Crawley: How to deal with anti-science BRS2017

[Snow Leopard]

Many of us are so anti-science that we donate money to some of the leading scientists in the world, just to cover our tracks.

Yes, we're so foxy, we donate to scientists who publish high quality studies regardless of whether they have positive results or not.

 

[Maggie21]

Yes, we're so foxy we donate to scientists who publish high quality studies regardless of whether they have positive results or not.

We can be quite picky though Snow Leopard. We do have a habit of only donating to those studies where appropriate criteria is used to ensure that it is studying the actual condition those pesky scientists claim they are studying.

I mean, fussy or what!

 

[Countrygirl]

(Sorry tbut I don't know how to post tweets)

......but Keith has posted this dated 29th April:

I've already made some worrying discoveries - a paper is in the offing supported by a charity, will be ready by Sept

I think we can guess the charity...................

does anyone know more?

 

[Barry53]

A somewhat worrying thought: How many other such presentations has EC done (and will she be doing) to unsuspecting medical audiences, who just take her at face value? If it had not been for @Nephrofan tweeting her slides, we would have been none the wiser - nor indeed any of her audience.

There really should be safeguards in place to prevent highly opinionated, skewed, and downright wrong/misleading presentations, in conferences where the speakers and their offerings are inevitably presumed to be factual and honestly informative.

 

[RogerBlack]

A somewhat worrying thought: How many other such presentations has EC done (and will she be doing) to unsuspecting medical audiences, who just take her at face value?

Her participation was announced beforehand, and the anti-science topic of the talk.

It might be worth keeping a watch for this sort of thing in the future, so organisations can be contacted in a useful manner first, and any messages over social media or other channels counteracted by peer reviewed refutations.

I do idly wonder if her FOIA compliance costs are higher than would be expected due to all the asking if something's vexatious.

 

[Robert 1973]

@Nephrofan Thank you for taking the time to listen, for replying to comments and for your apology.

It would be very helpful if you were able to clarify whether or not you actually received any abusive messages, or whether you misinterpreted legitimate criticism for abuse in the heat of the moment following Dr Crawley's presentation. As you may now appreciate, ME patients have frequently been accused of being abusive but very little evidence has ever been presented, and the suspicion is that many claims are false or exaggerated. If you were abused, I'm sure everyone here would condemn such behaviour. If you were not, I would be grateful if you could make that clear – perhaps by tweeting something to that effect. As we know to our cost, accusations of abuse have an unfortunate habit of sticking to the accused even when they are proven to be untrue.

 

[Manganus]

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.

(Sorry, Cheshire, I wrote a comment, where I mixed you up with @Kati . I removed it, but you may have been falsely alerted.)

The issue is exactly this: Is it an error or is it not? You, Cheshire, agree it's an error. Dr Nephrofan agrees it's an error. I agree it's an error.

It may be possible that we disagree why or how it's an error. But we do at least agree so far.

The problem is those who think it's not an error. Those who think that it may be a good practice to block critics from receiving tweets from scientific conferences. That's a road that we ought to avoid, as it would paint us as propagandists on the side of homeopaths, quacks and snake oils peddlers.

 

[Daisymay]

A somewhat worrying thought: How many other such presentations has EC done (and will she be doing) to unsuspecting medical audiences, who just take her at face value? If it had not been for @Nephrofan tweeting her slides, we would have been none the wiser - nor indeed any of her audience.

There really should be safeguards in place to prevent highly opinionated, skewed, and downright wrong/misleading presentations, in conferences where the speakers and their offerings are inevitably presumed to be factual and honestly informative.

I completely agree.

Unfortunately Wesselyites have been doing this literally for decades, misinforming doctors/researchers/media and government, portraying their scientifically invalid point of view as fact whilst demonising those who dare to follow the peer scientific evidence.

Even with something as obviously wrong as PACE they still get away with it. I'm not sure how safeguards can work when researchers seem to have so much power and influence and/or those in authority don't seem to care whether scientific principals are followed or not.

 

[Barry53]

@Nephrofan Thank you for taking the time to listen, for replying to comments and for your apology.

It would be very helpful if you were able to clarify whether or not you actually received any abusive messages, or whether you misinterpreted legitimate criticism for abuse in the heat of the moment following Dr Crawley's presentation. As you may now appreciate, ME patients have frequently been accused of being abusive but very little evidence has ever been presented, and the suspicion is that many claims are false or exaggerated. If you were abused, I'm sure everyone here would condemn such behaviour. If you were not, I would be grateful if you could make that clear – perhaps by tweeting something to that effect. As we know to our cost, accusations of abuse have an unfortunate habit of sticking to the accused even when they are proven to be untrue.

Also, if there really was - what any reasonable person would judge as - abuse directed towards you, and if it emanated from someone who is a member of PR, then we would wish that to (at least) be brought to the attention of the moderators here. If a PR member really has done such a thing, then it would be in all our best interests for it to not go unaddressed. I do very much hope that is not the case.

 

[Barry53]

Her participation was announced beforehand, and the anti-science topic of the talk.

It might be worth keeping a watch for this sort of thing in the future ...

Is there an easy way of searching for, or being alerted to, these sort of announcements do you, or anyone else, know?

 

[AndyPR]

Is there an easy way of searching for, or being alerted to, these sort of announcements do you, or anyone else, know?

It's possible to use Google to automatically receive new results from particular search terms - https://support.google.com/websearch/answer/4815696?hl=en, that's the closest option that I'm aware of.

 

[keenly]

How is Crawley getting away with this? Vile creature.

 

[keenly]

[QUOTE="Yogi, post: 842573, member: 1993"]EC is a fraud and charlatan and using psychological tricks. She thinks by using the term anti-science then everyone must assume she is on the side of science fighting against the anti-science.

Best way to deal with this is for everyone on twitter to use #BRS2017 and flood it with all the best pro-science PACE trial articles. i.e. Tuller, Virology, Centre for Welfare Reform , Sense about Science USA, Rehmeyer, all the JHP ones, NYT etc.

This is the strategy needed to deal with anti-science charlatans like EC.

MEMilitant is an expert on this

https://twitter.com/i/web/status/857783252173692928

https://twitter.com/i/web/status/857780480284012544

[/QUOTE]

Indeed.

 

[Forbin]

A somewhat worrying thought: How many other such presentations has EC done (and will she be doing) to unsuspecting medical audiences, who just take her at face value? If it had not been for @Nephrofan tweeting her slides, we would have been none the wiser - nor indeed any of her audience.

There really should be safeguards in place to prevent highly opinionated, skewed, and downright wrong/misleading presentations, in conferences where the speakers and their offerings are inevitably presumed to be factual and honestly informative.

I would think that one such safeguard would be debate. Has there ever been a serious, one-on-one debate between expert representatives of the two camps? If some medical group is going to invite E.C., why not also invite some credentialed person with an opposing view and let them make their case as well?

I'm not saying that this would resolve the issue, just that it would make the audience aware that there is a rational argument to be made by the other side.

 

[CFS_for_19_years]

Her participation was announced beforehand, and the anti-science topic of the talk.

It might be worth keeping a watch for this sort of thing in the future, so organisations can be contacted in a useful manner first, and any messages over social media or other channels counteracted by peer reviewed refutations.
.

Esther Crawley's participation at BRS was announced by the BRS Dec 2016 on twitter. @MeMilitant1 was the first to see it, and it had at least 20 replies:

https://twitter.com/i/web/status/809510786762731520

 

[CFS_for_19_years]

It's possible to use Google to automatically receive new results from particular search terms - https://support.google.com/websearch/answer/4815696?hl=en, that's the closest option that I'm aware of.

Some of the best search terms might be "esther crawley speaker programme 2017".

Does anyone want to volunteer for this?

For that matter, it might also be good to set up similar alerts for Wessely and Sharpe.

 

[Cinders66]

There's ongoing CBT interest in managing kidney disease patients. We aren't the only area of physical health they want.

 

[Solstice]

I completely agree.

Unfortunately Wesselyites have been doing this literally for decades, misinforming doctors/researchers/media and government, portraying their scientifically invalid point of view as fact whilst demonising those who dare to follow the peer scientific evidence.

Even with something as obviously wrong as PACE they still get away with it. I'm not sure how safeguards can work when researchers seem to have so much power and influence and/or those in authority don't seem to care whether scientific principals are followed or not.

Been wrecking my brain on how to counteract this. Especially since seeing @Nephrofan post here. He seems to be convinced, or should be convinced on reading further evidence about Crawley's views being wrong.

Maybe we could convince doctors one-by-one and keep them updated on new research afterwards? I know my doctor doesn't have a buttload of time on his hands, but I could make a small information packet for him about PACE and the harms of CBT/GET+a selection of the best research coming out lately and maybe afterwards follow up with new research as it emerges(Lipkin, Davis, Fluge/Mella stuff in particular). Maybe this could be done through some sort of mailing list? Just spitballing here.

 

[RogerBlack]

There's ongoing CBT interest in managing kidney disease patients. We aren't the only area of physical health they want.

As a general point, the form of illness-denying CBT promoted for CFS is so far from what 'real' CBT is, that any research on it is pretty much unrelated.

In principle, the argument could be made that CBT for CFS might help with repetitive draining unhelpful thoughts, and helping with compliance with energy envelope, where you know what you should be doing, but find it impossible to stop in the moment.

Same as with disease monitoring/compliance.

That of course does leave the general question about CBT working much at all.

 

[Ambrosia_angel]

Has anyone been able to get through to the BRS?

They really should apologise for this even if they decide not to give all of the details on how she ended up speaking there.