Crawley: How to deal with anti-science BRS2017

[Woolie]

If she is confident of her interpretation of ME and the tone of both sides remains respectful, what reason could she have for refusing to engage with us?

Trouble is, we're all so furious right now.

Your debate idea with a single member is not bad. Or we could gather up a set of questions we want to ask beforehand, then ask her to come on and answer them. But then we would need to allow people a chance to ask for further details if questions are side-stepped and stuff.

 

[trishrhymes]

I would like Crawley to attend the Invest in ME conference. She might learn what ME is and why her approach is so wrong.

 

[Countrygirl]

Trouble is, we're all so furious right now.

Your debate idea with a single member is not bad. Or we could gather up a set of questions we want to ask beforehand, then ask her to come on and answer them. But then we would need to allow people a chance to ask for further details if questions are side-stepped and stuff.

Yes, I am very aware of the potential pitfalls as we are quite rightly very angry, which is why I suggested that one or maybe two members only participate in a debate with her. It could be disastrous otherwise, especially given the new developments.

With careful planning and management it could be possible and it would indicate to others that we are a reasonable and rational community.

I do also realise of course that she is probably not interested in our views or those of 'real' scientists and clinicians, and is merely empire building without regard to patient welfare. If this really is the case (and I strongly suspect that it is), then she would refuse to engage anyway. If she does, it would only confirm our view of her behaviour, but, at least, we would have presented the opportunity for dialogue.

 

[Countrygirl]

I would like her to attend the Invest in ME conference. She might learn what ME is and why her approach is so wrong.

The fact that she doesn't speaks volumes.

Does IiME send her an invite?

 

[Manganus]

Hi @Manganus please consider that live tweeting an event where you are also listening to the content of the presentation is not an easy feat, even for those who are healthy.

The way I see it, our friend the nephrologist wanted to share the event with twitter but also had to deal with very unhappy folks- us the patients- and we now know the context for why he did it.

With all respect, Kati, I think you are wrong.
Blocking (that is: making one's tweets invisible for) critics and criticism is a sign that ought to make warning bells sound loudly.
That's the way of unsofisticated propagandists, and quite astonishing when it comes to conferences for physicians or scientists.

 

[Cheshire]

With all respect, Kati, I think you are wrong.
Blocking (that is: making one's tweets invisible for) critics and criticism is a sign that ought to make warning bells sound loudly.
That's the way of unsofisticated propagandists, and quite astonishing when it comes to conferences for physicians or scientists.

It took me a few months to start understanding what was really at stake scientifically, politically and socially with ME given how the situation has been muddled. You can't expect someone with no knowledge, just after an Esther Crawley talk, to get everything right. He unblocked and apologised.

 

[Countrygirl]

'I could almost kiss Wessely.........'

(the author........not me )

https://www.facebook.com/notes/julie-ottway/its-worse-than-a-crime-its-a-blunder/1422887047755208/

A row has erupted between the ME community of patients and the Health professionals in the UK currently tasked with treating us. I use that phrase in it’s most relaxed way, as not much treatment occurs really, and none at all for the severely affected patients.

In fact ‘row’, is probably a comatose way of describing something more akin to a pitchfork rebellion of the peasants against the ruling classes. Well, we are Brits after all: the masters of understatement
It would appear though, that the arrogance of psychiatry has been on full-tilt this week, in the shape of Professor Sir Simon Wesseley and Professor Esther Crawley. Yes, I know what you’re thinking, ‘so what’s news about that.’ Well, I’m happy to report, quite a lot actually.

So let’s examine what’s taken place over the last few days.

Crawley managed to completely insult the entire ME patient community and David Tuller through a series of powerpoint slides shown in a talk which she gave to the Renal Society 2017 Conference recently. Word and images quickly circulated and all hell broke loose, I can tell you.

Basically, the slide show she gave during her talk was clear evidence of holding the ME patient community up to riddicule. I can’t be bothered to go into it here in more detail, but suffice to say I shared the same sense of abuse and anger as evidently the rest of the community experienced upon seeing the images. All I have to say about that is re-visit your professional standards and ethics Professor Crawley and while you’re at it, perhaps check out the UN Convention on the Protection of the Disabled. The human right that you’re looking for is freedom from abuse.

However, what really grabbed my attention, because after 30 years we are sadly conditioned to be abused, was what Wessely tweeted on Saturday 29th of April. Namely, an old Guardian news article titled ‘Linking Benefits to Treatment is unethical and probably illegal’ dated 29th July 2015. https://amp.theguardian.com/comment...

Then I remembered reading an article earlier in the day about a suicide which the coroner was linking to concern over loss of benefits together with mental health issues. http://www.mirror.co.uk/news/uk-new...

The theme of abuse was running right through my day, coming at me from all angles; or was I merely ‘cognitively biased’, I wondered? Having watched Dr Jay Watts (Alliance for Counselling and Psychotherapy) contribution to the Mental Health and Welfare Reform Conference on 5th November 2016 at the Livepool Hope University, https://youtu.be/5qoDobYlRNYvideo I could perhaps be forgiven for following that train of thought.

 

[Manganus]

It took me a few months to start understanding what was really at stake scientifically, politically and socially with ME given how the situation has been muddled. You can't expect someone with no knowledge, just after an Esther Crawley talk, to get everything right. He unblocked and apologised.

No, that's perfectly right: you can not expect someone to understand the quagmire of ME disputes.
But you can hope that people learn from their mistakes and stop blocking criticism in the context of scientific conferences. The ME community has nothing, what-so-ever, to gain from endorsing such blocking.

 

[Cheshire]

No, that's perfectly right: you can not expect someone to understand the quagmire of ME disputes.
But you can hope that people learn from their mistakes and stop blocking criticism in the context of scientific conferences. The ME community has nothing, what-so-ever, to gain from endorsing such blocking.

I do not endorse the blocking, nor do I endorse you calling someone "unsofisticated propagandist", when this person apologised. Blocking was not the right response, clearly an error, but that's it: an error, which lead to excuses. Keeping criticising this person is wrong, unfair and counter-productive. @Nephrofan engaged with our community, said he would read the documentation he was given, and he will make his own mind. That's not a "propagandist" attitude. The real problem here is not this doctor, but the appalling talk of Esther Crawley.

 

[Valentijn]

https://www.facebook.com/notes/julie-ottway/its-worse-than-a-crime-its-a-blunder/1422887047755208/

A Wessely quote from the article:

Linking benefits to treatment sounds suspiciously like a coercive measure to “incentivise” people who would not otherwise have had treatment to accept it. And if so, it is legally problematic. The people affected by this policy may turn up to receive the treatment in question and therefore seem to be consenting to it. But consent to treatment must be free from undue influence, otherwise it is legally meaningless.

So is he ready to fully and publicly retract this:

Sickness benefits....At present individual [CFS] cases should be treated on their merits, but it is reasonable to expect a patient to cooperate with treatment before being labelled as chronically disabled.
Wessely S, David A, Butler S, Chalder T. The Management of the Chronic Postviral Fatigue Syndrome. J Roy Coll General Practitioners 1989; 39: 26-29.

Or publically apologise for this:

As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive, or unchanging. Benefits can often make patients worse.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

Or this:

When asked to comment on benefits or insurance claims we support the patient as much as is possible, but do not support claims for permanent disability or medical retirement until all reasonable efforts at rehabilitation have been tried.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Or is it his belief that only ME patients, who disagree about ME being a mental disorder, deserve such medical abuse?

 

[TiredSam]

Whilst Wessely might sometimes appear to make inconsistent statements, it only takes the application of a bit of Wesselyian logic to bring clarity. In his Guardian article he was talking about mental health patients who are worthy of consideration and respect. In the papers quoted by @Valentijn he was talking about mental health patients who refuse to accept that they are mental health patients, which is an affront to his authority and therefore deserving of the full force of his wrath and whatever nastiness he can come up with.

Hope this helps.

 

[Barry53]

With all respect, Kati, I think you are wrong.
Blocking (that is: making one's tweets invisible for) critics and criticism is a sign that ought to make warning bells sound loudly.
That's the way of unsofisticated propagandists, and quite astonishing when it comes to conferences for physicians or scientists.

Blocking was wrong, but in my view understandable in these very specific circumstances, and just highlights how EC and Co so successfully fly below the critical-thinking radar of even the most intelligent, highly trained and decent people. The very fact that @Nephrofan has shown the gumption to engage with us here, and be prepared to try and understand, sets him apart from many.

The human brain cannot process everything from scratch all the time, else you would need a brain the size of a planet. So no matter who or what you are, some things get taken as a given. And if you walk into something stone cold - a cleverly crafted presentation by a Professor of Child Health - the odds are it will fly below your critical thinking radar. It's why so many people in the medical profession are being fooled by all this ... it's not that they are all nefarious charlatans - far far from it, the vast majority will be good decent professionals, simply unaware such subterfuges could be going on under their noses, their critical sensors dulled simply because they are human, and cleverly crafted propaganda convinces them they are doing things right.

It's what happens afterwards that counts, so let's not shoot ourselves in the foot.

 

[Snow Leopard]

Whilst Wessely might sometimes appear to make inconsistent statements, it only takes the application of a bit of Wesselyian logic to bring clarity. In his Guardian article he was talking about mental health patients who are worthy of consideration and respect. In the papers quoted by @Valentijn he was talking about mental health patients who refuse to accept that they are mental health patients, which is an affront to his authority...

The sad part is how much sense your explanation actually makes!

 

[Barry53]

Wesselyian logic

Sounds like a promising title for a new computer game. Could be the first in a whole new series - The Mind Games series.

 

[Yogi]

Perhaps EC should join us here for some advice, being as so many have been dealing with the same issue for so many years.

Perhaps Prof Jonathan would be prepared to invite her on here so we can have an open discussion where she and we can present our viewpoints?

If she is confident of her interpretation of ME and the tone of both sides remains respectful, what reason could she have for refusing to engage with us?

Maybe it could take the form of a debate between one patient rep. (Tom/Keith?) who could present our views and Prof Crawley?

Frank and open communication is always key to solving disputes, after all.

(Yes, I know and pigs might fly....................but the offer could be made and if she genuinely cares about patients she should be prepared to engage. )

I would like Crawley to attend the Invest in ME conference. She might learn what ME is and why her approach is so wrong.

The fact that she doesn't speaks volumes.

Does IiME send her an invite?

Crawley and the rest Wessely, White , Sharpe, all fully know what they are doing.

It is very obvious and clear that they are not interested in science or gaining biomedical knowledge. They are present in this issue as propagandists and for their own and their paymasters financial interests. They cannot even define the disease ME- using every widening definitions and deliberately muddying it with all sorts of mental issues and social issues.!!!

This could be cleared in a day but pwme and the bps have spent 30 years fighting.

I am still surprised that people give them benefit of doubt and think that these psychs are anything other than propagandists and lobbyists for VIs. Iime have offered numerous free tickets but they refuse. It would be good if they engage with us and go to IiMe( they are 'experts'in this disease and could go but chose not). That wil never ever happen. Period.

What do you think the CMRC is ? It is to derail and obstruct all the good work at IIME.

Finally to prove this point just look at the situation with @Nephrofan . On friday afternoon we thought each other had malicious intent and perceived each other as enemies. But within 24hr everything has been sorted. Sivakumar respects us and I respect him and we are both on the side of good honest science and medicine.

All done in 24hrs - and with Crawley and the rest of her gang we are still fighting for 30years.

I rest my case.

 

[TiredSam]

I rest my case.

I concur with my learned friend.

 

[Barry53]

I do not endorse the blocking, nor do I endorse you calling someone "unsofisticated propagandist", when this person apologised. Blocking was not the right response, clearly an error, but that's it: an error, which lead to excuses. Keeping criticising this person is wrong, unfair and counter-productive. @Nephrofan engaged with our community, said he would read the documentation he was given, and he will make his own mind. That's not a "propagandist" attitude. The real problem here is not this doctor, but the appalling talk of Esther Crawley.

Hear hear!

 

[Sean]

I rest my case.

I concur with my learned friend.

The jury unanimously agrees, and awards damages and all costs.

Case dismissed!

 

[Orla]

I do not endorse the blocking, nor do I endorse you calling someone "unsofisticated propagandist", when this person apologised. Blocking was not the right response, clearly an error, but that's it: an error, which lead to excuses. Keeping criticising this person is wrong, unfair and counter-productive. @Nephrofan engaged with our community, said he would read the documentation he was given, and he will make his own mind. That's not a "propagandist" attitude. The real problem here is not this doctor, but the appalling talk of Esther Crawley.

Yes I agree with this.

I think he probably panicked and blocked people in case he was somehow going to facilitate abuse and/or draw these "abusive" patients down on himself. At least this doctor had the curiosity to look into it a bit more, but a lot of doctors wouldn't and would just carry on, clear in their own minds about how they too had now experienced these crazy ME/CFS patients abuse.

It is interesting, but worrying, how normal behaviour by patients and people who listen to us gets re-interpreted as abuse, or at least as questionable behaviour, once the BPS propaganda machine has prepped a person to view patients a particular way.

It reminds me a bit of this https://en.wikipedia.org/wiki/Rosenhan_experiment

It is very interesting that Crawley did not make clear that her alleged "abusers" were most of the patient groups and other scientists and doctors.

I'd give Nephrofan some credit for at least engaging with us (though their first reply did come across badly to me as self-justification, their subsequent replies have been much more engaging).

 

[A.B.]

I am still surprised that people give them benefit of doubt and think that these psychs are anything other than propagandists and lobbyists for VIs. Iime have offered numerous free tickets but they refuse. It would be good if they engage with us and go to IiMe( they are 'experts'in this disease and could go but chose not). That wil never ever happen. Period.

What do you think the CMRC is ? It is to derail and obstruct all the good work at IIME.

Agree. For some reason, most likely vested interests, they will do anything to establish the view that this is a behavioural disorder. Scientific fraud included. There is a very clear trend to simply ignore biological abnormalities. They're very successful in controlling the narrative and making sure it constantly revolves around CBT/GET or "activists". Maybe they're just fanatical believers.