Roy, I don't claim to know anything about the history of the CAA but I do agree with everything you are saying about aggressive campaigning, a direct action approach, and what Peggy Munson is saying in her blog about the need to demand recognition and respect. Die-ins, demos, rallies, whatever - I'm there.
I also agree that the CAA, like the MEA in the UK, are often personally frustrating to me: these large 'mainstream' organisations are much more conservative and cautious in their public stance than I would like, and I think they have failed to put us on the map and to represent the immense anger and frustration that the patient community feels.
In my experience this is virtually always the case with large and well-established campaigning or charity organisations once they have "gone mainstream" and established connections within bodies of authority. This pattern is not at all unique to ME/CFS, it is perfectly natural and in the nature of politics that organisations make compromises, and become compromised, as they work to try to influence the people and organisations against which they are campaigning. For people operating at a pragmatic level, the caution they need to exercise in order to gain the broad public respect necessary to achieve small but tangible results always blunts the radical edge and causes frustration to those who want to speak out simply and plainly.
One can think of it like this. Systematically: one can make a very strong statement which will be heard by very few people, or a very weak statement which will be heard by many people. The impact of the statement can perhaps be crudely represented as the product of the strength of the statement and the number of people who hear it and take it seriously. Whichever way you slice it, you quite likely end up in the same place. If you speak out strongly and tell the whole, awful truth, people aren't ready for it, and they dismiss you - now and forever: you lose public respect. If you make a weaker statement, many more people might take seriously what you have to say, but that comes at the price of not being able to say very much.
One example of this dynamic is that, after years of caution, Dr Vernon recently accused the CDC study of being 'designed not to detect XMRV'. That's an extremely strong allegation to make - albeit almost certainly true and indeed only a small part of the picture - but I'm sure that this comment had more impact politically than it would if Dr Vernon were always saying things like that; conversely, the act of making such a statement does have a personal cost in terms of credibility as well.
Another recent example from the UK: The ME Association has recently succeeded in getting the UK to impose a long-overdue blood donation ban, getting national news coverage about the ban, and contradicting the official line that this is 'for our protection', emphasising that this is clearly because of the fears over XMRV. The rest of the more radical UK ME/CFS organisations have been campaigning too, we have been writing to the UK press, trying to cultivate relationships with journalists, trying to get the word out about the Alter/Lo study (which hasn't been reported here), trying to get ME/CFS and XMRV into the news. And we have failed, where the MEA has succeeded.
That ought to sum up where organisations like the CAA and MEA inevitably sit within the political spectrum. There is nothing whatsoever new about this situation, it is just politics. Politics is the art of compromise. It's unpleasant, and arguably ultimately dishonest, therefore, but if you want to really change things and make a difference, sometimes you have to do what's necessary in order to get a seat at the table.
It's not my natural way at all. I can't understand conservatives, cautious people; I don't know how they can exercise the restraint and caution that they do, but that doesn't mean I don't respect them. Their way is not my way, but I do know at least that they are sincere and that they do have a positive impact with their approach, however small and frustrating that impact may be. Even in my own life I have learned that toning down my message and the way I express it makes it far more likely that people will listen to what I have to say; the effect can be quite dramatic actually.
So my conclusion really is this: if we want to see a radical voice, then that voice has to be, as it always is, an authentic, independent, constantly renewing grassroots voice. Every new campaign that rises up and takes an aggressive stance, will in time evolve into a more established body that is regarded with scorn by the next generation of activists. That is the process of perpetual change. And so the things that we are all talking about now - in many threads here recently - need to happen outside of the established organisations, and they will coalesce into a new movement that will influence the CAA (and probably already is doing so), and that movement will grow, just as we want it to, until it starts to have a powerful influence...and then, as it does so, its voice will in turn gradually become muted and, like the CAA, and like Phoenix Rising, there will come a time when it too comes to be regarded with scorn by an even more radical new generation of activists. If we are still here and fighting in another 20 years time (and I sincerely hope we won't have to be), maybe Pandora will be seen as the new voice of conservatism. But if so, then a new wave will always arise to challenge it.
This is all partly to try to put things in perspective, and partly to try to say to you and other former members of the CAA that you shouldn't feel downhearted or betrayed by the process or the history of the CAA, nor to feel any of that history as a personal failure, a defeat, but rather as part of a universal political pattern. And it's also a plea to disaffected activists to recognise one thing at least, that those more conservative voices in the movement are sincere, and they are on our side, even if they have a completely different approach than the one we personally want to see.
I have read everything you have written with interest Roy, but there have been just two snippets, which have been highlighted by others, that do cross a line for me, and that is where you criticise Cort personally as a bully, and talk about him fracturing the online community. Two comments which come very, very close to completely destroying your credibility in my eyes. I am quite sure that many have written off everything you have to say and hit the "Ignore" button on the strength of those two sentences alone. And if you persist in such unfair character attacks on Cort, then likely you will indeed eventually be banned from PR for that, regardless of your pedigree. I have said it before: Cort, like any other member, should be entitled to the protection from personal attacks that the forum rules provide to all members.
I want to see appropriate, direct, radical activism organised, discussed and advertised on this site. I have never seen any attempt whatsoever to oppress such discussions, in fact quite the reverse, I have seen enormous efforts here to allow a place for those voices. The line is quite clearly drawn: the forum rules do not allow for attacks on individuals, and I am not going to get drawn into an argument over whether Cort is a 'bully' (other than to say that that is a ridiculous allegation that does you no credit, and arguably a bullying behaviour in itself), I'm just going to say that the precedent is there that such behaviour is not tolerated here against anyone, including Cort.
Practical proposals please. Specific calls to action. Congressional Oversight Hearing: I agree. Work at this political level should be a very high priority.
I have a proposal for the UK, then. I want to know why there is not a well-publicised annual rally/lobby/sit-in at parliament on May 12th (World ME Awareness Day) every year. My biggest question to the MEA would be: Why do you not organise such an event and give sufferers and their carers, family and supporters a means to express their anger? I think we need such a focus to exhert political pressure on those who have silenced us. I do want to see us all gathering in London regularly. May is 7 months away, we have time to organise something significant. We can put pressure on the MEA to support or to at least publicise such an event. Anybody else can publicise lobbies, demos or sit-ins here, so why have I (almost) never seen any such attempts? We could even have a constant vigil outside Wessely's psych centre in London, or the Science Media Centre. Check out "The Love Police" to learn more about your rights to stand on the streets of London with a megaphone and use sarcasm to tell it like it is...
Anybody can do these things. Anybody can organise and publicise them here. Nobody is stopping that. So rather than complaining about what other people are doing, the far better approach is to re-create something better yourself. It is possible to keep the message creative, positive, radical, dynamic, without needing to attack those who take a different approach: so please, let's all get together around something constructive and leave out the bashing of other activists - that gets us absolutely nowhere.
I also agree that the CAA, like the MEA in the UK, are often personally frustrating to me: these large 'mainstream' organisations are much more conservative and cautious in their public stance than I would like, and I think they have failed to put us on the map and to represent the immense anger and frustration that the patient community feels.
In my experience this is virtually always the case with large and well-established campaigning or charity organisations once they have "gone mainstream" and established connections within bodies of authority. This pattern is not at all unique to ME/CFS, it is perfectly natural and in the nature of politics that organisations make compromises, and become compromised, as they work to try to influence the people and organisations against which they are campaigning. For people operating at a pragmatic level, the caution they need to exercise in order to gain the broad public respect necessary to achieve small but tangible results always blunts the radical edge and causes frustration to those who want to speak out simply and plainly.
One can think of it like this. Systematically: one can make a very strong statement which will be heard by very few people, or a very weak statement which will be heard by many people. The impact of the statement can perhaps be crudely represented as the product of the strength of the statement and the number of people who hear it and take it seriously. Whichever way you slice it, you quite likely end up in the same place. If you speak out strongly and tell the whole, awful truth, people aren't ready for it, and they dismiss you - now and forever: you lose public respect. If you make a weaker statement, many more people might take seriously what you have to say, but that comes at the price of not being able to say very much.
One example of this dynamic is that, after years of caution, Dr Vernon recently accused the CDC study of being 'designed not to detect XMRV'. That's an extremely strong allegation to make - albeit almost certainly true and indeed only a small part of the picture - but I'm sure that this comment had more impact politically than it would if Dr Vernon were always saying things like that; conversely, the act of making such a statement does have a personal cost in terms of credibility as well.
Another recent example from the UK: The ME Association has recently succeeded in getting the UK to impose a long-overdue blood donation ban, getting national news coverage about the ban, and contradicting the official line that this is 'for our protection', emphasising that this is clearly because of the fears over XMRV. The rest of the more radical UK ME/CFS organisations have been campaigning too, we have been writing to the UK press, trying to cultivate relationships with journalists, trying to get the word out about the Alter/Lo study (which hasn't been reported here), trying to get ME/CFS and XMRV into the news. And we have failed, where the MEA has succeeded.
That ought to sum up where organisations like the CAA and MEA inevitably sit within the political spectrum. There is nothing whatsoever new about this situation, it is just politics. Politics is the art of compromise. It's unpleasant, and arguably ultimately dishonest, therefore, but if you want to really change things and make a difference, sometimes you have to do what's necessary in order to get a seat at the table.
It's not my natural way at all. I can't understand conservatives, cautious people; I don't know how they can exercise the restraint and caution that they do, but that doesn't mean I don't respect them. Their way is not my way, but I do know at least that they are sincere and that they do have a positive impact with their approach, however small and frustrating that impact may be. Even in my own life I have learned that toning down my message and the way I express it makes it far more likely that people will listen to what I have to say; the effect can be quite dramatic actually.
So my conclusion really is this: if we want to see a radical voice, then that voice has to be, as it always is, an authentic, independent, constantly renewing grassroots voice. Every new campaign that rises up and takes an aggressive stance, will in time evolve into a more established body that is regarded with scorn by the next generation of activists. That is the process of perpetual change. And so the things that we are all talking about now - in many threads here recently - need to happen outside of the established organisations, and they will coalesce into a new movement that will influence the CAA (and probably already is doing so), and that movement will grow, just as we want it to, until it starts to have a powerful influence...and then, as it does so, its voice will in turn gradually become muted and, like the CAA, and like Phoenix Rising, there will come a time when it too comes to be regarded with scorn by an even more radical new generation of activists. If we are still here and fighting in another 20 years time (and I sincerely hope we won't have to be), maybe Pandora will be seen as the new voice of conservatism. But if so, then a new wave will always arise to challenge it.
This is all partly to try to put things in perspective, and partly to try to say to you and other former members of the CAA that you shouldn't feel downhearted or betrayed by the process or the history of the CAA, nor to feel any of that history as a personal failure, a defeat, but rather as part of a universal political pattern. And it's also a plea to disaffected activists to recognise one thing at least, that those more conservative voices in the movement are sincere, and they are on our side, even if they have a completely different approach than the one we personally want to see.
I have read everything you have written with interest Roy, but there have been just two snippets, which have been highlighted by others, that do cross a line for me, and that is where you criticise Cort personally as a bully, and talk about him fracturing the online community. Two comments which come very, very close to completely destroying your credibility in my eyes. I am quite sure that many have written off everything you have to say and hit the "Ignore" button on the strength of those two sentences alone. And if you persist in such unfair character attacks on Cort, then likely you will indeed eventually be banned from PR for that, regardless of your pedigree. I have said it before: Cort, like any other member, should be entitled to the protection from personal attacks that the forum rules provide to all members.
I want to see appropriate, direct, radical activism organised, discussed and advertised on this site. I have never seen any attempt whatsoever to oppress such discussions, in fact quite the reverse, I have seen enormous efforts here to allow a place for those voices. The line is quite clearly drawn: the forum rules do not allow for attacks on individuals, and I am not going to get drawn into an argument over whether Cort is a 'bully' (other than to say that that is a ridiculous allegation that does you no credit, and arguably a bullying behaviour in itself), I'm just going to say that the precedent is there that such behaviour is not tolerated here against anyone, including Cort.
Practical proposals please. Specific calls to action. Congressional Oversight Hearing: I agree. Work at this political level should be a very high priority.
I have a proposal for the UK, then. I want to know why there is not a well-publicised annual rally/lobby/sit-in at parliament on May 12th (World ME Awareness Day) every year. My biggest question to the MEA would be: Why do you not organise such an event and give sufferers and their carers, family and supporters a means to express their anger? I think we need such a focus to exhert political pressure on those who have silenced us. I do want to see us all gathering in London regularly. May is 7 months away, we have time to organise something significant. We can put pressure on the MEA to support or to at least publicise such an event. Anybody else can publicise lobbies, demos or sit-ins here, so why have I (almost) never seen any such attempts? We could even have a constant vigil outside Wessely's psych centre in London, or the Science Media Centre. Check out "The Love Police" to learn more about your rights to stand on the streets of London with a megaphone and use sarcasm to tell it like it is...
Anybody can do these things. Anybody can organise and publicise them here. Nobody is stopping that. So rather than complaining about what other people are doing, the far better approach is to re-create something better yourself. It is possible to keep the message creative, positive, radical, dynamic, without needing to attack those who take a different approach: so please, let's all get together around something constructive and leave out the bashing of other activists - that gets us absolutely nowhere.
. 
