Crawley showed no evidence in her dismissive comments on the recovery re-analysis that she understood a fecking word of it.Is that fair? Or am I being too kind?
Which doesn't mean she isn't also, um, less than pure in her motives.
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Crawley showed no evidence in her dismissive comments on the recovery re-analysis that she understood a fecking word of it.Is that fair? Or am I being too kind?
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.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...
Shim? Cant? Fork?But a lot of them have four letters if that helps.
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.
By replying to me and abusing me, nothing is going to happen.
I don't know Dr Crawley and she is not in my network. By doing this, you are shooting the proverbial 'messenger'.
None of my tweets endorsed her studies or her views.
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.
I understand you have a lot of differences with her competency and research but I am not in any way endorsing it either.
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.
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.
So, please stop abusing me - I was just tweeting a conference session which I attended. That's all there is to it.
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.
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.
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.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?
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.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?
Fork is quite close.Shim? Cant? Fork?
Apparently not, though. Enthusiasitc retweets from conference attendees!After that extensive anti-patient tirade, even most newbies to the field would think she's a bit unhinged.
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.....................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!
I eagerly await your apology.
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'm always surprised at the absolutely boldness of people who are scientists who care so little for scientific truth over political sucking up.
That BPS excuse is a mighty powerful down-regulator of dissenting neurons.Enthusiasitc retweets from conference attendees!
A terrible affliction."tightening the cluster"
They always were crap at acronyms. With just a bit of juggling: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.
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.
Sort of Sancho Panza I guess.
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/