep plugging away because that's all we can do, and we can't afford to give up, either; that's how changes will come, eventually. That's all I'm saying, really: please don't despair, don't give up, persevere...
The chair we're talking about is the NIH rep on the committee. Basically all I'm saying is - to try to agree with you - in my opinion too she's probably as good as we will get, and to go a little further, quite likely a whole lot better than the alternatives we might get. Show me a better option and I'll take it. And in the end, while I agree with you that what we are getting (in terms of funding from the NIH, which is the bottom line here) is nowhere near enough - really, scandalously nowhere near enough, it's an absolute disgrace, beyond words - all I'm interested in is ways that the situation can be improved, in however small a way. I do know the problems, and how wrong it all is, but I want to hear about solutions; big, sudden ones if they exist, and small, slow ones if that's all that's achievable. We have to keep moving forward and not give in.
I don't see it as an argument, and it's certainly nothing personal. I'm just expressing a strongly held view, and, on this occasion, I'm not giving much thought as to the tone. I usually care about that sort of thing, but not at the moment.
Outside of her extreme anger, let's say I accept your view on Susan Maier. From where I sit it doesn't seem to matter what she thinks, if we ascribe to her the most friendly and positive of motives, because to her the situation remains a matter of there being not enough applications being presented. That to me is a fundamental misreading of a chicken/egg argument, and if that's what she believes, then why sacrifice her weekends? Now, I thought that her anger was directed at Eileen and not Maryanne Fletcher, but, regardless, it was directed at a person who I think understands the problem in a way that she does not.
I have nothing against--for instance--Lisa Corbin, either, but I heard her say that she sees perhaps 2 patients in a week who have what she characterized as 'true CFS,' with the remainder of the CFS 'referrals' that she sees...not being, uh, well, you know. That to me is a person who also lacks knowledge of the disease, and the problem that comes with it. This doesn't surprise me, since she saw fit to mention James Jones without stating that this is an individual who has denied the reality of the disease for decades.
For some reason I have no problem believing that her *non-ME* patients have great respect for, and like her, a great deal, probably with good reason (which is not to say that I would think her *ME* patients would not like her, but I would question whether she truly knows what Ramsay described, given the CME a few weeks ago). There are far more of those than there are of us, all over, thus the 1 million/4 million conflict we've been dealing with for years (with Cort defending use of the 4 million number for '
marketing purposes' on this very website not all that long ago).
If the majority of CFS patients are not ME patients, there's another factor that won't do Susan Maier or anyone else any good if they try to argue that research should be funded to investigate what's wrong with 1 million (likely less) ME patients when the larger pool of the other 3 million render biomarker establishment (or a response to a drug in a clinical trial) futile. Of course, this hinders drug development, since there are no established biomarkers after 30 years (and, to boot, there are some who argue that even NK cells will not be reliable, as there are reportedly similar findings in depression, though I would like to believe that Dr. Peterson knows more than they do) no matter how many times people try to argue that there are. So, no target, no drug; needless to say, it wouldn't do any good for those poor folks in Wichita who spend 48 hours a week on work + chores.
All this said, of course, in the big picture, our goals are the same. Granted. But after Thursday, I'm closing the door on ever expecting anything out of CFSAC but more of the same frustrations and headaches we currently endure, and always have. It's not acceptable that Eileen has to deal with this, and that I don't know how many patients have to powerlessly watch this play out, adding unnecessary anger, frustration, aggravation, and, yes, stress. Somehow I don't think Dr. Unger had too much difficulty with what was going on a few feet from her chair. No, I don't know that, but let's just say I can't imagine that would have upset her all that much. File that under more speculation.
But don't mistake my seeming apathy for despair. It's not. Frustration, yes. I just don't see this as a fruitful course of action anymore, if I ever did. Is that throwing in the towel? Perhaps. That's crappy, right? I was always told I have a crappy attitude. My crappy attitude says this is a complete waste of time. Now...as for the idea that it's great that we have this in this country, a privilege not seen anywhere else? Granted. But what good is it if it doesn't mean anything? I would like to think that we do indeed possess the privilege in engaging in participatory democracy. But that's not what this is. What this is, is a charade. In a way I'd almost prefer knowing that a meaningless charade is not available to me, provided, of course, that that's my view of what it is that's going on. People like White & Sharpe have the courage of their convictions--they say boldly what they either know is not true, or they believe in spite of mountains of evidence to the contrary. Wessely's a different animal, in that he argues in circles and always provides himself with an out so he cannot be pinned down on any particular point. This is how Unger operates, in contrast to Bill Reeves. Did you see at the last meeting how Steve Krafchick went around in circles trying to pin her down on some, any, sort of substantive statement on the Toolkit? In the end she was forced to flatly state, 'We're going to leave it up for now.' What he had to do to force that out of her was like water torture. And that's what we get in the end: it's not coming down. Not now, and not ever, if they can help it. CFSAC can do nothing about this, never could.
But what can they do? Do you think there is even one doctor out there who could say 'I learned more about ME/CFS from the Primer that was there because CFSAC recommended it, as opposed to merely what was available on the CDC website'? Maybe I missed it. If anyone could speak to that, I might reconsider. I don't see any evidence that anything they've done has made a difference, and we haven't budged from these large numbers of desperately ill people being treated poorly in doctor's offices, because of the entrenched perception of the illness. I just saw another example--today's dose of reality, if you will:
That's not CFSAC's purview, perhaps. Well, what are they there for, then? Because correcting things like that via whatever means is a huge problem. What can they really do about it? What can they do about anything? What are they there for? If they're there to do anything but give people the impression that they're trying to work on something, then how does a reasonable person not consider it/them to not be a failure beyond belief (not to mention words)?
Now...I try not to get hung up on the seeming futility of, say, the right to vote. Much is made of this--we have a right so many others don't, and it's disgraceful to not exercise it. Fine. But it's hard to just dismiss the argument that it doesn't seem to mean that much when one is in a solidly 'red' or 'blue' state, regardless of one's persuasion (and most of the population resides in states where an outcome seems predetermined, as opposed to a 'swing' state). Some knee-jerk and label people expressing such sentiments as anti-patriotic, or something. Well, I'm prepared to ask what good the right to have a CFSAC is if this is what we're faced with, year after year. The FDA meeting seemed great, right? Well, it was, if you could ignore what was actually being said. Did you see that Bernard Munos published his 'you people can do it and need to shoulder more responsibility' speech yesterday in an Elsevier journal? With the exception of the public comment, just about everything I heard there was either hostile, same old same old from a few of the same people, and patients trying to describe their symptoms, so as to try to educate the FDA folks (and I have long said that in order to even try to describe this disease, one inevitably ends up sounding 'crazy,' at least so far as of the perceptions of others). Then some guy gets up and asks for spit, and it spoke volumes about where we're at. :thumbdown:
I know someone who knew of one of the FDA folks, and recommended I speak with her. I've never spoken with someone more determined to get out of a room and as far as possible away from that venue as quick as she could, as this person was. I mean, I don't mind being blown off, but this was embarrassing. Seriously. Her advice was to speak with Theresa Michele. Yeah, okay, thanks. I'm not even a fan of Hemispherx, but I know when I"m being told to go fly a kite.
I came away from that meeting thinking some good seeds had definitely been planted, and that there was potential that good could come of it. But they didn't have that meeting because of us. They had that meeting because there are a number of diseases being granted the same meeting. Still, I wasn't anywhere near as cynical about it as I am about CFSAC.
Look, you guys do whatever you want. I'm not trying to discourage anybody. I'm not discouraged; like I said before, I think what moves us forward is private money. Initiatives that have nothing to do with government. I do have a concern that there may be some aspects of some of these that may produce research in great conflict with government guidelines, and that brings optimism, excitement, even, but until we see something come of these...we're still left with NIH thinking that awarding $600,000 for 'coping strategies' is money well spent. I saw a lot of 'advocates' awfully excited about $2 million for a psychiatrist to examine brain scans, which was characterized by someone I know as 'something Wessely would do.' So if that's what 'advocacy' is about, then I'm glad I do not now, and never did, think of myself as an 'advocate.'