Wessely honoured with a knighthood for his work for GWS and ME
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Some, Possibly? Not nearly successful enough, I can say that without too much reflection.
I just think, soooo much attention goes to this man. who is one of a group. There are various international counterparts all over the world, parroting the same drivel.
It's not that patients aren't victims here, it's just that I don't think they can afford to be.
I wonder how many hours, how much energy and how much stress will be lost to this man over the course of the next few weeks, because he's won an award they also give to paedos and swindlers.
He can get a little too much credit at times. Despite this dogmatic psychosomatic machine that has been chuffing away and billowing out smoke for the past 25 years, the world hasn't entirely stopped looking elsewhere and at other causes. The more focus that goes on this man, the more ammunition he gets and the more misdirected the sparse energy that exists in patient communities becomes.
The man is both a pantomime hero and pantomime villain. He's got the world cheering and booing in perfect harmony.
The powerful are not looking for a scandal, especially surrounding people whose interests just happen to save them a bunch of money. They are looking for something to put a smiley face next to, in the interests of public approval.
Recently we had an opportunity as a community to pull together and help win some money for a Canadian research biobank to help support future research into our illness. Despite some amazing and tireless effort by several community members, this project was unsuccessful.
Have we come together to discuss how we can do better next time, brainstorming strategies for making sure we secure these vital funds since research into our condition is so woefully underfunded? Have we bollocks
But you can't move for threads about a certain bespectacled Krusty the Clown lookin' psychiatrist.
We're able to talk about things like, inflammatory cytokines, B-Cell irregularities, all that stuff, because of research and it'll be research that buries this dogma. The odds that some sort of charge against Professor Wessely will even halt the dogma he espouses are pretty slim in the first place. The day the cause or causes of ME are known, the next medically unexplained illness will be taking the same crap, the same opportunistic vaguely plausible misdirection. It is, how the world works.
At best, the chink in the armor is the Pace Trial. I've seen plenty of things wrong with it, do I have the energy to understand all the data perfectly? Probably not. If it is, as far as 'fraud', then at some point, a bunch of people are going to have to make that accusation, in name, with the full evidence to back it. It's going to take a very committed and personally endangering actions to see it through.
Of course, disassembling the the PACE trial doesn't even guarantee an end to BPS dogma either.
I think I'll make it my new years resolution to even stay out of these Wessely threads. I'm gonna take Ghandi's advice!
Marlène
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I'm in shock
A few weeks ago there was this article mentioning Gulf War Syndrome was caused by sarin nerve gas?!
http://www.newsmax.com/TheWire/gulf-war-syndrome-sarin/2012/12/14/id/467798
http://blogs.dallasobserver.com/unfairpark/2011/09/gulf_war_syndrome_is_brain_dam.php
Robert Haley, researcher at the university of Texas conducted the study
A few weeks ago there was this article mentioning Gulf War Syndrome was caused by sarin nerve gas?!
http://www.newsmax.com/TheWire/gulf-war-syndrome-sarin/2012/12/14/id/467798
http://blogs.dallasobserver.com/unfairpark/2011/09/gulf_war_syndrome_is_brain_dam.php
Robert Haley, researcher at the university of Texas conducted the study
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@ Stukindawski - I don't think that there would be this much discussion of Prof Wessely and posted quotes of his work over the years right now, if not for him seeking so very much publicity to portray himself as the injured party.
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@ Stukindawski - I don't think that there would be this much discussion of Prof Wessely and posted quotes of his work over the years right now, if not for him seeking so very much publicity to portray himself as the injured party.
.
Esther12
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The petition will just provide another excuse for 'Stupid CFS patients resent researcher who has done so much to help them just because they're afraid of the stigma of mental health' stories.'
I think Wessely is a really loathsome human being, and is probably (in competition with some of his colleagues) the person who has done the most to make my life worse (which could indicate I'm fortunate enough to have led a relatively charmed life), but I really couldn't be less bothered by him being knighted. Sir Wessely sounds pretty good to me. It suits him.
Bob
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Maybe best ignored.
Certainly helpful to focus on the science, and on more productive advocacy issues.
But, personally, I don't think that Wessely & co should be ignored, in general.
taniaaust1
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All that will do I think is cause some to further think he deserves it and is being harrassed by the ME/CFS group.
alex3619
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I do agree with those who are implying that we should not spend much time discussing this. We have a petition going, we have people leaving posts on various places, its time to move on to more productive advocacy. The knighthood is irrelevant. The "science" isn't. DSM-V isn't. The upcoming NICE review isn't.
The knighthood is just another political message. I do not know if I will ever use the Sir bit. Maybe. I have yet to decide. In analytical papers the titles a person has are usually ignored ... they promote bias. It doesn't matter if something is said by a Nobel laureate with a dozen degrees and fancy titles, or a first year undergrad, if the comment is valid then it valid either away, and if invalid then its invalid either way.
May I suggest as a subtle and ongoing informal protest we never use the "Sir", and that we focus instead on promoting useful science and debunking bad science, plus reforming care and support provisions for patients? (Slogan?: Never use the Sir!)
The single biggest issue we face right now (though DSM-V will dwarf this) is the disability reforms in the UK. If I recall correctly the UK government has stated publically that 32 deaths per week are acceptable. Some are now claiming 70 are dying though I have yet to see substantiating data, and in any case its not broken down into causes. How did they die? If its nearly all suicide then this is the biggest current problem we have. If its mostly suicide then again its a major issue. These are badly designed and implemented reforms, and need urgent opposition and major changes. Many of these patients will have ME or related disorders, so its very much our fight too.
As a side point, I have read that Simon W. is an advisor to the new DSM-V SSD diagnosis. I have not independently confirmed this. DSM-V will make things worse for nearly all of us, and based on field trials will even cause issues for up to 6% of the healthy population. About 25% of us (my interpretation of the field trials) will receive an additional diagnosis of SSD, a psychiatric disorder, if any doctor ever tries to use DSM-V in assessing us. That diagnosis is impossible to disprove so it will never go away.
If you haven't read it already please read:
http://www.psychologytoday.com/blog...2/mislabeling-medical-illness-mental-disorder
I submitted a very early comment to DSM-V. However I have always expected it to be released substantially unchanged. We have a major medico-political battle on our hands later this year, as does anyone with a complex or misunderstood illness, or who is distressed either by their illness or the medical handling of their issues.
In the meantime important biomedical research including Rituximab trials goes unfunded. That has to be a huge concern for us.
Simon W. is a figurehead. He is almost irrelevant in the big picture, though his actions have been consistently toward unproven psychogenic hypotheses for decades. It is unlikely, though not impossible, that we will ever convince Simon he is wrong. There are many tens of thousands of other medical professionals we can reach though.
DSM-V does offer us one positive thing. We might find we have allies in almost every patient group on the planet, and even unlikely allies within the medical profession including psychiatry.
Bye, Alex
The knighthood is just another political message. I do not know if I will ever use the Sir bit. Maybe. I have yet to decide. In analytical papers the titles a person has are usually ignored ... they promote bias. It doesn't matter if something is said by a Nobel laureate with a dozen degrees and fancy titles, or a first year undergrad, if the comment is valid then it valid either away, and if invalid then its invalid either way.
May I suggest as a subtle and ongoing informal protest we never use the "Sir", and that we focus instead on promoting useful science and debunking bad science, plus reforming care and support provisions for patients? (Slogan?: Never use the Sir!)
The single biggest issue we face right now (though DSM-V will dwarf this) is the disability reforms in the UK. If I recall correctly the UK government has stated publically that 32 deaths per week are acceptable. Some are now claiming 70 are dying though I have yet to see substantiating data, and in any case its not broken down into causes. How did they die? If its nearly all suicide then this is the biggest current problem we have. If its mostly suicide then again its a major issue. These are badly designed and implemented reforms, and need urgent opposition and major changes. Many of these patients will have ME or related disorders, so its very much our fight too.
As a side point, I have read that Simon W. is an advisor to the new DSM-V SSD diagnosis. I have not independently confirmed this. DSM-V will make things worse for nearly all of us, and based on field trials will even cause issues for up to 6% of the healthy population. About 25% of us (my interpretation of the field trials) will receive an additional diagnosis of SSD, a psychiatric disorder, if any doctor ever tries to use DSM-V in assessing us. That diagnosis is impossible to disprove so it will never go away.
If you haven't read it already please read:
http://www.psychologytoday.com/blog...2/mislabeling-medical-illness-mental-disorder
I submitted a very early comment to DSM-V. However I have always expected it to be released substantially unchanged. We have a major medico-political battle on our hands later this year, as does anyone with a complex or misunderstood illness, or who is distressed either by their illness or the medical handling of their issues.
In the meantime important biomedical research including Rituximab trials goes unfunded. That has to be a huge concern for us.
Simon W. is a figurehead. He is almost irrelevant in the big picture, though his actions have been consistently toward unproven psychogenic hypotheses for decades. It is unlikely, though not impossible, that we will ever convince Simon he is wrong. There are many tens of thousands of other medical professionals we can reach though.
DSM-V does offer us one positive thing. We might find we have allies in almost every patient group on the planet, and even unlikely allies within the medical profession including psychiatry.
Bye, Alex
Bob
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Interesting, thanks. But just to point out that the blog (the second link) says it was published in 2011.
taniaaust1
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The only way we can get out of all the mess Alex was talking about.. I think is via funding. Funding of good studies which will prove Wessely's ideas to be all wrong eg Funding of studies such as the Rituximab trials if if successful will prove our symptoms arent just in our heads.
And how will we get that funding? I think the patients need to make an effort world wide and possibly fund these important studies ourselves (also money is needed for the equipment for the Australia/Peterson immune studies). Yes I know we are all mostly poor and on disability or only working part time but if a world wide effort got put into us ourselves raising the money even if its only a dollar at a time. We could do it. We really need to group and start activity fundraising. Governments arent going to help us much at all (we've been trying that for so long), its time to start helping ourselves more and MAKING SURE the studies we need are being done.
And how will we get that funding? I think the patients need to make an effort world wide and possibly fund these important studies ourselves (also money is needed for the equipment for the Australia/Peterson immune studies). Yes I know we are all mostly poor and on disability or only working part time but if a world wide effort got put into us ourselves raising the money even if its only a dollar at a time. We could do it. We really need to group and start activity fundraising. Governments arent going to help us much at all (we've been trying that for so long), its time to start helping ourselves more and MAKING SURE the studies we need are being done.
alex3619
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The science is our eventual solution, to me there is no question of this. The politics however addresses factors that promote or hinder the science, as well as factors that complicate patient care. I have been concerned for more than three years now that if we ignore the politics then there may be a substantial delay before the science can assist us. On the other hand, the end goals are first to get science leading to treatment or cure, and then to make such treatment available to everyone who needs it. So even after the science gives us diagnostic markers, treatments or cures, politics will still play a part in this.
Bye, Alex
In Vitro Infidelium
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I believe this is the study in question: http://content.karger.com/produktedb/produkte.asp?doi=345124
biophile
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I doubt Margaret Williams considers herself to be part of the "fanatical lobby" instead of the "legitimate and polite" group, but if you wonder why she may take Wessely's generalized accusations in the news personally even if she was not named specifically, consider that according to this source anyway, http://www.meactionuk.org.uk/Corporate_Collusion_2.htm, Wessely has previously accused her of having "stalked" him, which she denies, so it would be understandable if she feels she has been indirectly included in his publicized recounts of what The Independent article referred to as stalking.
IMHO, we need to remember that no one has the power to control how we feel. We have given Wessely more power than is warranted. Negativity and stress can be highly contagious, so we can't allow our community to get sucked in. At what point do we decide we will not give him this status and focus on those things which are more productive than venting anger. While venting certainly has its place, at this point in time it has been done ad nauseum.
Focus on science which will hopefully gain greater insight about our illness Focus on effective political strategies to meet our goals. Focus on dialogue that makes a point without resorting to calling others names. Now these may not be as instantly gratifying as venting, anger or petitions driven by spite but science takes time. We are far more knowledgeable today than even several years ago. Yes it's slow and that is frustrating but it's reality. Science will out and all have turned some of the science community against us.
The fact is that we have deliberately forced him into a corner, sometimes by strategies that on closer look are dubious. He may have done some of the same things, however there's a point where we need to take the high road and just suck it up.
Hindsight is 20/20. We need to move on. As someone said above maybe it's also time to move on from these type of threads. It's gotten to the point that I don't even know which thread is which as they only end up trashing Wessley.
Barb C.:>)
Focus on science which will hopefully gain greater insight about our illness Focus on effective political strategies to meet our goals. Focus on dialogue that makes a point without resorting to calling others names. Now these may not be as instantly gratifying as venting, anger or petitions driven by spite but science takes time. We are far more knowledgeable today than even several years ago. Yes it's slow and that is frustrating but it's reality. Science will out and all have turned some of the science community against us.
The fact is that we have deliberately forced him into a corner, sometimes by strategies that on closer look are dubious. He may have done some of the same things, however there's a point where we need to take the high road and just suck it up.
Hindsight is 20/20. We need to move on. As someone said above maybe it's also time to move on from these type of threads. It's gotten to the point that I don't even know which thread is which as they only end up trashing Wessley.
Barb C.:>)
Hip
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Rather than a knighthood, a more appropriate award for Simon Wessely would be the:
The Hungry Vulture award was a real award actually given out by the Unum insurance company, which Wessely is nefariously linked to.
The Unum insurance company (formerly called UnumProvident), the notorious organization which managed to avoid paying out millions in legitimate ME/CFS disability claims with the help of Wessely et al's dishonorable efforts to present ME/CFS as an "all in your mind" disease, used to give Hungry Vulture awards to employees that were particularly adept at unscrupulously denying insurance payouts for legitimate disability claims. Reference: 1.
I should imagine that the total number of legitimate ME/CFS disability claims that have been unscrupulously denied due to Simon Wessely's sustained reprehensible machinations over the years must surely make Simon Wessely eligible for an Unum Hungry Vulture award, in a gratitude for all the money he has made this rogue insurance company, at the mere expense of the heath and welfare of countless ME/CFS patients.
Indeed, I suggest we call him:
Hungry Vulture Award
The Hungry Vulture award was a real award actually given out by the Unum insurance company, which Wessely is nefariously linked to.
The Unum insurance company (formerly called UnumProvident), the notorious organization which managed to avoid paying out millions in legitimate ME/CFS disability claims with the help of Wessely et al's dishonorable efforts to present ME/CFS as an "all in your mind" disease, used to give Hungry Vulture awards to employees that were particularly adept at unscrupulously denying insurance payouts for legitimate disability claims. Reference: 1.
I should imagine that the total number of legitimate ME/CFS disability claims that have been unscrupulously denied due to Simon Wessely's sustained reprehensible machinations over the years must surely make Simon Wessely eligible for an Unum Hungry Vulture award, in a gratitude for all the money he has made this rogue insurance company, at the mere expense of the heath and welfare of countless ME/CFS patients.
Indeed, I suggest we call him:
Professor "Hungry Vulture" Wessely
This doesn't surprise me in the least and IMO shouldn't surprise anyone else. Especially after Weasel was awarded the standing up for science award. And this isn't by coincidence or chance either he is receiving honors, titles and awards to bolster his credibility and integrity. Seems the truth was probably to close to the surface if anyone bothered to investigate and look. So those his work serves and benefits are covering it up with awards and titles to make him look unreproachable. Sniff Sniff (smelling the air) What's next a noble prize?
SilverbladeTE
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The Bigger They Are,
The Harder They Fall!
The Harder They Fall!
Never fear! Wessely himself was party to a study disproving our bias against mental illness:
Quite amusing, since in that paper the media was blamed for spreading the stereotype, rather ignoring that Wessely brings it up regularly himself.
adreno
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Right. It's telling that this is actually one of the most active threads on the board. I believe we could spend our time more productively. Light a candle instead of cursing the darkness.
Marlène
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I light a candle for a friend who died the same day this man was honored with a knightwood. She died a slow agonizing death because doctors were convinced ME is all in the head. By the time they were willing to look at her, her cancer was too big to be treated. Please let's all sign the petition to have ME on the political agenda as she requested on her deathbed.
http://www.familieberichtenopintern...ntie_pdf_a47e3e656074dde738f995d4557742e8.pdf
www.deziekteME.petities.nl