Together
I am tired of reading someone's internal musings. I cannot follow it all with the cognitive problems we have in this disease. I agree with Fresh Eyes. Let's start a thread about CBT with people who have followed all the literature and know what they are talking about.
By all means carry on this thread amongst yourselves anybody who wants to do so.
I hope we're moving towards a way of dealing with these sort of disputes. I'm sure the new forum guidelines will be a big step forward. For some reason, I myself have ended up taking an interest in some of these arguments. I think it's because I always find it so easy to see both sides, to see where both people are coming from, and to see that they are both PWCs trying to do something valid (but different). So it's hard for me to watch friends falling out over misunderstandings when they both basically agree.
We won't get anywhere until we get over this sort of thing.
So here's my analysis.
On one side you have seasoned campaigners, radicals and veterans of the CFS scene, who are well-informed, fully up to speed on all the arguments, and with a clear set of political agendas to push. These people are wonderful and have done great things, and they have very strong points of view.
And
on the other side, there are now a whole load of us newbies. I've never posted on any forum before the news of XMRV broke. I've spent time searching for information, trawling the internet, reading whatever I could find - and then I've stopped and given up and concentrated on my real life instead because I was getting nowhere and my energy was limited. I've found out enough in the past to be aware of Wessely and be happy to call him Weasley on the basis of what I've read, but I've never heard of White until the last couple of weeks. I've looked for CFS campaigning organisations, but always been disillusioned with what I've found because none of them seemed to be taking a tough enough stance for my liking. So: I'm articulate and I have 15 years of experience thinking and reading about the issues, but I'm out of the loop on a lot of things.
I need to express my "internal musings", I need to talk through and think through the politics I didn't even know existed, and I need to discuss the issues with other PWCs.
So these two groups meet up, and sadly, sometimes, all that results is a big misunderstanding and a blazing row. "How is it possible you've never heard of White?". It's very, very easy. Most ordinary people have no interest whatsoever in all this stuff, and have other interests they would rather pursue. I personally know 3 other people with CFS, and I'm pretty sure none of them have heard of Wessely. They have hardly even bothered with the NHS after their early experiences; I doubt they're even registered in that 250,000 in the UK. We pursue alternative treatments. Personally I've been conscious for a long time of the CFS stigma, the irrationality of the diagnosis criteria, and of the psychological treatment, and I've studiously avoided going through the NHS route to CBT.
I never even went there. All tribute to those of you who've been banging your head against the brick wall for a couple of decades; I'd had enough of political campaigning against a wall of silence before I even got ill, and it never seemed to me to be a practical use of my limited energy. XMRV has changed that: there is something to use now, there's a basis for people to start listening to us. That's why I turned up out of the blue, along with a whole load of others.
Call it the XMRV effect. There are, I'm sure, thousands more like me who are poised to appear as if from nowhere.
The invisible illness begins to show its face. Many of us have never posted before, some of our experiences might be quite different, you seasoned pros might be wondering where on earth we're coming from and how it's possible we've never even heard of the Oxford Criteria.
So you wonder: can these people really have CFS? Well, I suppose us newbies could find a way to wonder the same thing about you: how on earth did these people find the time and energy to campaign and post online if they have CFS? I never considered the question before. It just seems like a really nasty accusation, and from my perspective, every single time I've seen it mentioned, yes quite frankly it does lead me to wonder about the poster's state of mind and their grasp on reality. Quite reasonably so, because it is always blatantly ridiculous. I'm sorry, but it is. Yet there's a pattern here: a number of really excellent campaigners are doing it, so I can only guess at the most charitable explanation: you must have been subject to some kind of infiltration in the past and you're very wary of it now.
So here's the problem that needs dealing with: how to accommodate people like me, who want to debate and decide (for example) whether Wessely is a severely misguided philanthropist or a monster; and also the seasoned campaigners, who want to carry on organising, analysing and discussing with like-minded experienced campaigners? How can we find a place for both?
I can only guess that the answer lies in organising and suggesting separate threads with specific agendas, just as Mithriel has suggested. Define a thread as being only for people who have "followed all the literature and know what they are talking about" if you like. I think that might be a useful separation, to allow another space for people who
haven't followed the literature and just want to find out more.
Alternatively, provide some well-presented summary materials on the necessary background and when people come in who are ill-informed, just refer us there. Ah, but here's the rub: does this well-presented summary of the issues exist? I've been referred to a few things, some of them interesting, but frankly I've not seen anything yet that cuts the mustard in terms of summarising the main predominant views of this forum in an intelligent and reasoned way. It's a bit hard to find such things from a bit of vague googling, so maybe it does exist, but I've not seen it linked to from this forum yet. Actually, that's where I'm hoping that this dialectic of confrontation between newbies and campaigners might lead us. I'd like to see all this wonderful and strong material gathered together, organised, and put through the fire of some genuine criticism, so that it can stand up to scrutiny. That's something us newbies can contribute, I hope: fresh perspectives from PWCs who are on side, but need the information well-presented and rigorous.
If this influx of ill-informed timewasters is significant now, just wait until we hit the news for real! There are millions of us. Millions. How many more members could this forum start to attract? We're going to need some good organisation and some new rules if this place is going to preserve the extraordinary quality of the discussion, the wonderful friendly atmosphere, and at the same time reach out to an army of PWCs hungry for information.
To sum up, I have to direct my suggestion to the seasoned campaigners. This is the moment you have been waiting for, for years, even decades. You have an army of new recruits arriving: hungry for information, armed with unexpected skills, expertise and contacts, filled with rage after decades of neglect, and poised ready to join your movement.
Don't blow it all by questioning our credentials or getting shirty with us for not being up to date on the politics. I think some cliches apply - about the people united; about how, divided, we fall; about what will happen when the broken-hearted people agree. So just everybody please remember your history lessons, think back, choose your favourite slogan, and realise that all this stuff about Unity wasn't just handed down to us from nowhere. It's simply the only way we can achieve anything significant: Together.