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But really, what on earth can explain this whole medical blind spot, I just don't know. I've heard that it's a long-established part of the history of medicine to treat anything it doesn't yet understand appallingly badly. Multiple sclerosis patients have only recently been promoted out of the 'punchbag' category - as soon as we came along to take their place, it seems - perhaps there always has to be a convenient scapegoat for some sadistic reason. But how it can still be the case, after all the lessons of history, that the world of medicine is still carrying on in the same way, in the 21st century, just boggles my mind.
Thanks ever so much for that link Rich; it does indeed illuminate the question that keeps boggling my mind.
I think a heck of a lot of people - maybe most people - now understand that big pharma has a powerful interest in not approving replacement, cheap, or natural therapies, so that anything they can't patent has more and more of a disadvantage as they get more and more powerful. A lot of people cobble that into a conspiracy theory, but those with more understanding realise that it doesn't really work that way; it's the structure of the system that does it, not a cabal of evil geniuses. I often put it this way, to people with business experience who will understand how institutional stupidity functions: if you are looking at a spreadsheet with a set of various options to be studied, the business cases will determine which ones get through, often without anybody's eyes even being on the details. The one that has no pay-off because IP can't be obtained has no chance: the costs are hundreds of millions, and the reward is zero. With the best will in the world, none of the people inolved can force something like that through - the directors could go to prison if they did stuff like that.
Are you familiar with the psychoanalysis of capitalist corporations as psychopaths? A company has legal status as "a person", but this "person" is legally bound to the principle of maximising profit for its shareholders - it's a "person" whose sole interest is in making as much money as possible, and that's enforced by the law. As such, as time goes on, it literally can't have any moral principles, it has no emotion or humanity even though it's legally a "person", it has to do what makes money, and anything good it does is achieved by the inefficiency of having to be run by humans, who do whatever they can to modify its behaviour, but technically whenever they do anything human or decent that doesn't maximise profit, the directors are breaking the law by letting them do it. So this person, if they were a human, motivated 100% by pure greed, would be labelled a psychopath. Ergo: all corporations are psychopathic, no matter how hard their founders try the whole "don't be evil" thing.
So anyway: that's the part that lots of people get, how the research gets skewed by the financial interests of Big Pharma, even though far too many make it a personal thing and not a systematic thing.
What I was struggling with, and your link has helped with, is to start to think about the instititional pressures and the systematic structures that play on MDs. There's some fantastic insight in that interview (along with some quite extraordinary but very believable claims to those who've had similar experiences). Sadly, the whole thing is so appalling - I mean, it really is such an unimaginably anti-human, evil situation - that we all just really struggle to accept it: it's too monstrous for our heads to hold it. There are some aspects of this that really make me despair sometimes, because I can't think of any argument that would ever have convinced me of some of the things I know now, if I hadn't experienced it directly myself. I see the looks of disbelief when I point out some of the realities, and frustrating as it is, I have to think: well fair enough, I would never have believed something so outrageous if I hadn't seen it myself, and I can see how it would rock somebody's entire world-view to take these truths on board: it's frightening stuff.
It's still really hard to fathom, even in the interview; hard to explain or excuse the behaviour of somebody who, presented with clear evidence of remarkable, totally credible, life-saving results, right in front of their eyes, still doesn't follow it up and has no interest whatsoever in it because it's not what it says in the book. I think I could spend a lifetime with such a person and never understand them. But I can at least understand that I know this is how most people are: they do their job, follow the rules, as they're trained to do, and they figure if they do that, nobody can fault them. And most people are ruled by the fear and insecurity of losing what they have, I guess, no matter how much they have.
So I can see a lot more of it now, I understand the process a lot better, though I guess I'll never really understand the whole thing.
I have a couple of examples from my own experience that absolutely confirm what this interview says about MDs. One is a doctor who I've seen several times, not through choice, but because of a hoop I have to jump through from time to time. Last time I saw him, I mentioned XMRV. He'd never heard of it. He interrupted to say something like "I only go with peer-reviewed research"...and I said it had been in Science, so peer-reviewed of course, and was very high quality, and he said he only read the BMJ, and when it was in the BMJ, he would go with it. I've known this guy for a number of years (and sadly, I can't get him for malpractice for the want of a photograph), and I know for sure that he is purely interested in going by the book (and he even failed to do that in my case so I guess that's hard enough for him!), in a nice easy comfortable setting, with no pressure and no risk. So I can recognise that part of it all, in him. I can also recognise in my current GP, who I like quite a lot, that here's a guy whose hands are tied: he would love to do more, but he just can't access the information, or do anything with it: the system doesn't give him the time or space he would need to do his own research, and as Dr Myhill and Dr Wakefield illustrate, the risks to him if he did go outside the box would be extreme.
I've been agonising for a while now about what I can post about the second example, and concluded I can't risk it right now, which kind of says it all! if I say the wrong thing now, I might never be able to get the information out without immense personal hardship ensuing, and maybe I can find a way to reveal it without taking that personal hit. And I'm not 100% convinced it's enough of a smoking gun to be worth it. So I guess I've just proved the whole thing to myself: if you're anywhere near the medical world, the rewards can be immense, but the risks involved with doing the right thing make it unbelievably hard to navigate the minefield, and everything screams at you to toe the line. Even with the best will in the world, you have to weigh up when is the best time to play your hand, and what good it would really do. Just as with MDs: go outside the rules just once, and you can end up out of the game entirely, and then, on balance, you can't help nearly as many people in the future, so have you really done the best thing you could do? It's really tough sometimes...
Final thing, right at the end of the interview, which was a fascinating exchange. The interviewer looks forward to the day when all these medicines are accepted and on the books and we can all reap the benefits. Berkson's philosophy is more subtle but very principled and I agree: the way forward, instead, is for patients to have free, open, transparent access to all the information, and crucially, the choice as to what path to follow. I agree entirely that's the better and fairer strategy, although I would add that what humanity needs more than anything is a widespread understanding of how our institutional structures oppress us all, and that it's not about the individuals, or the great hidden conspiracy, because the real conspiracy is embedded in those virtual structures that systematically produce the results we all decry, and we'll never get anywhere until we all understand that and get to work on dismantling, reformulating, and just plain turning away from those colossal mistakes.
Thanks again for a really great link Rich.
I recommend that you read this interview with Burt Berkson, Ph.D., M.D. I think he has some excellent insight into this issue you have raised.
Dr Myhill will now be able to practice again as a doctor.
that's great news! But after this whole witch hunt, will she be able to practice treating ME patients like before or will she be cornered to treat them according to NICE guidelines of CBT and GET? Is the fight for justice really over?