Simon Wessely on XMRV

[MEKoan]

You know, Joyscobby, we may have to lie there blue, naked and screaming at each other. But, whichever, we'll be very scary!

peace out,
k

ETA Yes, I'll bring the pee if you bring the blue stuff.

 

[condra]

Really disappointed to see this thread digress off topic so much.

 

[MEKoan]

Sorry about what part I played in that Condra but there were some problems that really needed to get sorted.

What would you say to starting a new thread on this topic which will not be burdened by the history on this one? You could fine tune the focus on a new thread.

Again, sorry,
Koan

 

[ramakentesh]

These guys always remind me of a boss I had. Three people at work came down with RSI and the boss went on and on about how it was all in their heads and that there was nothing wrong, they were being lazy and weak, etc.
Then by some twist of fate he got RSI. All of a sudden all we heard about was RSI and how terrible it was, on and on.

 

[Holmsey]

Homsley, being a fellow Scot thought it worth pointing out to you that although NICE and Wessely has had an influence in Scotland. But our getting our own Government 10 years ago and more recentky a SNP government (more free of labour and therefore Westminster control) has meant that there are now changes ahead in Scotland. Please see the consultation document linked. There is also Good practice Guidlines for GP (launched in may but not diseminated due to swine flu) not in the public realm but out there.

Anyway, here is the link. I hope it help you to move forward
http://www.healthscotland.com/uploads/documents/9715-Report - National Consultation Final.pdf

Thanks for this, it's going to take some getting through but at a glance it at least appears as some evidence that the case is moving foward. My imediate impression is that this is a serious attempt to put the patient first, while acknowledging that little has been done for us. Given budget constraints and the like however I still think there's a need to have the UK budget, on investigation and treatment, aligned in a manner that reflects our needs rather than our perceived needs.

 

[Holmsey]

Aw, Holmesy,

I love the way the quotes got all tangled up and you can't tell who's saying what anymore. That's exactly right now, don't you think? That's just what happened. And, it's over so we can all move forward together. I want to thank you for being so good about my being so hard on you.

Please take the opportunity offered to find out more about SW. I'm not even over there and I find what he has done heartbreaking and infuriating - Ohm!

I'm another Celt. Should this new peacefulness not hold we can all run naked at each other screaming.

peace out,
koan

New tactic for taking on the Government perhaps?

 

[Holmsey]

Really disappointed to see this thread digress off topic so much.

Not sure that clarifying positions, resolving doubts and regaining accord can be that far off topic but if you're serious about getting back on topic then feel free to kick things off, here's what I want.

For us all, to rationally, and definitively identify exactly what we are against with respect to SW. and in identifying how that definition can be brought to bear in a positive way.

I'm clearly devils advocate in a number of people's eyes I and don't intend to change my tack, my hope is that no one will take it personally but rather as a challenge, don't presume I beleive anything different, rather picture facing SW in open debate where the public are those you wish to convince. If you can't do it with me, here, you can't do it against SW.

 

[MEKoan]

There is nothing to be gained, and no point, in debating SW as to the nature of reality. When the etiology of ME is proven, which seems perilously close, it will be abundantly clear that Prof. Wessely has been deluded and has behaved badly as a result. I am not interested in debating someone who has spearheaded a mass delusion which had dreadful consequences for so many innocent people.

One may debate opinion but there is no point in debating fact.

peace out,
koan

 

[condra]

... if you're serious about getting back on topic then feel free to kick things off......

....I'm clearly devils advocate in a number of people's eyes

Hi Holmsey. As suggested by Koan, I've created a new thread where hopefully people can discuss Prof Wessely in relation to the XMRV breakthrough, and do so without resorting to long winded tit-for-tat arguments.

As a "free thinker" and skeptic, I enjoy respectful debate on any subject, and respect the value of people playing devils advocate. All sides of any argument should be represented and considered.

Having read this thread, I do think we could all benefit from trying to be a bit more diplomatic, especially when dealing with such an emotive issue.

 

[condra]

New thread is here:
http://forums.aboutmecfs.org/showthread.php?p=17072#post17072

 

[Holmsey]

Hi Holmsey. As suggested by Koan, I've created a new thread where hopefully people can discuss Prof Wessely in relation to the XMRV breakthrough, and do so without resorting to long winded tit-for-tat arguments.

As a "free thinker" and skeptic, I enjoy respectful debate on any subject, and respect the value of people playing devils advocate. All sides of any argument should be represented and considered.

Having read this thread, I do think we could all benefit from trying to be a bit more diplomatic, especially when dealing with such an emotive issue.

I agree entirely, although I feel it's a shame you had to start a new thread when this was already that thread, I / we, the detracters, should have moved over.

I don't mean this in a contentious way but it's almost like you're inviting comment on SW, but only as long as it conforms to a predetermined view, nobody is entirely one sided, I understand the arguments behind the retoric, so the down side is clear to see, but I'd like to pose a question.

Why do you think SW is as he is, I mean do you just think he's pure evil and set out to gain his position just so he could hurt people like us? It's clearly important to you so if you would, outline what you see as his motovation if it's not just misguided good intent to help us, give me something I can use though,not just opinion but evidence for your argument, think about what led you to hold the views you hold, even if it's only circumstantial?

 

[cold_taste_of_tears]

There is nothing to be gained, and no point, in debating SW as to the nature of reality. When the etiology of ME is proven, which seems perilously close, it will be abundantly clear that Prof. Wessely has been deluded and has behaved badly as a result. I am not interested in debating someone who has spearheaded a mass delusion which had dreadful consequences for so many innocent people.

One may debate opinion but there is no point in debating fact.

peace out,
koan

100% correct, and debating one's demise with 'Holmsey' who says ME patients are wallowing in self pity when they are actually dying from immune supression is equally pointless. (How someone who says such things can remain to be allowed on here, the good Lord only knows).

Maybe next, Garry Glitter will sign up to Childline in the interest of 'debate' also.

 

[Holmsey]

There is nothing to be gained, and no point, in debating SW as to the nature of reality. When the etiology of ME is proven, which seems perilously close, it will be abundantly clear that Prof. Wessely has been deluded and has behaved badly as a result. I am not interested in debating someone who has spearheaded a mass delusion which had dreadful consequences for so many innocent people.

One may debate opinion but there is no point in debating fact.

peace out,
koan

Koan, I really hope you are right, but lets assume that it isn't, that it's just another stepping stone on the way.
What do we hold SW most accountable for? My guess, from what I'm reading is that he's slowed down, by years if not decades, a serious and urgent search for the root cause of our illness, and therfore also it's treatment.
That's the point in debating him, to anhyalate his view point we need an argument which holds more water, which has more appeal than his, he doesn't give himself jobs, he doesn't set his budget, ultimately the UK government do. To have any chance of changing that we need an opportunity to destroy his position, to prove the case of our position, getting that opportunity is going to be difficult but imagine getting it and blowing it because we were't clear, we wearn't united in what our case was.

 

[misskoji]

Holmsey

I believe this more than anything when it comes to SW and his stance, profit is his motivator.

Levi Pointed this out in another thread

"Wessely is a member of the supervisory board of a company named PRISMA. This same company is being paid many millions of pounds to supply rehabilitation programs (such as CBT and GET) to the NHS for use on CFS patients (Mar 2004, [Online]). Wessely is also an officer of UNUM (large insurance company)."


UNUM is a huge disability insurer, and its policies typically exclude disability coverage for functional (psychiatric) illness. They have a vested interest in seeing that CFS/ME stays solely in the realm of psychiatry, and have bought SW on board as a gatekeeper for CFS patients. This is conflict of interest and bias of the highest order, since a finding of an organic cause of CFS/ME is directly against his financial interests. Same goes for his relationship to PRISMA.

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1354956

 

[Holmsey]

100% correct, and debating one's demise with 'Holmsey' who says ME patients are wallowing in self pity when they are actually dying from immune supression is equally pointless. (How someone who says such things can remain to be allowed on here, the good Lord only knows).

Maybe next, Garry Glitter will sign up to Childline in the interest of 'debate' also.

You know Cold, I've been asked to back off where you're concerned because you're own story gives you certain rights to bitterness, but frankly if you have the energy to dish it out then in my opinion you can certainly withstand getting it back, and if not why not go join Garry and the other kids.

My reference was to being chest deep in victimhood, but if you prefer self pity go for it. I've never disputed 'OUR' symptoms, I've asked questions about irrational or unsubstanciate attacks, frankly because I don't have the time or energy to wade through them to get to the worth while bits.

If this is simply a platform for bellyaching can a senior member point that out to me, if not then tell me what it's actually about? One minute it's pointless debating SW the next there's two ongoing threads.

Cold, change the record eh.

 

[Holmsey]

I believe this more than anything when it comes to SW and his stance, profit is his motivator.

Levi Pointed this out in another thread



http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1354956

Great, thanks for this.

Verifiable as to it's veracity, deviod of opinion or emotional content. SW has already implied in mails to me that he beleive's others such as WPI are motivated by monetary gain, specifically in the supply of potentially unnecessary and expensive testing for XMRV. If this pans out then I've caught him in the act of missleading, no if's or but's and that's what I've been looking for.

 

[Holmsey]

Great, thanks for this.

Verifiable as to it's veracity, deviod of opinion or emotional content. SW has already implied in mails to me that he beleive's others such as WPI are motivated by monetary gain, specifically in the supply of potentially unnecessary and expensive testing for XMRV. If this pans out then I've caught him in the act of missleading, no if's or but's and that's what I've been looking for.

Ok, another fast turnaroud to SW, I questioned him directly on the specific claim, and as he's given me written permission to post anything he says already, so here's the mail.

Simon, you made reference in an earlier mail about others profiting from the XMRV research, by the supply of testing etc. inferring in the process that as an NHS employee your motivations were above suspicion, but obviously, as this isn't a personal attack, I'd like to here your comments on this posting.



Wessely is a member of the supervisory board of a company named PRISMA. This same company is being paid many millions of pounds to supply 'rehabilitation' programs (such as CBT and GET) to the NHS for use on 'CFS' patients (Mar 2004, [Online]). Wessely is also an officer of UNUM (large insurance company)."


UNUM is a huge disability insurer, and its policies typically exclude disability coverage for functional (psychiatric) illness. They have a vested interest in seeing that CFS/ME stays solely in the realm of psychiatry, and have bought SW on board as a gatekeeper for CFS patients. This is conflict of interest and bias of the highest order, since a finding of an organic cause of CFS/ME is directly against his financial interests. Same goes for his relationship to PRISMA.

Any truth in any of it?
.

The reply was -

Was a non exec of prisma. (Ie unpaid) for about 18 months cos they said they wanted to do research. Resigned when it was clear they weren't going to. This was god knows when but perhaps 10 years ago. Never ever worked for Unum. Done one perhaps 2 talks at unum sponsored meetings. Not about cfs as far as I recall

As ever the reality I am afraid differs from the fantasy, he says with resignation

.

So people lets go to work, substanciate the original claim with proofs.

 

[dipic]

SW has already implied in mails to me that he beleive's others such as WPI are motivated by monetary gain, specifically in the supply of potentially unnecessary and expensive testing for XMRV.

Are you f***ing serious? SW is a raving loon if he honestly believes this. Of course, he doesn't, which is even worse.

What a sad little man to imply such a thing.

 

[MEKoan]

Holmsey,

Am I right in assuming that you are copying posts from this site, identifying them as such, and sending them on to Wessely for comment? Forgive me but, that seems a very odd and inappropriate thing to be doing. SW is perfectly capable of monitoring the conversation here without your assistance. Also, should he wish to comment, it would be best that he do so directly.

I remain appalled at certain remarks you have made. I am at a loss as to how to comment on them without becoming judgmental. I avoid this more for my own benefit than for yours. I ask you only to consider what might motivate you to write the things you do. I am at a loss as to why you do so. I can only assume you are unable to prevent yourself for, surely, you would try.

You say you "do not have the energy to wade through". I ask you to consider the wisdom of spending your energy the way you are. I invite you to spend your energy on research and not debate. I suggest it might better be spent looking at the long and troubled history of ME in your part of the world than by reporting to SW the comments of the posters here. It must take a lot of energy to copy ours and his and email and post same. When you add venting spleen to that, you can't have much precious energy left.

In any new endeavour, it is best to start by educating ourselves as to the history - yes, both sides of any issue - before leaping in and taking action. I respectfully suggest that you have not yet done this.

I hope you are able to take some of this on board for your own sake. We are each accountable only for ourselves.

peace,
koan

 

[Holmsey]

Are you f***ing serious? SW is a raving loon if he honestly believes this. Of course, he doesn't, which is even worse.

What a sad little man to imply such a thing.

I am, I pasted the mail as it was returned.