Discussion in 'General ME/CFS News' started by dasiymay, Nov 27, 2012.
*imagines Wessely as the Japanese commander*
So you are saying we should resort to the same type of tactics that the scammers. politicians use? This is exactly what I am talking about. We can't stoop to this level without expecting some backlash!!
I'm not sure how the rest of your post relates to what I wrote.
I don't think he is doing that at all. He's showing how difficult it is for ME patients, even when they do use rationality to explain the problems, which is a hell of a lot more than some of you seem to think, towards audiences who are not taught to be rational anyway, which is most human beings. And how difficult it is for ME patients, as any other human being, to be rational all the time. And let's face it: irrationality has pretty much ruled the roost when it comes to how ME patients are treated.
Am I right Alex?
The same tactics? No. Ignoring these methods? No. "Stoop to their level" ... emotional rhetoric. You use it too.
We have different audiences we want to engage. Scientists deal best with reason and evidence. Politicians may decide to file a carefully reasoned letter to the excellent round open filing cabinet that sits on the floor.
Is the whole climate debate rational? Are people reasonable on this? How about the expected resource crises and the current issues with failed management of market economies world wide?
Backlash? Unreasoned emotional responses like "You are all Nazis" will not achieve very much, and are hard to defend. I am not arguing for such. As I said, there will be many blogs on this next year. Reason gives us the analysis. The method of engagement with the target audience should be chosen reasonably.That does not mean that we should be using pure reason to argue our case for all audiences.
As for backlash itself, so what? Our situation could be worse, but not by a huge amount. There is always backlash in emotional rhetoric. Politicians use it all the time and yet sometimes it fails. Its a risk, not a certainty.
Most of my post has a simple point. Expecting everyone in the world to act rationally, all the time, is irrational.
Spot on Adamskitutu! We struggle to be rational, in my personal experience, but its so necessary because other modes of thought just don't work too well with us. How we have been treated, the whole history, and the history of pretty well all psychosomatic illness, is also not rational. Yet these are doctors, trained professionals! They use reason, that shouldn't be confused with being rational. Many are, maybe most, but not about everything. If you want to talk to an audience that would be bored silly with, or contemptuous of, cold rational science, or arguments in direct conflict with their world view, don't use those methods! We have arts for a reason. They are a powerful communication medium, just not science.
It's a slippery slope and sometimes we need to tread lightly.
It is indeed a something of a "slope" but we who suffer from ME are surprisingly capable of both reason and best directed things of the emotion. Now there's a thing to extra confound the psyches.
Absolutely!! We are very capable of doing this. Unfortunately, the reality is that people who don't do this are the ones who are overrepresented and get the attention. If we don't speak out against this, then we're not any better than those who spread this negativity. This applies to all sides/opinions whether coming from Wessley or our community.
Personally I think he knows his previous posturing looks increasingly ridiculous, and he is repositioning himself in order to perpetuate his status within the field as an 'expert' on ME when its quite obvious he and his his PACE friends are behind the curve. Bless eh?
There are numerous slippery slopes here. There are always risks. Not engaging is the big issue for us though, we have so few who engage for a whole lot of good reasons. Emotions help us engage, and help us cope, though one slippery slope is we might get too carried away and crash. Emotions shouldn't dominate reason, but reason is useless without emotion. Why bother being rational at all? Its emotion that gives us the motivation to do things. Its emotion that motivates others to do things.
Just engaging in mud slinging is not very useful either. We can do better by being more targeted. I see the intelligence, the interest and some capacity for the community to do so much more than they are doing. I also see lots of reasons why we don't. I am trying to find a path that makes this easier, that gives us more impact for the same effort, and shows us a way to get more on board who have capacity to help. I might make mistakes, I might not succeed in something, but its all a learning experience. Failure to risk is failure to succeed?
We are going to see a lot of anger, and a lot of emotive rhetoric no matter what we say, or what we do. When millions of people are treated this badly its inevitable. Its better, I think, to construct ways in which people who are interested can achieve far more, and put their anger and other issues to use in making things better. It doesn't matter either if they do it my way, their way, or some other way. Once they are engaged, and once there are some successes, then people will do more of what works (hopefully, its not guaranteed).
I do not think that we will succeed in getting proper enquiries up and running into various aspects of the bipsychosocial approach to CFS. We might get something to happen but how its set up can determine the outcome, by careful selection of those doing the enquiry or by carefully framing the terms of reference. However we need to at least try to do these kinds of things. Its another method to apply pressure. At some point something like that will happen, and it wont be pre-biased, so long as we keep applying pressure.
There are numerous other advocacy projects out there now. A few years ago there were hardly any. There is change coming, and its in our favour. That is in addition to the advancing science.
I think we are now to the point of debating semantics.
AIDS patients got what they needed from the government with over the top emotional demonstrations.
I learned long ago that, alas yes, reason has much less real world impact, hence:
You get more with the Bard of Avon and a 2x4, than you do with facts no matter how grave.
In politics when there are multiple agendas and you are being reasonable, my guess is you get prioritized. Right down the list, yes, there, near the bottom. There are two ways to get pushed up that list. The first is to use rational argument. Its not enough to make sense, or be reasonable, or have the facts on your side. You have to show that your agenda matches their agenda in some important way. Like its going to save the government a ton of money for example. Or that it will help a number of politicians get reelected. They might get around to you eventually, but only on their terms.
If you are being unreasonable but not criminal then it costs them a lot to ignore you. Multiply that by how many years you do this and how much inconvenience you cause. Complaining that we are making too many FOI requests for example tells me that we are not making nearly enough. I am contrary like that. Make enough noise and you get pushed up the list.
Or put it another way. You can be nice and get a pat on the head and be told you will be helped ... eventually. Or you can be nasty (but still rational) and get a much higher priority.
The tone of how this is done is important, and I suspect at least some of the disagreement with my proposal is due to the worry the tone of the campaign will get out of step with rationality. This is not an unfounded concern, but its also not inevitable.
For one thing I do not subscribe to promoting conspiracy theories, nor to making personal attacks. Accusations that cannot be proved are a problem. When something looks like it might be a valid accusation it is far better to pose it as a query, something to be explained, rather than make an accusation. In time with enough questions you can push for a formal enquiry. This does not mean you cannot name individuals. If for example you are disputing some statement or claim made in a paper by SW then its mandatory to cite the paper and the person. Keep this impersonal though, and show they are wrong if you can. This kind of reply is a scientific reply, not political.
However when a researcher steps outside of the usual role and makes big emotively rhetorical speeches on public media, thats politics. A researcher cannot have it both ways. If they act like a scientist they should be treated like one even if we think the science is pseudoscience. However if they act like a politician then they are inviting nonscientific reply.
Please note that I am not, and have never said, that the science agenda should be pursued with emotive rhetoric. It is strictly about the politics. When dealing with science it is still far better to use calm reason and facts in marshalling your arguments.
Reality check, here. The tone of advocacy over the last several years, has sometimes been "out of step with rationality" and this includes the political as well as the science venue. I think many of us have been in denial.
Is this getting better? I believe so. I really do. Is emotion okay? Of course!! But when it comes to advocating, we are being watched closely and need to think about strategies which include some serious damage control.
I am not saying we should sit back and do nothing.
I have said my piece and will now sign off and get some much needed rest.
So Wessley is trying to make himself, and his collegues look like the victims?
Unfortunately Jarod, if you read Firestorms post #3, then you'll see he's making rather a good case. In fairness SW is getting to cherry pick the allegations made against him that he wants to and can refute, never the less, many of those listed in Firestorms entry are the ones most often quoted on this and other sites.
I tried unsuccesfully when I first joined Phoenix to have people supply the evidence for such claims, not because I knew they were untrue but because I had mails from SW claiming they were untrue, I was actually offering his accusers a way to prove the man was the devious liar they hold him to be.
Suffice to say that moderation was somewhat more lax back then and I eventually succumed to a torrent of abuse and even at one point a suggestion that I was actually SW posting under a psuedonym.
I caution even yet about just accepting accusations on face value simply because they've been repeated so often that you would assume you want them to be true, why, because the truth gets lost in all the lies and we loose the argument by default.
We have an image problem, and we don't seem able to help ourselves but keep that image alive.
Had we always stuck to that which was true and that which could be proved there wouldn't be a thread regarding SW's recent award, take just the accusation that he threw a child into a pool, I was once told on this site that it was a documented fact, I've never seen the document all I've seen are claims that such a document exist, SW says in Firestorms thread that it doesn't, that it can't possibly. So, if you were a panellist, and you heard that a top professional in his field suffered that kind of allegation among others and there were no better examples wouldn't you be tempted to give him your vote for most courageous clinician?
As to death threats, while not directly made I've seen them defended on this forum, when you get people who think they're justified openly posting then it's not hard for those seeing such postings to beleive SW's claims that such threats have been made. See where it all leads, it leads to us beeing seen as the bad guys, and the Psych's being seen as the rational poorly understood professional, pushing ahead in trying to help us despite our objections.
Like I said, we've got an image problem.
Whoa!!! Simon!!! Very good. Very, very good!! Sometimes we need a "tough love" approach.
Are you able to show exactly where someone told you it was a documented fact that Wessely threw a child in the swimming pool?
Of course - the facts of that matter look very bad for Wessely as well, no?
It looks that - whatever some people might be getting wrong - the 'context' of these accusations are pretty grounded. something Esther said earlier on about the actual situation being even more worrying than these supposedly false allegations the community are making/misreading/taking out of context etc. struck a note with me. The 'disgust' comment, for example, is about Wessely trying to get neurasthenia used as the term for ME - even while he acknowledges- i.e. knows full well - the disgust doctors were expressing for neurasthenia patients.
What's worrying me is that some people are trying to pretend that these comments are benign and just misunderstood. But the fuller picture emerging from reading these comments of Wessely in context is that he is saying even more dodgy things than originally assumed.
Instead of believing patients are bad and taking things out of context just because Ben Goldacre and his buddies say so - I think it's more productive to explain how the full context is even more worrying, to all these hypothetical panellists allegedly swayed by this victim status Wessely is cultivating.
Whoa! Very very good !!!!
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