Angela Kennedy
Senior Member
- Messages
- 1,026
- Location
- Essex, UK
@ Ester,
Re your point to me: "If the emotional outbursts you were concerned about were reasonable, then surely it would be preferable to have them used as examples of our extremism, as on a public forum context and explanations can be seen, where as when the psychologisers reference private correspondence or personal experiences no-one can check up on them and they’re generally just given the benefit of the doubt."
Firstly, it's not just 'emotional outbursts' I'm concerned about, it's reasonable objections as well. Secondly, as I've already tried to explain to you, in the world of ME/CFS politics, reasonable objections are misrepresented in ad hominem attack on the community by the people you want us to talk more with. The community does not have the resources, power or ear of the media to counter every ad hominem attack that's been made on patients and their supporters. But with regard to any 'emotional outbursts', we are still talking about a besieged community of people undergoing terrible illness, psychogenic dismissal, and consequent construction as deviant, with all the material and social exclusions and inequalities that situation brings (and some of us are carers suffering more indirect but maybe similar levels of adversity). Any person who makes any comment with a tinge of completely understandable 'emotion' may still find their words used against them, and this may bring even further adversity their way. It's one thing to make statements in more formal settings: to find yourself in a position with a negatively-disposed powerful medic who is posting where you've come for informal support and more informal and congenial discussion of issues is fraught with danger.
I do think it significant you use the word 'extremism'. What do you mean by that?
Regarding your comment: "To me, a prior certainty in your own sanity seems more likely to be indicative of madness than an acknowledgement of the difficulty of coming to such a conclusion". Really? So we're all mad by default, unless we admit we're mad? This has a certain circularity of reasoning resonant of the witch-hunting era. And what do you mean by madness?
Regarding your point "I really don’t think it’s that clear cut at the moment. To me, it really doesn’t seem as if this debate is over, for example: If it was really so one sided, then shouldn’t the debate be won at wikipedia, and CFS classed as a physical illness? When I read discussions between those who claim CFS has been proven to be a physical illness, and those who are still unsure, it never seems to end in a clear victory for certainty that CFS is a physical illness."
You either have not been following what goes on at Wikipedia, or you support the what others see as abusive treatment of advocates that have gone on there? Or are you not aware of the capacity for abuse of power at Wikipedia on various subjects? You may need to go to a forum entitled 'Wikipedia Review' (google it) and read it at length to understand some of the problems that have gone on there (not just around 'CFS'). Do you REALLY think there's this polarised mass of those "who claim CFS has been proven to be a physical illness, and those who are still unsure"? Why do you portray people as attributing 'CFS' as organic as claimers of proof, while psychologisers are the reasonable 'still unsure'? That's certainly not an accurate account of what's gone on at wikipedia. There's reams of archived talk pages about both 'CFS' and indeed 'Simon Wessely'. How much of that have you read?
One more thing: in 2004, after a quote of mine was used by the Countess of Mar in the House of Lords, Simon Wessely wrote an email to me that worried me deeply, and which I made public because I considered it a matter of public interest. More recently a defamatory claim was made about me, and involving him, on Wikipedia. I think you may be unaware of the possible personal cost of trying to engage with proponents of the psychiatric paradigm, directly or indirectly.
Re your point to me: "If the emotional outbursts you were concerned about were reasonable, then surely it would be preferable to have them used as examples of our extremism, as on a public forum context and explanations can be seen, where as when the psychologisers reference private correspondence or personal experiences no-one can check up on them and they’re generally just given the benefit of the doubt."
Firstly, it's not just 'emotional outbursts' I'm concerned about, it's reasonable objections as well. Secondly, as I've already tried to explain to you, in the world of ME/CFS politics, reasonable objections are misrepresented in ad hominem attack on the community by the people you want us to talk more with. The community does not have the resources, power or ear of the media to counter every ad hominem attack that's been made on patients and their supporters. But with regard to any 'emotional outbursts', we are still talking about a besieged community of people undergoing terrible illness, psychogenic dismissal, and consequent construction as deviant, with all the material and social exclusions and inequalities that situation brings (and some of us are carers suffering more indirect but maybe similar levels of adversity). Any person who makes any comment with a tinge of completely understandable 'emotion' may still find their words used against them, and this may bring even further adversity their way. It's one thing to make statements in more formal settings: to find yourself in a position with a negatively-disposed powerful medic who is posting where you've come for informal support and more informal and congenial discussion of issues is fraught with danger.
I do think it significant you use the word 'extremism'. What do you mean by that?
Regarding your comment: "To me, a prior certainty in your own sanity seems more likely to be indicative of madness than an acknowledgement of the difficulty of coming to such a conclusion". Really? So we're all mad by default, unless we admit we're mad? This has a certain circularity of reasoning resonant of the witch-hunting era. And what do you mean by madness?
Regarding your point "I really don’t think it’s that clear cut at the moment. To me, it really doesn’t seem as if this debate is over, for example: If it was really so one sided, then shouldn’t the debate be won at wikipedia, and CFS classed as a physical illness? When I read discussions between those who claim CFS has been proven to be a physical illness, and those who are still unsure, it never seems to end in a clear victory for certainty that CFS is a physical illness."
You either have not been following what goes on at Wikipedia, or you support the what others see as abusive treatment of advocates that have gone on there? Or are you not aware of the capacity for abuse of power at Wikipedia on various subjects? You may need to go to a forum entitled 'Wikipedia Review' (google it) and read it at length to understand some of the problems that have gone on there (not just around 'CFS'). Do you REALLY think there's this polarised mass of those "who claim CFS has been proven to be a physical illness, and those who are still unsure"? Why do you portray people as attributing 'CFS' as organic as claimers of proof, while psychologisers are the reasonable 'still unsure'? That's certainly not an accurate account of what's gone on at wikipedia. There's reams of archived talk pages about both 'CFS' and indeed 'Simon Wessely'. How much of that have you read?
One more thing: in 2004, after a quote of mine was used by the Countess of Mar in the House of Lords, Simon Wessely wrote an email to me that worried me deeply, and which I made public because I considered it a matter of public interest. More recently a defamatory claim was made about me, and involving him, on Wikipedia. I think you may be unaware of the possible personal cost of trying to engage with proponents of the psychiatric paradigm, directly or indirectly.