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Simon Wessely wins prize for "Standing Up For Science."

biophile

Places I'd rather be.
Messages
8,977
I wonder is singling Wessely out allows others to get away with some very poor science. Isn't it Prof White who should be questioned for ignoring the PACE protocol and failing to publish results. Also I think we should talk of the institutions rather than the individuals. I assume that Queen Mary's is the sponsoring organisation for PACE and it is Queen Mary's who say that it is normal to ignore the published protocol for a trial in reponse to FoI requests. I wonder if this is a view that the vice chancelor would be willing to defend in public. Universities can be sensitive about their reputation and should be ensuring a high standard from their staff.

Peter White's own claims about harassment are outlined in the Nigel Hawkes article:

http://www.bmj.com/content/342/bmj.d3780
Nigel Hawkes said:
Peter White, professor of psychological medicine at Barts and the London School of Medicine, was the principal investigator of PACE. He says the campaign against the trial has gone on ever since it was first funded. “There was a campaign by the ME Association, lots of letters to organisations involved, not least the MRC, and a petition to No 10 Downing Street.

“It did upset our ability to recruit patients, and it took up a lot of time. Complaints and Freedom of Information requests have to be dealt with properly. The paradox is that the campaigners want more research into CFS, but if they don’t like the science they campaign to stop it. They want more research but only research they agree with.”

Professor White has been accused of coercing patients, paying general practitioners to enlist patients, having conflicts of interest, and accepting improper financial contributions. These accusations, which he insists are all untrue, have also been sent to his employers. In Dr Hamilton’s case, the dismissal of the complaint to the GMC was followed by Freedom of Information requests for the evidence the GMC had gathered from his five employers and in its case handling. “The GMC hadn’t the grace to tell me this—it still hasn’t—but my employers did,” he says. “As far as I know this stage still grumbles on.”

I could not help but notice this part:
Nigel Hawkes (June 2011) said:
Professor White has been accused of coercing patients, paying general practitioners to enlist patients, having conflicts of interest, and accepting improper financial contributions. These accusations, which he insists are all untrue, have also been sent to his employers.

Compared to this:
The Lancet (February 2011) said:
Conflicts of interest: PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company).
 

Enid

Senior Member
Messages
3,309
Location
UK
One begins to wonder if the claptrap of the psyches modelling of ME imposed for decades is peculiar to the United Kingdom - then why have they held such an impregnable position - those of us here know only too well the closing of ranks in the hierarchy of medicine.

With all the science and discoveries pouring in now in Neurology, Immunology, Virology etc - have these people any future. Over 50 years battle in the UK for the correct recognition of ME, who can have sympathy for any personal sleights (real or imagined) for the psychiatrists who fight to preserve their status quo and disregard the hard science.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
Ad hominem attacks, whether deserved or not, tend to invite more of the same in response. It doesn't seem to move anything forward to carry on that kind of argument, especially since the powerful will get their viewpoint more widely heard and believed.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Wessely is not responsible for everything that people appear to be accusing him of. He is often in my humble opine - a rather convenient scapegoat for a lack of popular scientific progress towards cause, a lack of more effective treatment and dare I say it - a distinct lack of cure.

It's far more than this, Firestormm. Wessely and his colleagues have been instrumental in aggressively promoting the cognitive-behavioural model, and they have been influential government advisers, and medical insurance advisers.

I don't know the full history, because I've only been ill for 8 years, but they do have a history, along with the CDC.
I agree that history has conspired in such a way as to make life easy for them, but they are not bystanders.
If ME had been treated as a biomedical illness by the CDC, the MRC, the UK government, and others, then we'd could be in a very different place with regards to biomedical research, and general treatment of ME patients.

...But PACE is not all that some people are lambasting Wessely for, is it Bob?

Simon Wessely wasn't even an author of PACE, but I mentioned PACE because it is a scientific way to robustly refute Simon Wessely's cognitive-behavioural approach to CFS/ME.
I personally think the best approach to Simon Wessely is to just repeatedly, and persistently repeat the results of the PACE Trial.

The published results of the PACE Trial are (superficially, at least) quite similar to the 'Cochrane Review', as it is known. The Cochrane Review is a review of CBT research literature for CFS, which, like PACE, also has a headline response rate of 14% for subjective measures. Note that a 11% to 15% response rate (average = 13%) is the best result of the PACE Trial, based on their own questionable methodology, and subjective measures only. Objective measures indicated less success. So these studies do not support the cognitive-behavioural model of CFS. I haven't studied any other reviews yet, so I don't know if they are all similar.

Note to self:
White et al., have quoted another review, which I haven't looked at yet:
Cognitive Behavioral Therapy and Graded Exercise for Chronic Fatigue Syndrome: A Meta-Analysis
Bronwyn et al. 2011

Bob said:
...and that he will continue to desperately use the evidence against an entire patient population to support his case that CFS patients have a psychiatric illness, as has been done in the Lancet article that @Merry quoted above.
Can't agree.

I base my comments on the way that CFS/ME patients' objections to the cognitive-behavioural approach have been turned around and used to undermine patients with CFS/ME. We are told that we object to the cognitive-behavioural approach only because we have a prejudice against mental illness, and want to avoid the stigma associated with mental illness. It's very clever, and completely untrue. The strong scientific evidence that supports our view, and undermines their assertions, is carefully avoided.

The following Lancet quote is typical. It's not a Wessely quote this time, but it supports Wessely's message:
The Lancet said:
“For patients to dismiss this work because it is being done by psychiatrists, and to attack those who are trying to help, is perverse and reveals a long outdated suspicion about the reality of mental illness”, adds Blakemore.



I wonder is singling Wessely out allows others to get away with some very poor science. Isn't it Prof White who should be questioned for ignoring the PACE protocol and failing to publish results. Also I think we should talk of the institutions rather than the individuals. I assume that Queen Mary's is the sponsoring organisation for PACE and it is Queen Mary's who say that it is normal to ignore the published protocol for a trial in reponse to FoI requests. I wonder if this is a view that the vice chancelor would be willing to defend in public. Universities can be sensitive about their reputation and should be ensuring a high standard from their staff.
I very much agree. Queen Mary should be challenged.
 

user9876

Senior Member
Messages
4,556
I very much agree. Queen Mary should be challenged. It's a good idea to communicate with the vice chancelor about it.
Just to be clear I don't mean complaining about White to the vice chancelor. I mean questioning him about the FoI replies and whether it forms an official view of QMC that it it acceptable and normal to make significant changes to a trial protocol. Its a kind of "when did you stop beating your wife question". To agree would put QMC in an embarassing situation yet to disagree the follow up is what action will you take to ensure information in the original protocol is published.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Posting this again
this shows the typical reality of the kleptocracy in the UK
smug, smarmy, upper middle cass, professional f*ckwits who "circle the wagons" and make damn sure no peasants can break down the gates of Castle Bullshit!

the scientific right/wrong of Wakefield/MMR is not the issue, merely that such questions have sod all chance to overcome the entrenched self interest machine deluxe that is the emeshed web of nepotism that is the British State and system (and it's tied in well with the USA, Australia and Holland)

even if an individual is honest, soon the colossal pressure of conformity, to protect the group interest, pollutes anyone to the point they are uttelry corrupt and will support anything "for the ends justify the means"
same as with politics etc.
WakefieldWitchhunt.jpg


yes, Wessely is not the "big problem" but he has made himself , by his own choices and smug crassness, a "Moriarty" of the ME patients. His own fault. All he has to do is apologize unreservedly in public, agree for independant biosciences/statistics/ethics groups to check ALL his work, admit his earlier work/attitutude was uttelry wrong and unscientific, and donate a substantial amount to ME charities.
I'd much rather have a repentant sinner now, than the inevitable bloody inquiries etc 10 or 20 years from now. or worse, catastrophy: "New Herpes virus leaves millions struck down with ME, no cure no treatment, who's to blame?"

the real enemy though is the corrupt system that uses him for its own ends, that wants nothing more than quick "pass the buck fixes" no matter if they cause worse problems, and will hang him out to dry when the merde hits the fan and they need a scapegoat.
that's the way it works. many such similar things over the years. they find some person who says/does the right thing , that makes some issue go away NOW so the scumbags can get re-elected...and then when it blows up in their faces...they turn on him

Look at recent scandals, find a scapegoat and throw him to the mob, pay him to keep him shut up, of if he wont shut up, arrange a "bizarre gardening accident/tragic suicide, or death from unusual sexual misadventure, oh my goodness where did he get that ultrastrong/anthrax laced heroin?" :alien:
Note I am NOT syaing it's the UK security services who'd do that, not there "bag" at all, but when powerful/rich folk face exposure....bribes and death by autoerotica abound! :p
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The Lancet said:
In stark contrast to the beliefs of most patients with CFS and the scientific community, a small but vocal group of objectors believe that psychiatric therapies mock their illness as unreal or imaginary.

And as the PACE Trial demonstrated, we are correct in our assertions that CFS/ME is not a cognitive-behavioural disorder, or an anxiety-based illness.
And we object to CBT and GET being promoted as having a 60% response rate (MRC), when it was only a 13% response rate.
And we object to CBT and GET therapies being promoted in the Lancet as having a 30% 'recovery' rate, when no 'recovery' data has been published.

The Lancet article is, interestingly, contradictory, (it promotes a cognitive-behavioural angle, and a biomedical angle):
The Lancet said:
In stark contrast to the beliefs of most patients with CFS and the scientific community, a small but vocal group of objectors believe that psychiatric therapies mock their illness as unreal or imaginary.
The Lancet said:
As a neuroscientist, Blakemore emphasises that CFS is undoubtedly a disorder of the brain. “But some people make a fierce distinction between neurology and psychiatry, which is deeply offensive to people with mental health problems in general. CFS is probably a constellation of clinical conditions, like schizophrenia or dementia.”

On the one hand, they say that patients object to CBT and GET because the therapies "mock their illness as unreal or imaginary", but on the other hand they say that CFS is "undoubtedly a brain disorder" probably similar to "schizophrenia or dementia."

But the versions of CBT and GET (which we object to) used in the PACE Trial were designed to 'reverse' the illness. In other words, they were designed to actually 'treat' the illness, using cognitive-behavioural techniques only.

I am not aware of cognitive-behavioural techniques being used to actually 'reverse' the biomedical aspects of schizophrenia or dementia.
 

urbantravels

disjecta membra
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1,333
Location
Los Angeles, CA
I am not aware of cognitive-behavioural techniques being used to actually 'reverse' the biomedical aspects of schizophrenia or dementia.

Funny that schizophrenia should come up. I just saw this the other day: a post on the Neuroskeptic blog about a small, uncontrolled study of CBT used on unmedicated schizophrenia patients. The results are not convincing, largely because (Laws argues) of lousy study design, but they are spun by the authors as "preliminary evidence that CBT is an acceptable and effective treatment for people with psychosis who choose not to take antipsychotic medication." Which is not a very responsible suggestion to make on such questionable "evidence."
http://keithsneuroblog.blogspot.co.uk/2012/11/cbt-shes-lost-controls-again.html

And oh look, there's one of the study authors getting defensive in the comments! I definitely don't have enough brain juice right now to sort through all of that.
 

biophile

Places I'd rather be.
Messages
8,977
It would be interesting to see if the lancet or bmj would defend White's actions in ignoring the published protocol.

I think the Lancet have already defended it. Although Hooper's herculean effort in engaging with the Lancet was not perfect, his complaint contained many excellent points which have been independently verified by people on this forum, while the Lancet have supposedly considered and rejected these points as utterly groundless, unscientific, and ad hominem. Hooper had repeatedly mentioned the goalpost shifting, so therefore, the Lancet are aware of it and stand by it. Seems like the Lancet also stand by "normal range" overlapping with entry criteria, even after "endless rounds of peer review", and have no problem with the accompanying editorial falsely claiming this was a recovery.

The Lancet (February 2011) said:
Conflicts of interest: PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company).

If we patients have a COI merely for being patients and finding fault with the White approach, then surely White has a COI for overseeing a trial that had the potential to damage the career and reputation of himself and like-minded colleagues. Further, they were also testing a rival therapy which they despise; would it be OK for a drug company to do that and then making sweeping authoritative conclusions about the effectiveness of said rival drug, especially if the formula was wrong?
Richard Horton said:
This is why I think the criticisms about this study are a mirage, they obscure the fact that what the investigators did scrupulously was to look at chronic fatigue syndrome from an utterly impartial perspective.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Funny that schizophrenia should come up. I just saw this the other day: a post on the Neuroskeptic blog about a small, uncontrolled study of CBT used on unmedicated schizophrenia patients. The results are not convincing, largely because (Laws argues) of lousy study design, but they are spun by the authors as "preliminary evidence that CBT is an acceptable and effective treatment for people with psychosis who choose not to take antipsychotic medication." Which is not a very responsible suggestion to make on such questionable "evidence."
http://keithsneuroblog.blogspot.co.uk/2012/11/cbt-shes-lost-controls-again.html

And oh look, there's one of the study authors getting defensive in the comments! I definitely don't have enough brain juice right now to sort through all of that.


England: RCT CBT for Psychosis vs. drug therapy

http://forums.phoenixrising.me/inde...-rct-cbt-for-psychosis-vs-drug-therapy.20240/


Re: Wessely and co. I have always found it interesting that we never hear from any of their patients (especially Wessely's patients) who have found his interventions and care as inappropriate as his more vocal critics appear to suggest they are or should be.

I feel sure that if patients had come forward before now to declare his actual clinical techniques detrimental, we would have heard and seen these reports blasted around the internet by now.

To my knowledge, this hasn't happened. Ever. And I'm not referring to Proctor. To single an individual medical professional out is to me the wrong thing to do. It achieves nothing. As has been said, Wessely has never been referred to the GMC for example, it is his ideas and more to the point his quotes that raise people's hackles.

To keep lambasting him and what he has to say, has proven entirely pointless and counterproductive, but in life there's usually someone/something against whom to vent and blame I suppose - or even to fear.

As patients it is our experiences that will impact upon any intervention recommended be it a drug or a therapy or management strategy. If we were somehow able to 'beef-up' our anecdotal evidence with actual on-the-ground research (as recommended by NICE) that proved for example - CBT was perhaps only effective as a management strategy and not particularly for ME - or that CBT wasn't available to many people - or that even where it was available it wasn't being taken up by patients - or that patients were not finding it addressed their ability to return to work - etc. etc. then we might get somewhere.

What also concerns me is that if you take away CBT and GET (as management strategies i.e. overall strategies for coping that include both of these practices as and where appropriate) what is there to replace them?All we have aside from help with some of the symptoms are management strategies (call them what you will).

Or are people hoping that evidence-based research from the trenches would simply see these interventions removed? I mean what is it really that bothers people? It was always for me the way in which these things were sold outside of the NICE Guideline.

The simplistic media headlines and the mis-communication of the actual PACE results. But the extent to which some have slagged Wessely and co. off strongly suggests that it isn't all about CBT and GET.

There is something about what he has said, what he says, that people take very personally. Essentially, that you and I are mentally ill or that somehow we have control over our condition; that we are responsible for it and the implication being that we can recover from it by thinking ourselves better.

Personally, I have never refused to engage with shrinks and counsellors etc. They've never found anything more than co-morbid depression. Hell, anyone who denies that there isn't some aspect of living with this or any other long term chronic condition that doesn't lead to psychological trauma - is a liar or bloody lucky.

The thing that plagues this condition of ours is friggin' self-opinionated medics and scientists. Hot-damn. Scientists and doctors with quack and non-quack opinion abound. We attract them like fleas to rats.

Sifting through all the at times contradictory information with which we are bombarded is bloody hard, especially when you can't think straight and are so ill; but when it comes to interventions recommended by your GP or specialist(s) these tend I would suggest to be more carefully considered.

I think we are more likely to take up such recommendations or at least afford them greater consideration ourselves. My own approach in such circumstances has been to "suck it and see" for myself, and then go back and keep going back if it doesn't say what it says on the tin.

I very much doubt if even half the people who spout and condemn Wessely in the way that they have done - with vindictiveness and through use especially of incorrect 'evidence' - are actually associating him with what he has actually done.

'The Wessely School' is an oft-cited meme. Wessely has become known on the internet as being all that is wrong with ME. The fact that there is no cure - Wessely's fault. The fact that there is no clear evidence of causation - Wessely's fault. No better criteria - Wessely's fault. Etc. Etc. You know who I 'blame'? Those f*&$%@! 'biomedical' scientists!

Anyway, I must have seen several dozen doctors and consultants over the 15 years. And some of their opinions proved to be shit. Not worth anything - certainly not some of the fees I paid. But that was in respect of me and they could have helped others - assuming they're still in business of course and I'm not talking about 'alternative' practitioners here either but conventional specialists.

For the most part these eminent professionals (well some of them - more than my fair share I have to say) felt helpless. Those that were any good expressed this helplessness to me before sending me off down a route without appropriate warnings.

Wessely is a convenient outspoken bogey-man. And like all bogey-men the world over - the more people talk about him - the more power he is given. But the simple fact - I would suggest - that no former patient or patients have ever made their presence known suggests that perhaps he doesn't practice what he is so often accused of preaching.

Sorry. Couldn't sleep. Can you tell :whistle:
 

Min

Guest
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UK
Wessely is a convenient outspoken bogey-man. And like all bogey-men the world over - the more people talk about him - the more power he is given. But the simple fact - I would suggest - that no former patient or patients have ever made their presence known suggests that perhaps he doesn't practice what he is so often accused of preaching.

I understand he has written that his appointments with 'fatigue' patients last for two hours, which would perhaps conveniently rule out him ever seeing any but the mildest affected 'fatigue' patients who most probably do not have myalgic encephalomyelitis. Of course, the quarter of all M.E. patients who are severely affected and who cannot travel to appointments are deliberately ignored in the UK.
 
Messages
13,774
That Lancet piece is pretty funny. It would have been nice to see what references they would have used to support their various claims about patients and critics of Wessely.

the scientific right/wrong of Wakefield/MMR is not the issue, merely that such questions have sod all chance to overcome the entrenched self interest machine deluxe that is the emeshed web of nepotism that is the British State and system (and it's tied in well with the USA, Australia and Holland)

I disagree, and think that the right/wrong is very important. If Wakefield's results had been widely replicated, they would have been accepted, even if they went against the interests of many of those with power and authority. That's not to say that politics, power and money do not distort how science operates, especially in areas where the evidence is uncertain, but really compelling evidence can still overcome these distortions. If Wakefield's results had held up under blinded conditions it could not have been covered up.

Re: Wessely and co. I have always found it interesting that we never hear from any of their patients (especially Wessely's patients) who have found his interventions and care as inappropriate as his more vocal critics appear to suggest they are or should be.

I feel sure that if patients had come forward before now to declare his actual clinical techniques detrimental, we would have heard and seen these reports blasted around the internet by now.

To my knowledge, this hasn't happened. Ever. And I'm not referring to Proctor. To single an individual medical professional out is to me the wrong thing to do. It achieves nothing. As has been said, Wessely has never been referred to the GMC for example, it is his ideas and more to the point his quotes that raise people's hackles.

I've seen a couple posts from CFS patients saying that they were unhappy with the care they received from him, but don't find this that interesting either way. I've only seen one person say that they were helped by him. Given the emphasis that he places upon the doctor-patient relationship and the skill he seems to have in managing how he presents himself to others, I would not be at all surprised if the vast majority of the patients he saw came away feeling positive about him - many homoeopaths report the same thing. This doesn't seem that important to me. From most of what I've seen from others, and think myself, the majority of the concern about Wessely and his work is related to his promotion of a biopsychosocial approach to CFS and the pragmatic management of the cognitions of patients: the social impact of his work, rather than the impact he may have simply working in his clinic.

As patients it is our experiences that will impact upon any intervention recommended be it a drug or a therapy or management strategy. If we were somehow able to 'beef-up' our anecdotal evidence with actual on-the-ground research (as recommended by NICE) that proved for example - CBT was perhaps only effective as a management strategy and not particularly for ME - or that CBT wasn't available to many people - or that even where it was available it wasn't being taken up by patients - or that patients were not finding it addressed their ability to return to work - etc. etc. then we might get somewhere.



Who would be analysing the data? BACME? People whose careers depended upon funding for CBT/GET at CFS centres? That sounds worse than nothing. We've had an independent audit of Belgium clinics, which showed them to be pretty useless, but nothing changed. So long as those claiming to be 'experts' need to have a 'treatment' to justify their incomes, misleading claims are going to go on being made. Although I was quite uninformed about the details, and expected more rigorous outcome measures, I was somewhat supportive of the PACE trial, and thought it made sense to pool funding to do one big thorough study rather than lots of rubbish little ones that told us nothing. Now that I've seen how the results from PACE were spun, I do not think that more research in this area is needed. Certainly not if those whose careers have been built upon a biopsychosocial approach to CFS are involved in choosing how data should be presented.

There's a recent thread on what seems to be a new attempt to spin data, and avoid releasing results in the manner laid out in the trial's protocol here: http://forums.phoenixrising.me/inde...d-releasing-data-on-recovery-from-pace.20243/ Peter White presenting Freedom of Information requests as harassment is pretty entertaining.

What also concerns me is that if you take away CBT and GET (as management strategies i.e. overall strategies for coping that include both of these practices as and where appropriate) what is there to replace them?All we have aside from help with some of the symptoms are management strategies (call them what you will).

Or are people hoping that evidence-based research from the trenches would simply see these interventions removed? I mean what is it really that bothers people? It was always for me the way in which these things were sold outside of the NICE Guideline.

CBT and GET can be such amorphous things that we could imagine them to be almost anything. However, given the way that the NHS currently operates, and the dishonesty and spin which surrounds how these approaches are sold for CFS to doctors and to patients, I think that it would be best if they were completely removed, even if they were replaced with nothing. The more I've read of CFS research and how it is treated in the UK, the more that I think we need a complete reset. A period of stripping away all of the quackery before we try to build up something which might be helpful to patients. Without that, false claims will go on being spread, and many patients will, quite rightly, be unable to trust the claims being made by their doctors.

At the very least I think that NICE should acknowledge the serious problems that have occurred in the way the CBT/GET are promoted to patients, and make it clear that this is unacceptable. (To be fair to NICE, they did emphasise the need for honest and accurate information last time... but without condemnation of past problems, I think that they are likely to continue).

The simplistic media headlines and the mis-communication of the actual PACE results. But the extent to which some have slagged Wessely and co. off strongly suggests that it isn't all about CBT and GET.

There is something about what he has said, what he says, that people take very personally. Essentially, that you and I are mentally ill or that somehow we have control over our condition; that we are responsible for it and the implication being that we can recover from it by thinking ourselves better.

To some extent, I think that's right (although as I'm sure you're aware, quite a simplification). It is odious quackery to lump patients together under a CFS diagnosis and then reassure them, encourage them to believe that they can reverse their symptoms, etc, without having good evidence about what was causing their health problems, and the extent to which they had control over it. As a broad approach towards patients; whether it's part of CBT, GET, or anything else; for those in positions of authority to manage the cognitions of patients without good positive evidence of cognitive distortions, and when we have such a poor understanding as to what cognitions serve to accurately reflect reality, is shameful and immoral quackery; especially given the difficulty with and indifference towards gaining genuinely informed consent. The biopsychosocial approach to CFS was always likely to lead to patients feeling angry and mistreated - yet there now seems to be some attempt to blame the patients for this, while ignoring the problems with how patients were, and are, treated.

Also, I think that this tolerance for manipulation fed in to the culture which allowed so many false claims about PACE. To portray it as simply a matter of 'miscommunication' seems to downplay the serious moral concerns that there should be when data is misrepresented in this way. Misleading patients, doctors and societies about the efficacy of treatments is disgusting, and those responsible should be removed from any position which gives them authority over another.

I very much doubt if even half the people who spout and condemn Wessely in the way that they have done - with vindictiveness and through use especially of incorrect 'evidence' - are actually associating him with what he has actually done.

'The Wessely School' is an oft-cited meme. Wessely has become known on the internet as being all that is wrong with ME. The fact that there is no cure - Wessely's fault. The fact that there is no clear evidence of causation - Wessely's fault. No better criteria - Wessely's fault. Etc. Etc. You know who I 'blame'? Those f*&$%@! 'biomedical' scientists!

I'm sure that some people do blame Wessely for things that are not his fault, but I'm also sure that lots of people defend him wrongly too. I think that Wessely has had a harmful impact upon research in this area, but I'm also doubtful that we would have progressed much further had he not. Regardless, the uncertainty and lack of good evidence that surrounds CFS does not justify the approaches promoted by Wessely.

Anyway, I must have seen several dozen doctors and consultants over the 15 years. And some of their opinions proved to be shit. Not worth anything - certainly not some of the fees I paid. But that was in respect of me and they could have helped others - assuming they're still in business of course and I'm not talking about 'alternative' practitioners here either but conventional specialists.

For the most part these eminent professionals (well some of them - more than my fair share I have to say) felt helpless. Those that were any good expressed this helplessness to me before sending me off down a route without appropriate warnings.

Since attending a CFS centre about 6 years ago, I've barely seen anyone. And I doubt I will until really significant reforms have taken place, and those responsible for the problems that have enveloped CFS have been removed... or that unlikely miracle break-through occurs.

I do not have any problem accepting that doctors are often unable to help those with health problems, or that honest mistakes will be made, but that is quite different from having medical staff deliberately promote views of reality which they know are not supported by the evidence, but are instead just thought to be a pragmatically helpful way of managing patient's cognitions. I'm not willing to go on being managed by a system which tolerates and promotes such quackery. I do not think that I, or any other patient, deserve to be treated with such disdain.

Wessely is a convenient outspoken bogey-man. And like all bogey-men the world over - the more people talk about him - the more power he is given. But the simple fact - I would suggest - that no former patient or patients have ever made their presence known suggests that perhaps he doesn't practice what he is so often accused of preaching.

I'm sure that politically it would be more effective to completely ignore Wessely - but I also think that it's good to try to hold people accountable for their actions. People can be drawn in to a joyful condemnation of bad people, one that ignores the complexities that surround human actions and encourage a kind of mob-mentality, but that does not mean that those being condemned are not bad people who should be hated.

Sorry. Couldn't sleep. Can you tell :whistle:

Ouch... 7:16 is a late night! Hope you had a nice lie in.
 
Messages
646
Re: Wessely and co. I have always found it interesting that we never hear from any of their patients (especially Wessely's patients) who have found his interventions and care as inappropriate as his more vocal critics appear to suggest they are or should be.
This is a hugely important point. The practice of “Medicine” is a rule based process in which there is an inequality of participation – some people are simply ‘more equal than others’ . This may be unfair and it may warrant change but by the very nature of the system it is poorly responsive to external influence and the ‘most equal’ within the system have the greatest influence over the direction of any change.

The UK does have provision for the challenge of inadequate care and those provisions do lead to change and the identification of (at least some) bad or inadequate Health Care professionals (HCP). To target one particular HCP (or even a group of HCPs) where there is no evidence of complaint by patients on the basis of care received, produces an inevitable ‘group protective response’; which is exactly what the SAS sponsored prize awarded to Simon Wessely is about. For those within the system, so long as the rules have been obeyed – any attack (or perceived attack)on an individual becomes an attack on ‘all’.

There is of course attraction to ‘being an outsider’, and M.E/CFS patients as the outlaws of Sherwood forest waging a war of resistance against the evil Sheriff ( or is Guy of Gisbourne ?) is all very romantic – but realistically where we are, it can only play out as Robin Hood: Men in Tights with an even less satisfactory ending.

Without verifiable patient complaints regarding actual care delivered, targeting named Health Care professionals will only lose M.E/CFS advocacy, what limited credibility it has. That doesn’t mean that approaches to research, service delivery or interventions have to be accepted as unchallengeable – it simply means abandoning ad hominem based arguments and using clear and sustainable reasoning.

IVI
 

Firestormm

Senior Member
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Cornwall England

Well, again, I hope the quotes (taken from Hooper) are correct. That oft-cited one from Klimas is out of context and relates (from memory) to a question posed about the then meme of comparing HIV to CFS at the time of the XMRV furore. New York Times I think it was...

Esther, thanks. Have just wonken up. Will reply later. Good points :)
 
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646
People can be drawn in to a joyful condemnation of bad people, one that ignores the complexities that surround human actions and encourage a kind of mob-mentality, but that does not mean that those being condemned are not bad people who should be hated.
A bit primitive but sort of works so long as you have a unified (fascistic ?) community. But as long as you have other people who may identify with the ‘hated’, or who feel some other bond – familial, collegiate etc, then all you end up with is tribalism. And that’s a really crap place to be if you are on the outside of a tribe whose skills and support you need.

Some 1.4 million people are employed either directly or indirectly by the NHS, the issue of threats of violence and actual violence is a major concern for all of those employees VIOLENCE TOWARDS NHS STAFF . Few of those 1.4 million people, together with their friends and families would not accept Wessely’s report of threats to him at face value. In tribal terms, hating Wessely translates to hating all health workers, personally I think that is a massively dumb position to court, particularly if the only purpose is allowing an M.E/CFS ‘tribe’ to get its collective ‘rocks off’ by rhetorical stringing up of an imputed dictator/abuser/Quisling/traitor/heretic or whatever else permits the summary justice of the tribal mob. Hating is fine, but allowing ‘hate’ to become emblematic of an advocacy position is monumentally stupid, unless of course the object of the advocacy is holy war or the advancement of ethnic cleansing, Helotry or dictatorship – then it works quite well.

IVI
 

Enid

Senior Member
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3,309
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UK
It is difficult not to feel some degree of animosity (having escaped the "all in your minders" once) and then of course complete lack of trust sets in for the very people (GPs etc) whose limited tests (to them) reveal nothing and were frankly equally suspicious of real illness. It destroyed my trust in the whole of the "edifice" of medicine UK and thenceforth avoided, turning to the specialists and volume of understanding (and treatments) available on the web. It is inevitable one knows more about the condition than medicine UK. I did meet some notices about violence towards NHS staff in one inner city hospital and the embarassed response was it had to do with drunks admitted to A & E over the weekends.

In short I'm saying the very basic doctor patient relation has been broken and it has to do with the creep of psychiatric modelling into areas of medicine they do not understand resulting in inertia in learning and teaching of UK docs. The strange thing is that there are some awfully good specialists in various fields who share, keep up with and learn from global research - so why not UK medicine and ME.
 
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The experience of having ME is the veritable cauldron of anger. Full of frustration and disbelief..and it's frankly dehumanising at times.

Anger is intoxicating, but the Sheriffs of Nottingham are a little more Keiser Soze because they drop their limp and walk away before they ever get caught.

Where there are bad people are allowed to thrive, there is a desire for such people to exist. The face of desire is not desire itself. The best place for people like Wessely, Sharpe and White, is across a platform from researchers like Komaroff, Klimas etc, being contradicted, authoritatively and academically in broad daylight.

The Job of ME patients and advocates should then be to make the desire to repress the truth of their illness, undesirable. As insulting as it is to the pride of many, it may be that the time has arisen for a new advocacy group to be born that states in its creed that it will not tolerate threatening behaviour from its members, but, will campaign vehemently for open information on ME research (sending an arrow or two at that canard about legitimate FOI requests)?
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Ghandi/Nelson mandela method will NOT WORK in our society now, because the sons of bitches at the top know of such and have built up a vast web of "pass the parcel/pass the buck" so you cannot touch them
without a "nasty vicious enemy", you cannot win that way, it's like fighting a giant sponge :p

Our "leaders" have built a system so insulating and corrupt, to protect themselves while they rob us all blind, it's part of what's actually bringing everything down around their ears as well as ours.

only by catastrophy, whistleblowers with backers, and serious widespread social unrest that they cannot stiffle, do you change things.ie Poll Tax Riots did something but "Occupy" did not, and Occupy did nto work because the scumbags have been working on means ot subvert any social uprisings/naysayings because of the Poll Tax Riots (ie they learned they improved things so now they are unassailable..agents provocateurs even in peaceful middle of the road protest groups, for goodness sake, we have the bloody softly-softly Stazi ! Jeesh)

new Labour out, Tory/LibDems in, revolving door, much the same, it's JANUS
200px-Janus-Vatican.JPG

both bunches of vermin chasing the same post-government gravy train contracts with corporations, same political class without a clue idiot-idealogy-driven assholes,
"waiting for science" will see most us DEAD
"Waiting for Godot" ring a bell?
The wheels of justice grind exceedingly fine but yes exceedingly damn slow


that is the REAL ugly truth in life: you cannot deal rationally, kindly or via normal systems, with scumbags who OWN, control or coerce the systems! You're on a hiding to nothing from the beginning.
And NO this does not mean you use VIOLENCE (note how that plays out in the film), but it does mean "nicey nicey" simply will not work, they bastards have the legitimate avenues buttoned up.
You think they are damned stupid? that they lead their corrupt kelptocracy because they are street thug morons?
No, just a higher class of ratbag.
how did they get Capone in the end?
*TAX EVASION*
they got him by thinking a bit outside the box.
we need to find proof of serious wrongdoing, science won't do it, public appeals won't do it (we're not photogenic and all our sick media cares for is sex, slaughter, and once in a while "cute but doesn't trouble the audience".)
We need the force of law and an outraged public calling for heads to roll (again, not real heads, it's a metaphor, that kind of thing :p).
See recent issues on MPs fiddling expenses and now the huge extent of tax evasion by Starbucks, Amazon etc in the UK.

Wessely maybe entirely honest, he may believe all he says, but his manner sucks :p
And yes he's just the "tool" for what others want to hear and want to BE heard.
Psychological warfare. means to an end.