What community ? There are contributors to this thread who are already being attacked by our 'fellow patients' on other forums, merely for holding views that are 'unacceptable'. The past five years have seen successive 'vocal, vexatious minorities', drive every dissenting reasoned voice away from any public discourse about M.E in what has become a progressive Talibanisation of the illness, where 'we' (the true believers, the belongers) is described by a witless anti psychiatric polemic.
There is a community, IVI. At least for me there is. I don't see eye to eye on all matters with every ME patient. But I find that most of us have had very similar experiences, we have the same needs, and we want the same outcomes. We all express ourselves differently, and go about things in different ways, but we are, as a community, pushing ME research and recognition in the right direction.
I've had arguments and disagreements with people about XMRV, and various other subjects, but I know that we are all on the same side. We just have different ideas about how to go about getting the outcomes that we want. (When I say "all of us", I mean the
vast majority of people I come into contact with.)
I think you've got a one-sided view about things, IVI. There was a debate about XMRV, but it wasn't a one-sided discussion. People did express their misgivings about XMRV, often forcefully and persistently. I know that some people got a hard time sometimes, when they expressed their skeptiscism about XMRV, but it wasn't entirely one-sided. Those of us who expressed our support for XMRV research were also at the receiving end of troll-like behaviour sometimes. In any case, we are all still here, discussing other subjects in a civilised manner. I don't think I have made any enemies after our XMRV discussions. I certainly don't think any less of anyone else for having opposing opinions to myself. I've had some arguments with people who I really respect and like.
I don't know what you mean about a minority 'we' being described by a witless anti-psychiatric polemic, as I would have thought that a large majority of the ME patient 'community' considers ME to be a biological/physiological disease, based on good evidence.
Hyperbolic claims of "been systematically lied to for decades", only reinforce the
Masadaist internalisations of a myth of collective oppression that underwrites the increasingly cult like script that those who claim The [M.E/CFS] Community as their own, wish to see to played out. One can find exactly the language of "systematically lied to" on Alien Abductiontist websites, and it is exactly the kind of rhetoric that flows from such an internalised perspective which feeds the zealotry of those who feel free attack and harrass those who they identify as oppressors. No reasonable person wants to be part of community like that - if only for the most practical reason that all strategies for 'winning' that flow from it are doomed to fail, indeed they are lost from the outset because it is a fundamental error to accept the the enemy's description of the 'war'. Fight on the enemy's ground you lose, fight on the enemy's terms, you lose, allow th enemy to 'describe' you, you lose.
Saying that we have been 'systematically lied to for decades' inidicates
neither paranoia or irrationality.
It is based on evidence and first-hand experience.
You only need to look at the PACE Trial (and the reaction to it, from the authors, the media, the Lancet, some in the medical profession, and the Science Media Centre) to see clear evidence of the facts being twisted and misrepresented.
I can provide you with evidence if you need it.
Not only have we been lied to, over the years, but we have been systematically medically neglected, maligned, and mistreated.
Does, Pemberton's scribbling harm the interests of M.E/CFS patients ? Yes ! But the idiots who bombarded his email and twitter accounts only provided him with more ammunition, lesson = those idiots are fighting the wrong battle or the right battle in the wrong way. For some the motivation is probably emotional unburdening - unthinkingly getting their rocks off, for others, a degree of manipuation is probably involved, those who like to watch the crowd running in the wrong direction, or who want to play flag wavers or generals. But all we really need to know is - it's just dumb to fight like that and anyone who is serious about community building needs to start by making it plain that 'belonging' demands integrity and consideration - not fanaticism. I will not be holding my breath though, Pemberton and others will continue to excite the attention of the mob and they will continue to confirm for Pemberton and the bulk of his readers that opposition to psychiatric definition of M.E/CFS is evidence that M.E/CFS is by definition a psychiatric illness.
As I said in my earlier post, if Max Pemberton concludes that ME is a psychiatric illness because he has a post-bag full of protests from the public, then it says more about him than it does about ME patients.
How can opposition to a psychiatric definition be considered evidence that ME is a psychiatric disease? That's absolutely perverse.
I'm surprised that you think writing a protesting letter gives him ammunition.
In fact, all the complaints that he has received seems to have stopped him from writing any more about the subject. So the activism seems to have had a beneficial outcome. (I'm not condoning illegal activity.)
Campaigning, or activism, does not indicate 'fanatiscm'. Many of us campaign.
I've found plenty of integrity and consideration on this forum, so if you've not found it, then maybe you aren't looking.
IVI, if you don't understand why so many patients feel frustrated and angry when people accuse us of having purely a psychological illness, then you need to start asking forum members why they have those reactions. Please don't just dismiss that anger as evidence of a flawed character, because it isn't.