Firestormm, the good people over on Bad Science, and Wessely himself, I would say are indeed pretending these comments are benign and just misunderstood.
The comments are not benign. If you look at the full context of what is written, the whole articles, the comments are really not benign at all. And then you have to factor in all the other articles - in the hundreds - where Wessely's comments are blatantly not benign. I note the Bad Science people are not doing that.
The situation here is like saying that, because some people were hateful towards Japanese citizens of the US in world war 2, the allies had no case against the axis. At the end of the day it is clear supporters of Wessely are trying to smear patients, and some people here are expecting patients to walk on egg-shells in an impossible game of 'never be wrong'. They are unwittingly helping those who are smearing patients.
I don't like seeing this focus on patients as irrational here - just because some people have got the wrong end of the stick.
If you post an opinion, Adam, about me for example, then it's your opinion that can be debated. If you post what you are purporting is a 'fact' about me and that 'fact' is inherently wrong, then your opinion upon which it is based is left wanting. Dangerously so - even without getting into matters pertaining to libel.
If more than one, several, many, purported 'facts' that comprise a general opinion of a specific person are wrong or have been subjected to interpretation; then any argument that has been built around that persons beliefs and behaviour - will be seen as wrong. Or at least as being far less right.
This is true of 'life' but we need to acknowledge - at least - that we are aware of the 'other side' of the argument. And that part of our own argument can and will be challenged. We need to be aware of that and not consider such challenges as personal.
The argument being forwarded about Wessely is that, over a great many years, he simply 'doesn't get it' and rather more ominously - he doesn't get it deliberately with some other motivation. That his opinions and more - his 'power' - have directly led to my condition and patients with my condition with whom he has been involved - as being undermined and mistreated.
For those who cling most ardently to this central tenet - there is no 'other side' to any of the arguments being advanced. There is only a blinkered full steam ahead approach. There is no acknowledgement that they are only expressing an opinion. To them it is 'fact'. He is the devil.
Now look at the report from the Science Media Centre. The reported threats and harassment etc. made against Dr Crawley following her published intention to look at the Lightening Process for possibly treatment in kids:
http://forums.phoenixrising.me/inde...versay-brochure-threats-of-persecution.20704/
People are so against the Lightening Process that anyone who looks into it is deemed to be irresponsible - or worse. And why? Because the LP has been deemed as undermining what is believed by some to be the real cause of their condition and by association - Dr Crawley is evil. How can she even be considering taking this approach to kids? How dare she! How potentially damaging and dangerous etc. etc.
The only acknowledgement that the LP has had any positive effect on those who have tried it - was to say at the time - that such people can't possibly have had ME. That this study might demonstrate the LP to have no measurable effect on children is not even considered - generally - in the comments that I read on-line around the time this study was announced.
And anyway, Dr Crawley, was already deemed the devil by some fools, because she had been pooh-poohing the WPI. And of course 'XMRV' was numero uno at the time too.... enough said about both of those.
'We' - the online ME community - are so quick to deem a person as 'anti-ME' that once tarnished in whatever way possible - we will disregard their opinion or work that is subsequently produced. Despite the fact that some real people might be helped by whatever intervention or part they might play.
Such people have no less right to declare themselves as having ME as we do. They receive a diagnosis as we do. They are as desperate as we are. They will take a 'suck it and see' approach as we will all in reality do - if a treatment is being recommended to us by our own doctor.
I read, for example, Wessely's supposed speech to the UNUM conference (?). I thought to myself, what a bloody dumb subject to speak about. 'Collusion' between doctors and patients. Who on earth dreamed that one up? I could well imagine the impression that those in the audience (supposedly those who processed claims relating to medical conditions), would have left the conference with.
I could also well imagine the reception to that speech that would have been engendered from doctors! But was this really what Wessely thought was happening in the WHOLE of the NHS for example? Did he really mean that all doctors were intentionally colluding with their patients to invent things to mislead - to ensure that things might be recorded as worse than they really were in order to ensure the insurance paid up? Did he?
Is this a reflection of what can happen? Will you at least consider that it might? That my doctor (one or all of them) want me to be as supported as they can hope for me to be - and that they will help by writing reports reflecting how hard my life has become - and that in doing so, they are indeed in 'collusion' with me?
Are they 'guilty' of exaggeration? Are Atos at my medical assessment (on the other side of the fence)? Were the Tribunal panel at my Appeal - both of the separate Appeals - both of which I 'won'?
Consider disability aides. I recall (like the 'collusion' above - and I haven't returned to study either of the texts previously advanced so this is all based on my wonky recollection and general impression - but that's what we're talking about here, right? Impression and generalisation.) that Wessely is often deemed to feel that the provision of disability aides serves to reinforce the notion a person is disabled when they'd be better off struggling on - with help - to overcome this incorrect belief.
Now, I believe it has been concluded from this, that Wessely therefore feels it inherently wrong to see a person with ME in a wheelchair for example. And that may indeed be a logical extension of his notion. It might also be wrong. Over and above the evidence that, for example, other doctors and specialists might have recommended a wheelchair to a person with ME (an individual and not everyone with the condition), there is - as at the present moment in time - NO consensus evidence that for example, ME results in (i.e. causes) an erosion of the muscles to the extent that patients can no longer rely on them to support their weight - for example.
Wessely, and those same prescribing doctors, might believe in individual cases, that other factors and that when taken as a whole - all have led to a person being unable to maintain mobility. That as a whole a person's disability has become so dire that they might endorse such a move to a wheelchair or indeed to any other aide that helps with mobility - such as a stick to help with support and relieve the 'vertigo' - or indeed a motor-scooter to help people get out and about under their own steam (more or less) or to remain upright for longer or able to walk for longer and get some exercise.
We don't know. We only have that piece of 'evidence' that Wessely feels that disability aides reinforce (from my wonky memory) illness beliefs. And it is an opinion that is worth - outside of the box - some consideration. Are all people we see in the street - or from our bedroom windows - in need of the aides that they use? As an exercise in lateral thinking and without judging anyone it might be worth a thought or at least a nod that the notion does exist.
How many people who do use wheelchairs have had them recommended to them by specialists? Does that recommendation make their use of such aides any more or less valid? Every time I venture outside for a walk - do I need my stick? Do I? What would happen if I didn't take it? Well, I would not feel I could continue walking as far. But I consider the notion that I could be depending too much on this aide and that it might be holding me back.
Do such consideration completely screw and occupy my thoughts? Yes. There is a great danger that they do. It's an easy and short route to thinking 'Am I making this all up?' and 'Do I need to constantly prove to people that I really am unable to walk very far?' Simple truth is that I do. I also and more importantly, need to do this for myself. And I do that by trying. But that's just me. Others are less fortunate.
I, and you, might disagree with everything that Wessely has written (not that we can ever say we have read everything - something else that is frequently overlooked - opinions are based on a few examples - unless you are a Wessely scholar and I'd suggest he isn't worth that kind of attention - nobody is!); but we should at least acknowledge his point - in that instance and from that source - at the time it was said - unless he has said it since.
What has happened is that ALL these bits and pieces of 'evidence' have been loosely brought together and advanced in such a way as to gain support from others. Namely, that Wessely is not only 'anti-ME' and the devil but he is responsible personally for the mistreatment of patients!
No. I don't have to agree with what is said or assumed. Even and especially as a patient with ME. And if someone on any forum or Wessely himself, takes a quote, that has been used and posted by someone else, and shows the quote in context with it's correct meaning - then I don't really care who does it.
It is the person who sends the quote around the internet out of context, or incorrectly, enforcing their own opinion (or that of the originators) of it on others who don't or cannot check the source themselves; those are the ones that I will seek to correct. Not their opinion of the person concerned but the quote they are repeating.
My personal opinion is that personalities should remain outside of any argument and we shouldn't label any individual. And I haven't even been talking about the threats, their substance or the reaction to their coverage by some of my 'fellow patients'....
Son of Sam