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

[ukxmrv]

I think we may be seeing the influence of insurance companies in the UK. Many of the psychiatric lobby have second jobs working for these companies.

There has to be a reason why psychiatrists and allied professionals find it worthwhile to spend their time on ME.

First of all their was the attention seeking and fame angle.
Then there was the chance to propogate their belief system
Insurance companies hired them as advisers so financial rewards followed
Books could be written and sold
There was a closed circle of like-minded people writing papers for journals, being peer-reviewed by their friends and then endlessly referenced by one another giving an impression that there was a concensus
Professional advancement followed and the financial rewards that came with that
The UK NHS rewarded them with salaries and a final pension scheme


For a long time it was a win/win situation for psychiatrists (and their followers) they could build a career in the UK, be safe from criticism as their friends controlled the MRC, the medical journals. NHS doctors protect one another and so did the other establishment powers.

I'm seeing a lot of parelells with the Jimmy Savile/sex abuse/MP sex abuse news being aired in the UK at the moment.

We have powerful figures who have ruined patients lives through the UK adopting CBT and GET to treat patients here. My health was ruined through a GET program early on.

These people are then protected by the larger system. Patients are denied a voice. Newspaper won't touch the story of what happened to individual patients like me. They won't touch the corruption around PACE.The public is encouraged to view us as hate figures by the polemic of militant, death threats etc.

 

[In Vitro Infidelium]

Hello IVI, I think i see the human condition differently. Why challenge a strategy that is an inevitable consequence ? It's rather like asking a starving man to stop stealing.

But is it a strategy ? I’m not denying the emotional experience of patients or that there is need for expression of those emotions – but I don’t think that amounts to, or can amount to, a ‘strategy’ that has any hope of achieving a specified end.

More problematically, emotionally driven ‘actions’ lack representational power, they are either the outpourings of the individual or the chorus of the mob. Empowering as such expressions are (Hey I’m sat here listening to RAM’s Township Rebellion ) they are not effective at engaging sympathetic responses except where they are cries for help from those deemed deserving of help by those in hearing distance. The mob will certainly gain cohesiveness from its collective expression of pain and frustration, and it may gain attention from those it would like to influence, but the instinctive response of the ‘exterior’ audience is repulsion and the wish to pacify – hence ‘bread and circuses’

I do not know what impact that tweet might have had, but more to the point, none of us do. But I do know this, advocacy, like those in a position to affect change, comes in many shapes and sizes.

We might not be able to predict absolutely, but we can make a reasoned deduction about what effects any action may have. This is the key to ‘advocacy’, as opposed to random acts of ‘protest’. And while advocacy may potentially consist of many different types of action, only a limited number of types of action will be effective for any given advocated position.

There were two distinct problems with the particular case. Firstly a lack of understanding of a process of advocacy that was already in progress – IiME was seeking to engage with the Chair of the UK’s Royal College of GPs, a position which confers potentially significant influence and whose support would be very welcome. To start ‘mixing it’ on twitter with RCPGP Chair is hardly likely to facilitate an optimal interaction between the RCPGP Chair and the IiME.

Secondly, there is a circular process involved in banging out emails and tweets that will never reach the intended recipients, because spam handlers simply shred the coms before they are seen by a human, or at best the only human to actually read them is some intern or lowly public servant whose reaction is ‘oh crap not another M.E loony – press standard reply button’. The process is one where the sender puts effort into communication but never sees any meaningful response/effect and then concludes (correctly) that they are not being listened to, and in consequence adopts an increasingly oppositional attitude in future communications which only reinforces the lack of responsiveness of the recipients.

IVI

 

[orion]

I think asking Wessely for proof that he's received threatening emails is unwise (and may even be a deliberate trap) because the emails he refers to are probably genuine.

It's simply a numbers game. This is a guy who has damaged the lives of literally millions of people around the world for more than 25 years. Even if only 0.001% of those people have been sufficiently angry at some point during that period to send him a threatening email, that still represents an awful lot of emails.

It's no big deal. Everyone in the public eye runs the risk of receiving crank emails from time to time, even those who have done absolutely nothing to offend anyone. It goes with the territory. The fact that Wessely deserves all the hostility directed towards him, makes the chances of him having received at least some threatening emails a near certainty.

I have no sympathy whatsoever for Wessely. He should stop being a crybaby. No one forces him to give highly provocative interviews to the media. He clearly loves the controversy he creates, and his penchant for self-publicity has no doubt helped his career, and bank balance considerably. If he can't stand the (relatively small) price of being in the spotlight, then he always has the option of genuinely retiring from the field of ME research, instead of merely pretending to do so.

 

[In Vitro Infidelium]

The points of concern often are complicated, and can be easily misunderstood, but shouldn't that mean that writers have a responsibility to do some research themselves? Maybe not: I've been reading 'Flat Earth News' by Nick Davies, and he seems pretty despairing of the British news media.

Yes - but who is to enforce the 'should' ? Any advocacy effort has to address the world as it is, not as we may want it to be. That means working in, with or around imperfect systems, unless one takes a purist stance and refuses to participate, or merely rages at the Empire's Walls with ill judged diatribes.

IVI

 

[Quilp]

But is it a strategy ? I’m not denying the emotional experience of patients or that there is need for expression of those emotions – but I don’t think that amounts to, or can amount to, a ‘strategy’ that has any hope of achieving a specified end.

More problematically, emotionally driven ‘actions’ lack representational power, they are either the outpourings of the individual or the chorus of the mob. Empowering as such expressions are (Hey I’m sat here listening to RAM’s Township Rebellion ) they are not effective at engaging sympathetic responses except where they are cries for help from those deemed deserving of help by those in hearing distance. The mob will certainly gain cohesiveness from its collective expression of pain and frustration, and it may gain attention from those it would like to influence, but the instinctive response of the ‘exterior’ audience is repulsion and the wish to pacify – hence ‘bread and circuses’

We might not be able to predict absolutely, but we can make a reasoned deduction about what effects any action may have. This is the key to ‘advocacy’, as opposed to random acts of ‘protest’. And while advocacy may potentially consist of many different types of action, only a limited number of types of action will be effective for any given advocated position.

There were two distinct problems with the particular case. Firstly a lack of understanding of a process of advocacy that was already in progress – IiME was seeking to engage with the Chair of the UK’s Royal College of GPs, a position which confers potentially significant influence and whose support would be very welcome. To start ‘mixing it’ on twitter with RCPGP Chair is hardly likely to facilitate an optimal interaction between the RCPGP Chair and the IiME.

Secondly, there is a circular process involved in banging out emails and tweets that will never reach the intended recipients, because spam handlers simply shred the coms before they are seen by a human, or at best the only human to actually read them is some intern or lowly public servant whose reaction is ‘oh crap not another M.E loony – press standard reply button’. The process is one where the sender puts effort into communication but never sees any meaningful response/effect and then concludes (correctly) that they are not being listened to, and in consequence adopts an increasingly oppositional attitude in future communications which only reinforces the lack of responsiveness of the recipients.

IVI

Hello IVI thanks for your considered response ( and the links )

Can you ''make a reasoned deduction about what effects any action may have'' ?
Those people on the other side of those actions ( to use the RCPGP ) come with motives, ideas, prejudices, personalities, pointing to a homologous perspective that none of us can be predict.
Allowing for an advocacy ''blueprint'' can we be sure that it will work ? If one can convince others that it will, perhaps the starving man ( at least temporarily ) might stop stealing bread.
But even if we were to start rebuilding ground zero today, for many it will be too late. Isn't that why the ''message'' falls on so many deaf ears ?
The tweet in question is of course an action, not a strategy, but what if that tweet was one of a hundred thousand ?
A million ? When does a strategy become a movement ? Right now, a movement is all that stands between us and more of the same for a generation to come.

Have you seen Hans Holbein's painting of Christ in the Tomb ? Dostoevsky, who was a deeply religious man at this time in his life ( after years in the Gulag, and being only minutes from execution ) was shaken to the core by the sight of Christ's rotting corpse. A man who's polemic on religion was loud enough to reach The Vatican itself, was brought to his knees by this one painting.
Our Hans Holbein is the movement that stands between us and change.
I confess to being a drop in the ocean in affecting such change, but the internet can bring those drops together in a way that has never before been achieved in human history.

Kind regards, Mark

 

[Stukindawski]

Some time ago, I was having a debate with someone on Twitter, about the nature of ME,
The other person pointed me towards the NICE guidelines and told me that there had to be an evidence base for psychiatric interventions, if NICE recommended them, therefore CFS is a psychiatric illness.
I was able to point out that the psychiatric evidence is questionable and weak, with, for example, only 14% of patients responding to treatment with CBT, in the Cochrane meta-analysis review, using subjective measures only. (And similar results with PACE using questionable methodology, and subjective measures only.)

The other person sort of accepted the weakness of the psychiatric evidence, but then challenged me to provide strong research evidence that ME is a biomedical disorder.
It was a fair challenge, and it made me think about what evidence I could present in order to back up my assertion that ME is a biomedical disorder.
There are a lot of biomedical papers, but many of them are weak, and some are contradictory, and some papers were dead-ends.
I was stuck, when it came to providing convincing and over-whelming biomedical evidence, as I didn't know which the strongest research studies are.

I just got finished watching this video by Julia Newton

...and I think it's quite an encouraging place to start. Professor Newton mentions a particular split in the way patients respond to exercise and I think muscle MRIs distinguish the difference. Each would require a different exercise regime for reconditioning, though Newton later states that her idea of reconditioning is probably more in line with Dr Klimas's slow approach with a focus on objective measures to avoid anaerobic exercise.

Professor Newton's work by her admission is looking at identifying and treating symptoms in me-cfs and I'm at least reasonably hopefully that through this work we might actually see some decent pharmacological interventions. Obviously this goes hand in hand with current auto-immune research which I would guess is more likely to uncover the underlying pathology.

Perhaps ever the point remains, we just need more research. What we have right now more than anything I think are compelling loose ends and perhaps it is those loose ends which make a more convincing arguement.

I think for my next blog, I'm going to design, as a layman, with as little hubris as possible, what a valuable GET trial might look like.

 

[Sean]

I have no sympathy whatsoever for Wessely. He should stop being a crybaby. No one forces him to give highly provocative interviews to the media. He clearly loves the controversy he creates, and his penchant for self-publicity...

His narcissistic whining is pathetic and contemptible. The gutless spiv wouldn't last two weeks with the crap the average patient has to endure.

 

[Bob]

The Independent.
ME: bitterest row yet in a long saga
SANCHEZ MANNING
SUNDAY 25 NOVEMBER 2012
http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

 

[MishMash]

The tenor of the article did not seem to support Wessley. This speaks to the effectiveness of your truth campaign.

If it seems obnoxious: keep doing it. It's the only reason ME patients have half a chance in the UK.

Take a page from the gays, when the felt AIDS was being ignored. Crude, ballsy, in your face. There is not such thing as bad publicity.

 

[Firestormm]

The Independent.
ME: bitterest row yet in a long saga
SANCHEZ MANNING
SUNDAY 25 NOVEMBER 2012
http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

Thanks Bob.

But Professor Wessely, head of psychological medicine at King's College London's Institute of Psychiatry, said: "I have published several hundred papers on this over the last 20 years. These have been published in world-class journals such as the BMJ and The Lancet, subject to rigorous peer review. I have never said that CFS is all in the mind. I do not believe that, and have never written that. I have said repeatedly the exact opposite. I have published many papers on possible infectious triggers to the illness."

Not sure the content of this piece equates to the headline. Feel sure though that the comments will replicate much of what has been said on this thread as word spreads.

Not too sure what this comment relates to - presumably 'John' is Maddox? Bit weird:

Sir Ralph Kohn FRS of the Kohn Foundation, which contributed to the prize said: "This is such a well-deserved recognition of John's outstanding scientific work for many years and we are privileged to be associated with this initiative."

Don't hear a great deal from Weir these days, I wonder why he thinks '5 years'? Probably no more than speculation that this will be the time necessary to come up with some answers?

Dr William Weir, a retired consultant physician who says ME is caused by a chronic viral infection, called the decision "almost satirical". "If the scientific data is properly examined it will be seen that Professor Wessely's doctrine is wrong and it will be proved to be wrong in about five years' time," he said.

 

[Purple]

Don't hear a great deal from Weir these days, I wonder why he thinks '5 years'? Probably no more than speculation that this will be the time necessary to come up with some answers?

I cannot possibly guess what people think but could it be referring the amount of time more robust Rituximab trials would take?

 

[Firestormm]

I cannot possibly guess what people think but could it be referring the amount of time more robust Rituximab trials would take?

I don't believe he can be thinking of anything specific there Purple. I took it as hope that in 5 years medical science will have come up with some better answers than therapy alone.

 

[orion]

I think the concern right now is that, various interactions with the 'usual suspects' from the BPS/psychosomatic lobby, is that they all tend to play out in their favour. They can choose who to respond to, and they cherry pick the more careless lines out of the patient community and reproduce them in papers and articles.

Antagonism is paying off for them (whether you believe it is on purpose or, merely a result of an opinion on ME/CFS that is completely divergent from the experience of the illness and established Scientific observations). The AIDS community had to become Scientifically literate to gain success, and I think it is the Science of ME/CFS that must be challenged.

I agree with your first paragraph. And that's why I believe the softly softly approach of constructive engagement advocated by IVI is never going to work on its own. Such an approach can only be effective when you're dealing with opponents who are prepared to be intellectually honest and engage with you in good faith. If all we had to do was win the argument using facts and logic then this phoney debate would have ended decades ago.

However, I disagree with your second point. Yes of course we should continue challenging the science, but on its own that won't be enough. As MishMash has already pointed out, AIDS activists achieved their aims mostly by behaving in a highly confrontational and provocative way, and we should not be afraid to do the same.

Actions such as FOI requests, complaints to the GMC, judicial reviews, etc. might appear futile in the short term. After all, the authorities appear to hold most of the cards, and they will win most of the battles. But their victories come at a significant cost, both financial and psychological. And that's the key point. What these actions are doing is applying continuous pressure. And whilst the pressure we can apply as individuals might not be that great, there are huge numbers of us, and if we all do our bit, then the cumulative effect starts to become very significant.

We are mostly dealing with a vast uncaring, unresponsive bureaucratic machine which is neither for nor against us, and bureaucrats tend to follow the course of least resistance. If the ongoing cost of opposing us is greater than the cost of meeting our (relatively modest) demands, then eventually we'll achieve our aims.

 

[Stukindawski]

Actions such as FOI requests, complaints to the GMC, judicial reviews, etc. might appear futile in the short term. After all, the authorities appear to hold most of the cards, and they will win most of the battles. But their victories come at a significant cost, both financial and psychological. And that's the key point. What these actions are doing is applying continuous pressure. And whilst the pressure we can apply as individuals might not be that great, there are huge numbers of us, and if we all do our bit, then the cumulative effect starts to become very significant.

We are mostly dealing with a vast uncaring, unresponsive bureaucratic machine which is neither for nor against us, and bureaucrats tend to follow the course of least resistance. If the ongoing cost of opposing us is greater than the cost of meeting our (relatively modest) demands, then eventually we'll achieve our aims.

I'm completely in favour of FOI requests, most of which I've seen are actually farming for information that is beneficial to patients and researchers alike. The fact that such actions have been chosen for condemnation in the recent SMC articles is probably some testament to both their efficacy and importance. Especially regarding PACE, the more data that surfaces, the worse it looks. I regard FOI requests as legitimate, if we have a right to information, then it should be out in the open. As simple as that. Those who have nothing to hide have nothing to fear after all. That's an ideology that goes way beyond ME/CFS for me as well (though personal privacy is another matter). Of course sometimes where we shine the light brightest casts the biggest shadow, which is something to be careful of.

I can't fault the pragmatism of your last paragraph. The independent article is certainly an interesting development in this regard, although I wait with baited breath for the inevitable SMC response. The article relies heavily on the titled individuals supporting it. Will more speak out, that's the question. If SW and pals were exposed (Sharpe, White, Chalder et al) it may behove the government or other bodies to pledge some money to ME research in a move of PR.

Anyway, I'll be floating what you've said in my noggin' for a day or two and I'll see if anyone else adds to it

 

[Seven7]

I just got finished watching this video by Julia Newton
.

Can I have the original Link pls? to the Julia Newton presentation?

 

[Stukindawski]

Can I have the original Link pls? to the Julia Newton presentation?

Video links seem to auto-embed on this forum. I originally got it from Tom Kindlon on twitter (who incidentally, had an interesting discussion with Clare Gerada this evening on there)

add http:// to the front of "t.co/bAFufl4p"

 

[Bob]

Julia Newton video:
vimeo.com/53729624

 

[Heike]

Because I`m still nearly speechless I did this:
http://www.flickr.com/photos/nockel/8224508825/

 

[In Vitro Infidelium]

Hello IVI thanks for your considered response ( and the links )
Can you ''make a reasoned deduction about what effects any action may have'' ?
Those people on the other side of those actions ( to use the RCPGP ) come with motives, ideas, prejudices, personalities, pointing to a homologous perspective that none of us can be predict.
Allowing for an advocacy ''blueprint'' can we be sure that it will work ? If one can convince others that it will, perhaps the starving man ( at least temporarily ) might stop stealing bread.

Advocacy is by nature a ‘prospective’ process – one can never be certain of the outcome, but one can look at the vast amount of past and current practice to form a view of what is likely or unlikely to work in a given circumstance.
In the case of the RCPGP – the key issue was that an organisation (which a lot of posters on these very forums appear to hold in some regard) was already in the process of engaging with the representative of the RCPGP. In that context writing insultingly to/about the RCPGP Chair could only worsen the perspective of the RCPGP toward M.E/CFS issues. So we don’t just have the problem of what “motives, ideas, prejudices, personalities” an organisation ‘comes with’, we have the problem of how those “motives, ideas, prejudices, personalities” may be excited negatively toward ‘our’ perspective by ‘our’ actions.

In terms of convincing people that one advocacy direction is more effective than another, that’s not something I’m optimistic about being able to achieve or have even really considered viable. I take the analysis that defines politics (but actually applies to all inter human activity), as “the motivation of bias” – the meaning being that one can’t get people to shift 180 degrees, but one may be able to encourage them someway in a desired direction. My arguments are much more about getting M.E/CFS affected people (patients and carers) to think more expansively about the advocacy problem. To not just look at the ‘pit we’re in’, but to look at how other organisations across a range of cultures achieve influence for a positive end. And to embrace the idea of a process that has to endure over time. I know only a percentage of readers will accept the validity of these ideas (and even then may not agree they are appropriate) – so I’m not trying persuade anyone of anything, other than about how to look at the problem and consider what effects are actually possible to achieve from any given action.

But even if we were to start rebuilding ground zero today, for many it will be too late. Isn't that why the ''message'' falls on so many deaf ears ?

I’m not particularly comfortable ascribing motivation to others. I’m one of those for ‘who it is too late’ in the sense that I’m going to hit pensionable age before any ‘cure’ is found and already two thirds of my adult life has been ‘lost to’ illness. The problem of ‘it’s too late’ is that it encourages either ill considered urgency or unwarranted resignation - success takes as long as it takes, short cuts are rarely available. If I thought shouting at people or spamming millions of emails would have a positive effect, then I’d recommend those actions. Desperation is usually obvious and frequently unattractive – it isn’t the position of strength that some people seem to think it is

The tweet in question is of course an action, not a strategy, but what if that tweet was one of a hundred thousand ? A million ? When does a strategy become a movement ?

To which I would ask when a does a mob become a movement ? History is punctuated by the depredations of numerous ultimately unsuccessful mobs, for whom, even where there was just cause, their actions never coalesced into something meaningful. Movements need heroes/heroines whose actions are frequently autocratic and may in the end actually not represent the ambitionsof the grass roots on whose shoulders they have ridden. IMO health advocacy needs to be deomonstrably representational to be effective.

Right now, a movement is all that stands between us and more of the same for a generation to come.

That suggests the ‘problem’ is amenable to social change. I understand the argument, but I don’t see the potential for extensive social change which improves the perception of M.E/CFS, without a prior incremental change in scientific input. The only way out of the public support/research funding circularity IMO is a gradualist approach which goes for ratcheting up advocacy and science by turns, over time.

I really do not think that ‘now’ is the same as the past – medical science has advance profoundly in the last twenty years in ways that wholly change how M.E/CFS can be researched. In my view it is now much more a matter of M.E/CFS affected people seeking to engage positively with researchers, administrators, politicians and clinicians in a way that brings the new opportunities for research to bear on the M.E/CFS problem.

Have you seen Hans Holbein's painting of Christ in the Tomb ? Dostoevsky, who was a deeply religious man at this time in his life ( after years in the Gulag, and being only minutes from execution ) was shaken to the core by the sight of Christ's rotting corpse. A man who's polemic on religion was loud enough to reach The Vatican itself, was brought to his knees by this one painting.
Our Hans Holbein is the movement that stands between us and change.
I confess to being a drop in the ocean in affecting such change, but the internet can bring those drops together in a way that has never before been achieved in human history.

I’m afraid I see the problem (at least in terms of process) as more one of street lights and drains than bringing down the Vatican. Boosting annual maintenance budgets, improving designs, introducing low energy use systems - produces safer and healthier neighbourhoods -not so much in the way of cultural pardigm shifts though. And way less sexy, though if that was the motivation I guess I'd go for Caravaggio as emblem creator - more threat, less Memento mori.

IVI

 

[EllenGB]

I'd personally be careful about emailing Ellen G. My feeling is that she may be partly be referring to the abuse she received and the court case on that.

My comment is not intended as a slight against Ellen. Just that people need to be aware that she has been through some abuse and took police action against someone who was involved with ME politics.

Ellen has ME herself

It was 11 years abuse and the CPS took me as the case to take one of the gang f four to court. I shall never be a witness again. You have to really harass me for me to go to the police as they tend not to do much. Please don't make me appear to be unreasonable. I'm still being hounded. Can't think why.