By that point, I was pretty confused about which bits wee sarcastic and which were not... I started thinking I understood, but not being sure, and got more confused from there.
Morning Esther,
Yeah I kind of lost it a bit. Realised that after retiring. What I was trying to get to was that in any large 'advocacy' group, there is generally deemed (perhaps by their 'unacceptable behaviour' perhaps as some sort of 'well there must be' construct) individuals who are collectively deemed 'militant'.
Any of those 'militants' rarely I would suggest see their own actions as being anything approaching 'militancy' or 'unacceptable' or as having crossed any social line. But to some people individual behaviour and collective reflection of that is deemed to appear to.
I dare say that those deemed to have 'hounded' and 'slagged off' Pemberton will not see their relentless activity in this light - and they may of course have a point. It is ever the case that those forming the opinion are 'wrong'.
What is happening now - or in danger of happening - is that individual actions are seemingly being seen as a reflection of the whole. It doesn't cost 'our community' anything to play to the social model and condemn the actions of the 'extremists' when their collective behaviour crosses any socially unacceptable line.
Now I am not comparing what has occurred (or not occurred) with Pemberton and (presumably might occur) with Thompson to anything approaching the collective 'death threats' of last year. What I am suggesting is that unlike last year people perhaps reflect more on how their actions might be construed when repeatedly responding to perceived 'threats' received on internet blogs i.e. the Daily Telegraph.
Not sure if even that little lot makes any sense.
Studinkawski - I referred to 'manic' behaviour not PC I admit and probably should have used a more considered term I suppose.
'Mad' I attached to Wessely I believe and more specifically to his assumed willingness to make such comments knowing full well they would be broadcast loudly across the internet and retained for all time - possibly out of context - and regurgitated as 'evidence' of his duplicity. Hell he probably did it on purpose to - as I said - see how the animals react and 'prove' his own point, if not (as I suspect) to be sarcastic and melodramatic. He does seem to enjoy citing the one-liners after all - and with this content he was certain of again getting into the news. Assuming of course the headline quote came from him - maybe the letters of complaint will reveal that to us.
When editing and proofing a tome from Dr Ramsay earlier in the year, I was reminded of a lesser-known repeated observation made by - I recall - pretty much all those involved in trying to piece together a clinical definition of 'ME' and that was 'emotional lability'. Now whether or not you (or I) believe that such a response is an inherent part of our condition - I think most people would agree on a basic level that 'we don't respond well to emotional stress'.
When the articles initially hit my inbox - my stomach went through the floor. I couldn't believe it. 'here we go again' I thought, 'has all our efforts been for nought?'
The actions of a few, the actions of the many, whatever, the repeated postings, the 'activity' level, the time of the postings, the pursuit on twitter... the overall 'reaction' to a threat perceived or otherwise, and the content of said postings... these things can and do reinforce not only the stereotype being posited by Pemberton et al. but also to me are displaying signs of 'manic' behaviour - but I also recognise that they could be signs of what has always been spoken about by medical professionals and patients alike - we don't respond well to stress and some people will go further in their reaction, by doggedly pursuing the deemed offender.
And hell I ain't excluding myself from that either at times. But all the time? No. And taken as a collective reflection by an uninformed and 'hostile' outsider - well seems to me that that one will run and run and run. I don't understand the need to be 'as involved' to that extent as some do and to make comments that are illogical at best and at worst inflammatory themselves - or plainly wrong and characterised as being authoritative. I don't feel the need to say something, anything, repeatedly, just to knock 'them' back as hard as I feel I have been knocked myself. 'Don't they understand! I am sick here!'
If you are going to go and comment about something that is not a reflection of your own personal experience, on a public forum, then you should at least try and ensure you are correct in what you say, or if stating an opinion then make it clear that you are doing exactly that. Hell, with this here internet malarkey and anonymous avatar's behind which to hide - who knows if you or I or anyone else even has a diagnosis of ME? And yet we all assume they do and are seemingly 'happy' to allow those with our condition to make asses of us all.
For the record: I am Russell John Fleming. Catch me on MEA Facebook or Facebook generally. Whatever...
Of course it is our own perception of who's comment, repeated comments, activity, actions themselves, opinion etc. are illogical, detrimental, abhorrent, and, indeed, 'militant'. And there are some who do not have ME and whilst not always qualifying why they have such an interest in our plight - are certainly (by their behaviour) creating an impression and reinforcing the (what I would deem) 'negative' collective stereotype that a few appear to cling to: and
Ms. Kennedy is one of them.
But you are of course right. It is in one sense 'wrong' to single out any fellow patient's activity and in doing so attach all blame to that person, and I didn't mean to do that. I think it was Alex that raised the question over 'ME Science' although he was spot on (though it could have been me I don't recall now).
Thing is surely, that on any particular forum when one (or more) person's activity is so 'manic' (yeah maybe not such a PC friendly use of the word, ok), so 'active', ah hell whatever the word/term you want to use - when a person or rather an avatar is seen so often on a public forum an impression is created. And if that avatar is happily stating nonsense, or replying aggressively, or heaven's forfend, actually deeming to have insider knowledge of how the community collectively feels - that I have ever right to object. Don't I? I mean I could have gone to the Telegraph and denounced each and every one of the comments I objected to - pointed out their fallacy etc. but I chose not to. And I don't only mean ME Science either.
As it was I 'recommended' those who did take the time to post something sensible and with which I agreed. That's alright, yeah? I mean all we're doing on these forums is expressing (to the best of our somewhat limited ability these days) our opinion, right? Our response and interpretation of what has gone before.
You know, I too have had a couple of what might be deemed by some to be 'threats'. It ain't nice is it? Especially not when they come from my fellow (presumably) patients.
One such 'threat' was titled: WE ARE WATCHING YOU! It proceeded to inform me that 'they' didn't feel I had ME and that I was therefore - I presumed - some sort of 'plant' by the psycho-brigade-collective. Said person, after being banned from the particular forum upon which I was a voluntary moderator - proceeded to 'stalk' me onto another forum and posed as my alter-ego-avatar attempting to 'reveal to the world' who I really was. Of course I didn't give a toss. But some do. Don't they?
Edit:
Added link above.