IVI,
If you wish to respond to my posts then I'd appreciate it if you didn't chop my text up into tiny little out of context sections before replying. The paragraphs I wrote were intended to support one another, and should be treated as a single unit. It's a habit that leads to very disjointed conversations. If I was now to chop up your reply in the same manner, then we'd both rapidly lose sight of what we were originally talking about.
Anyway, now I've got that off my chest, I'll try and deal with the points you've raised.
Firstly, what you describe as “health advocacy” is, in most cases, little more than fund raising (not that there's anything wrong with that). If we confined ourselves to just that activity, then I'm sure our relationship with the medical profession would be entirely harmonious. However, if that's all we did, then most of the money raised would simply end up in the pockets of people like Simon Wessely, and we'd end up with more “centres of excellence” offering nothing but CBT and GET.
What underpins our difficult relationship with the medical profession is essentially a power struggle. We (or at least many of us) are not just trying to raise funds, we're also campaigning for basic patient rights such as the right to choose our own medical treatments, and the right to a much greater say in the direction of future (government funded) medical research. That's primarily where the friction lies. Our demands are not unreasonable when you consider that it is ultimately us patients who are paying the bills. As the saying goes “he who pays the piper calls the tune”.
So what we're asking for should not, in any sense, be considered controversial. Unfortunately, medicine does seem to attract people with an authoritarian streak. A self-serving paternalistic attitude still permeates much of the profession, particularly at the upper echelons. The very notion that patients should be allowed to choose their own treatment is still complete anathema to many doctors. Many of them see our modest demands as a threat to the power and status of their chosen profession. And they certainly have no inclination to “negotiate” with us. To believe otherwise is incredibly naive. As far as they're concerned, the only negotiation that should take place is between themselves and other healthcare professionals. This is not me being paranoid or conspiratorial. I've experienced this attitude from doctors, at first hand, many times over the years. And I'm sure others here will tell you the same.
Whether we like it or not, there is a political dimension to our struggle. This is the elephant in the corner that the main UK ME charities continue to ignore, and is one of the main reasons why they continue to be so ineffective in promoting our interests.
You may consider ME to be “just” a health issue but from the perspective of many sufferers (including myself) the issue is every bit as important as Apartheid, Slavery, or Universal Suffrage. I regard access to healthcare as a basic human right, and it's a right that ME patients are routinely denied.
Incidentally, you've picked a terrible historical example in which to back up your case. The rebuilding of London's sewage network in the 19th century was motivated as much by self-interest of the rich and powerful, as by a genuine concern for the poor. After all, everyone living in London at that time was forced to share the same filthy environment, and cholera doesn't discriminate between rich and poor. And just as importantly, that particular concession to the proletariat didn't involve any actual transfer of power.
With regards to your comments on AIDS activism, sorry, you're just plain wrong. I don't really know what else to say. You can dismiss it as a “meme” if you like, but AIDS activism is an easily provable historical fact. Many of us around here are old enough to have lived through it. It happened, it was international in nature (not that it would be any less important had it been confined to just the United States), and it was very successful.
You're also very wrong about the importance of the internet. It's rapidly changing our society in ways that we're only just beginning to appreciate. It represents a huge threat to traditional power structures everywhere. That's why governments around the world are desperately trying to bring it under control with ever more draconian legislation.
There's a hell of a lot more to internet activism than DDoS attacks, although I believe that is a legitimate and effective tactic to employ under some circumstances. I've already mentioned several rather obvious ways in which we can apply pressure - FOI requests, complaints to the GMC, judicial reviews, etc. We can also respond very rapidly to articles written by people such as Simon Wessely in medical journals and the mainstream media. Of course none of these things are exclusive to the internet, but they're all made a damn sight easier if you have online access.
That's really the key point here. The internet is as much an enabler as anything else. For a start, it gives us access to a vast amount of information that would have been impractical to obtain as little as 20 years ago. And as the saying goes, knowledge is power.
20 years ago, we were all isolated from one another, and completely in the dark. The only easily accessible source of information for UK patients was the ME association's magazine. And the information in that publication, whilst often useful, was all filtered through the eyes of just one man, which is hardly ideal. It's not that long ago that I used to go to my local hospital's library and pose as a medical student in order to obtain up to date information on the latest ME research. Thankfully, I no longer need to resort to such drastic measures as that same information, and a whole lot more, is now just a few mouse clicks away.
In those pre-internet days, we strongly suspected that something was very wrong with the healthcare system, but couldn't prove it. We wondered why so little research seemed to be taking place. We wondered why the ME specialist we'd been referred to paid lip service to ME being a “real” condition, but only seemed to offer psychological therapies. The internet has changed all of that. We now know for a fact that we're getting screwed. We know why we're getting screwed. We know many of the key players involved. And last but not least, we can do something about it. That to me is a huge step forward.