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Crawley: How to deal with anti-science BRS2017

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
That would be an example of Schrödinger's patient, one who is both listened to and also ignored by the mainstream scientific community in this country... ;)
I know an ME patient who has had a kidney removed. She suffers from fatigue and other symptoms of course, and does everything she can to have these classified as consequences of her kidney surgery, because if they are classified as due to her ME it'll bugger up her disability pension.
 

Stewart

Senior Member
Messages
291
@Nephrofan - if you're still lurking around (and I suspect you're not)...

None of the tweets I posted carried any of my personal opinion - it was just a statement of what was happening there just like I have done for other sessions. To clarify, I am not a paediatrician and certainly do not know about CFS/ME as much as you people do. Hence, I refrain from commenting on which research is valid regarding ME.

As has already been observed upthread, this isn't true - at least one of your tweets carried a personal opinion that certainly read like an endorsement.

By replying to me and abusing me, nothing is going to happen.

Apart, it seems, from getting you to take down the offending tweets.

I don't know Dr Crawley and she is not in my network. By doing this, you are shooting the proverbial 'messenger'.

The proverbial 'messenger' who, in this instance was (apparently) unwittingly propagating her view that ME/CFS patients are 'anti-science' when nothing could be further from the truth.

None of my tweets endorsed her studies or her views.

As I've already said, this isn't true. But even it was, the issue is that you were - by your own admission - trying to ensure that her messages reached the widest possible audience. And given how controversial and offensive her messages obviously are to many people (including many scientists and researchers) you really shouldn't be surprised by the reaction you got.

I am sorry I had to block some of you guys only because they were either abusing me or trying to abuse Dr Crawley through my tweets.

If this is true you can explain why you blocked Keith Geraghty then? Maybe you can share his 'abusive' tweet with the rest of us?

I understand you have a lot of differences with her competency and research but I am not in any way endorsing it either.

Again - as I've already said - you certainly seemed to be endorsing it by tweeting the word 'Inspirational' alongside one of the images.

You may also noticed that I hadn't blocked some of the people who replied because they politely pointed me to Dr Edwards' blog to know the truth - which I am OK with. I will, if interested, will look at it.

Can you understand how offensive and enraging that offhand comment might be to many on this forum? It completely undermines everything else you've said. "I don't understand the issue, and I'm happy to unquestioningly disseminate the controversial views of a figure who is widely distrusted by the patient community. But when patients direct me towards articles written by fellow medical professionals which explain why this controversial figure's research is so problematic - yeah, not sure I'm that interested to be honest."

Going through this thread, I get a sense that you all are decent people trying to take a stand against what you think is wrong. I commend that.

Reading your post, I get a sense that you've blundered into a controversial issue that you don't understand and don't want to take the time to gain an understanding of, and now you're trying to extracate yourself and the ISN Social Media Task Force from it. I can't commend you for that, but I can sympatise (a bit) with your situation.

So, please stop abusing me - I was just tweeting a conference session which I attended. That's all there is to it.

Literally no-one on this thread has abused you, so I don't understand why you're asking *us* to stop. If you've received abuse on Twitter (and you've presented us with no evidence to prove that you have) shouldn't you take it up with the people who've actually abused you, rather than an internet forum full of people who weren't involved?

I have taken all the tweets down so that there is no further dissemination of the material that was presented by her through my account.

Thank you very much for doing that. Now that I *can* commend.

I am a neutral person in this issue and certainly not knowledgeable enough to support either side. I wish you luck in whatever your goals are. Thanks and I hope you all will leave me and ISN out of this issue.

Thank you very much for the good wishes. It's not my place to speak on behalf of everyone else on this forum, but I suspect that what we'd all appreciate a lot more than mere wishes of luck would be if you - and the wider membership of the ISN - took the time to educate yourself about the many serious problems with Dr Crawley's work instead of giving her a platform. Unfortunately from your reply it doesn't look like there's any serious prospect of that happening.
 
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2,125
Have any of the listeners even contemplated for a moment -- to what end?
Why would so many sick people be going to such lengths to stop (supposedly) helpful science into their illness?
And on the flip side........they are not informed about the research funding being supported by the same 'vexacious' people something EC conveniently sweeps away.

@Nephrofan now you can access this site please take the time to look at the real scientific research projects that members are actively supporting/helping to fund across the world. Research that Crawley and her associates continually dismiss, research that could have been happening a lot sooner.
(See Ron Davis The Open Medicine foundation, Invest in ME[IimE], Naviaux, Fluge and Mella)
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
To libel patients and advocates in the way she is doing is totally unacceptable, but I think it shows that she simply doesn't understand the problem. Is that fair? Or am I being too kind?
You're certainly being too kind to EC, but you may be making a fair point about BRS. Although whatever excuse they may have had, they now have a duty to learn more about Crawley and decide whether it's in the interests of their patients (or anyone on the planet) to give her such an uncritical platform.

All involved so far seem keen to avoid taking responsibility or switching their brains on. That's the kind interpretation - the other is that something deliberate is going on.
 
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2,158
I suspect EC touts herself around all the medical conferences offering her talk on anti-science abuse etc. She just loves playing the hero, and garnering plaudits and admiration from her uninformed and unsuspecting colleagues.

@Nephrofan , if you are still reading this thread, you will have seen that we are not criticising the fact that you tweeted the slides from Prof. Crawley's talk. You had no way of knowing at the time that she was not what she paints herself to be.

However, now that you have been alerted to the situation, I hope you will alert the organisation that runs the Conference to the fact that they have had their invitation to speak abused by someone who is anti- science, the very opposite of the message she pretends to convey.

You can see clues to this, as others here have already pointed out, in the fact that she was promoting secrecy and rejection of information requests and data sharing. This is an anti-science message.

If you do not feel able yourself to enter further into this debate, I hope you will be able at least to inform us of the best way of alerting your fellow BRS members to the problem with Prof. Crawley's talk, perhaps by inviting someone like @Jonathan Edwards or @Keith Geraghty to write a piece for your organisation's publication or website.
 

Solstice

Senior Member
Messages
641
C-e8MApXcAEmRZm.jpg




I don't know about you, but I find this offensive, and potentially libellous.

I worked very hard to gain my degree and was on course to be ..........................(huge shame!.......but one can be permitted a little foolishness in youth ;)) a psychologist............:oops::lol::aghhh::redface::redface:.........when ME struck.

I was not hanging round street corners for my next fix as suggested in EC's slide

I was never a criminal.

I did not live in a slum.

I did not indulge in bad relationships.

EC. I regard your public comments as offensive!:bang-head:

I eagerly await your apology.

I'm mostly just disappointed she missed an opportunity for an acronym. Hefrcs is nothing, she could've probably worded that differently. Juggle it around you do get the dutch word scherf which means shard. As in, the M.E. community is sharding on me.
 
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3,263
I'm always surprised at the absolutely boldness of people who are scientists who care so little for scientific truth over political sucking up.
Yea, I looked at some of the conference retweeters. It was like a commercial marketing campaign. All about promoting the conference and networking - or as they more sinisterly call it, "tightening the cluster". There didn't seem to be any interest in argument or discussion, or even careful reflection on the things they were being told.

I have no hope for medical training in the UK. This and other evidence suggests these medics don't even have a basic grasp of critical thinking. Maybe too much emphasis on just learning what you're told, rather than training the skills to evaluate research themselves?

I know not every programme can do everything, but this seems important, because a medical degree seems to be widely accepted as a sufficient qualification for conducting or disseminating research. So I think Universities need to make it live up to its public image.
 
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TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I'm mostly just disappointed she missed an opportunity for an acronym. Hefrcs is nothing, she could've probably worded that differently. Juggle it around you do get the dutch word scherf which means shard. As in, the M.E. community is sharding on me.
They always were crap at acronyms. With just a bit of juggling:

Substance abuse
Housing
Antisocial behaviour
Monetary pressures
Education
 

lilpink

Senior Member
Messages
988
Location
UK
I strongly suggest to you that the ISN does some robust – if belated – due diligence to find out the full story, and then put some hard questions to Crawley, and those who thought it a good idea to invite her along to your conference.

A formal public apology to patients and critics is something the ISN might also want to consider.

Yes!
 

Chrisb

Senior Member
Messages
1,051
Sort of Sancho Panza I guess.

I do not recall how Sancho Panza dealt with his master's propensity for tilting at windmills or what happened when the mists cleared and the delusion became apparent, but there may still be something to be learned from this quote from Wikipedia:

"In Don Quixote the eponymous protagonist consistently misinterprets his own, his adversaries', and his allies' actions and motives- regularly resulting in apparently unjustified violent actions and consequences. One way of interpreting Don Quixote's tilting at windmills could be as an allegory to promote critical, sceptical or satirical evaluation of either a hero's motives, rationales and actions or a nation's foreign policies."

How apposite.
 

RogerBlack

Senior Member
Messages
902
I have tweeted at several of the people that tweeted in response to the conference, along the lines 'please review the evidence' and giving links to peer reviewed research.
I truly hope nobody is spinning this as 'abuse'.

Personal attacks (outside perhaps calling someone a bit dim to not engage brain) are entirely unhelpful. Actual threats should be reported to the appropriate authorities.
 
Messages
9
Hi and thanks for clarifying your role in this. Do you know by any chance how Crawley was invited to this renal conference?

PS: Patients have legitimate concerns about her work and are using legitimate channels to point out problems. I think it would be good if the British Renal Society apologized for mistakenly giving her space to denigrate critics which include many patients but also researchers and doctors.

Here's also a blog post by Prof. James Coyne, clinical psychologist, that describes Crawley's MAGENTA and SMILE trials in very negative terms. In particular he refers to the intervention in the SMILE trial as a "quack treatment": http://blogs.plos.org/mindthebrain/...tigue-syndrome-study-issues-to-be-considered/

Hi

I have no idea how she was invited. As I said, I am just a delegate who registered for the conference just like many hundred others. I have no inside knowledge of how the conference was organised. I am not connected to BRS in any official way. And thanks for the links above for opposing views as to that presented in the conference.