Because there is no point in unnecessarily making enemies of people who might be inclined to be neutral, when they have obtained a more complete picture of what they have stumbled into.
Crawley: How to deal with anti-science BRS2017
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Because there is no point in unnecessarily making enemies of people who might be inclined to be neutral, when they have obtained a more complete picture of what they have stumbled into.
Keith Geraghty
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this chap sat in the audience smiling lapping it up - tweeting happily away, not realising people do actually read tweets and people do actually have their own opinions - and while he was being inspired along with others by Crawley's attack on patients and other researchers - I was being appalled.
Do tell this chap to explain to me how my retweeting of his tweets was abusive in any way?
I think a bigger abuse was going on - one Dr (Crawley) tarnishing thousands of ME/CFS sufferers with a 'militant' brush and then her laughing as she instructed other renal doctors on how to side step freedom of information requests - by calling them vexatious, by saying they are too expensive, by saying you may publish in future.
I really feel a complaint needs to be lodged on this - and her position on the CMRC, I cant see how she can continue to hold that position and claim to represent ME/CFS science in the UK.
Do tell this chap to explain to me how my retweeting of his tweets was abusive in any way?
I think a bigger abuse was going on - one Dr (Crawley) tarnishing thousands of ME/CFS sufferers with a 'militant' brush and then her laughing as she instructed other renal doctors on how to side step freedom of information requests - by calling them vexatious, by saying they are too expensive, by saying you may publish in future.
I really feel a complaint needs to be lodged on this - and her position on the CMRC, I cant see how she can continue to hold that position and claim to represent ME/CFS science in the UK.
Ysabelle-S
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Thank you for taking the time to clarify why you were tweeting the conference. I did notice myself that you were tweeting on other conference topics throughout the day. With regard to the response to the tweets with Crawley's slides, you appear to have been caught in the crossfire. Sadly people like Esther Crawley have drawn a number of innocent bystanders in the medical profession into their appalling anti-science beliefs about ME. There are about a quarter of a million ME sufferers in the UK (assuming everyone has been correctly diagnosed of course), so this is a huge issue. Crawley's presentation was appalling, but sadly it's what we've come to expect from her.
Molly98
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Molly98
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It is appalling in every way and I wholeheartedly agree
What if you're both? Now that's a conundrum for 'science' isn't it?
Ysabelle-S
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Her presentation sounds sickening. The BRS need to make some sort of statement on what happened. Is this the future of medicine - defaming patients and promoting a model of science that is not transparent and therefore open to abuse? We know how that went with the PACE trial.
Countrygirl
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@Molly98
Brilliantly said!
Thank you for speaking on behalf of all of us. It must have flattened you to do this.
Thank you for being so generous with your 'energy'.
Brilliantly said!
Thank you for speaking on behalf of all of us. It must have flattened you to do this.
Thank you for being so generous with your 'energy'.
AndyPR
Senior Member
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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...
trishrhymes
Senior Member
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I sent @Nephrofan 3 replies to his tweets, including links to a David Tuller piece on Crawley's FITNET and to this thread mentioning @Jonathan Edwards posts.
I'm a bit clueless about Twitter and can't tell if I'm one of the people he's blocked. I did not abuse him in any way, just criticised Crawley for bad science. I have no idea whether he classes my tweets as abuse.
I didn't see any replies from others I'd call in any way abusive, but I only started following the conversation some hours after it started.
I'm a bit clueless about Twitter and can't tell if I'm one of the people he's blocked. I did not abuse him in any way, just criticised Crawley for bad science. I have no idea whether he classes my tweets as abuse.
I didn't see any replies from others I'd call in any way abusive, but I only started following the conversation some hours after it started.
I'm in two minds (don't tell the psychs ) about whether to give this chap (I thought he was "this fellow" - oh well) a break or not. So I'm just rambling without having made my mind up yet.
On the one hand the only correct response from any scientist sitting in the audience listening to Crawley's offensive crap would be to be appalled. Never mind the ME stuff, but just as a scientist, at least one person should have thought "hang on a minute, is she really telling us to hide our data and to treat any requests to share it or any questioning of our findings as vexatious - what about open data and how science is supposed to work?" And then perhaps to stand up and say "excuse me, but who are you and what the f*** are you talking about?" before everyone walking out (sorry, dreaming there).
Even if he chooses to look the other way because he doesn't have the time and inclination to give a toss about ME sufferers, he has a duty to his own kidney patients to find out what's going on, why EC was invited to speak, what it all means for his own field. Who are the BPS brigade, how have they treated other patient populations, and why are they now hanging around kidney patients? Will they be telling the NHS, the insurance companies and the government what they want to hear - ie that there's money to be saved here and no-one has to feel guilty about it because it's going to be the patients' fault?
So even if @sayintmyway has unwittingly found himself at a presentation from someone he's never heard of and got caught in the crossfire of a battle that isn't his, if he chooses to look the other way and be part of the deafening silence that allows Esther to @sayitherway then he's letting his patients down.
On the other hand ...
Oh never mind that, I think I've made my mind up after all. Time for him to man up. Which I thought was a prerequisite for going on twitter anyway - abuse indeed - he has no idea what abuse is. Let's hope his patients aren't about to find out because he didn't slam the door in Esther's face when he had the chance and was warned.
) about whether to give this chap (I thought he was "this fellow" - oh well) a break or not. So I'm just rambling without having made my mind up yet.On the one hand the only correct response from any scientist sitting in the audience listening to Crawley's offensive crap would be to be appalled. Never mind the ME stuff, but just as a scientist, at least one person should have thought "hang on a minute, is she really telling us to hide our data and to treat any requests to share it or any questioning of our findings as vexatious - what about open data and how science is supposed to work?" And then perhaps to stand up and say "excuse me, but who are you and what the f*** are you talking about?" before everyone walking out (sorry, dreaming there).
Even if he chooses to look the other way because he doesn't have the time and inclination to give a toss about ME sufferers, he has a duty to his own kidney patients to find out what's going on, why EC was invited to speak, what it all means for his own field. Who are the BPS brigade, how have they treated other patient populations, and why are they now hanging around kidney patients? Will they be telling the NHS, the insurance companies and the government what they want to hear - ie that there's money to be saved here and no-one has to feel guilty about it because it's going to be the patients' fault?
So even if @sayintmyway has unwittingly found himself at a presentation from someone he's never heard of and got caught in the crossfire of a battle that isn't his, if he chooses to look the other way and be part of the deafening silence that allows Esther to @sayitherway then he's letting his patients down.
On the other hand ...
Oh never mind that, I think I've made my mind up after all. Time for him to man up. Which I thought was a prerequisite for going on twitter anyway - abuse indeed
- he has no idea what abuse is. Let's hope his patients aren't about to find out because he didn't slam the door in Esther's face when he had the chance and was warned.Ysabelle-S
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I'm in two minds (don't tell the psychs
On the one hand the only correct response from any scientist sitting in the audience listening to Crawley's offensive crap would be to be appalled. Never mind the ME stuff, but just as a scientist, at least one person should have thought "hang on a minute, is she really telling us to hide our data and to treat any requests to share it or any questioning of our findings as vexatious - what about open data and how science is supposed to work?" And then perhaps to stand up and say "excuse me, but who are you and what the f*** are you talking about?" before everyone walking out (sorry, dreaming there).
Even if he chooses to look the other way because he doesn't have the time and inclination to give a toss about ME sufferers, he has a duty to his own kidney patients to find out what's going on, why EC was invited to speak, what it all means for his own field. Who are the BPS brigade, how have they treated other patient populations, and why are they now hanging around kidney patients? Will they be telling the NHS, the insurance companies and the government what they want to hear - ie that there's money to be saved here and no-one has to feel guilty about it because it's going to be the patients' fault?
So even if @sayintmyway has unwittingly found himself at a presentation from someone he's never heard of and got caught in the crossfire of a battle that isn't his, if he chooses to look the other way and be part of the deafening silence that allows Esther to @sayitherway then he's letting his patients down.
On the other hand ...
Oh never mind that, I think I've made my mind up after all. Time for him to man up. Which I thought was a prerequisite for going on twitter anyway - abuse indeed
Yes, there comes a point when people present at that conference have to analyse what Crawley was saying, how she portrayed a very ill patient group, where many patients are housebound and some cannot even speak. She is abusing us, defaming, and laughing as she does it. She is instructing other doctors and scientists on how to hide research data from patients (some of whom are scientists, statisticians or doctors themselves) so research cannot be fully held to account or subject to transparency. This is abuse of power - the patients are the ones who ultimately pay the price of bad research. What was being promoted at that conference were tactics to protect professional reputations, and it was all dressed up as a battle against anti-science. The anti-science in that room was Esther Crawley and everyone who agreed with her. Technically, it should have no place in the 21st century, but it perfectly fits in with the current political climate which appears to be sliding backwards. People have died from ME - this is something that is not getting out. The patients know because we know some of those who have died. Some of them used to post on this forum. Some deaths have made it to the newspapers, but god knows how many have gone ignored. This is not a minor scandal, or a theoretical argument, this is our lives, and our lives are being wrecked and destroyed by bad science.
Never having twittered, and being never likely to, and thus being wholly ignorant of the subject, I would suggest that it is probably impossible to simultaneously be sending "real time" tweets and applying one's full critical faculties to the content of what one is tweeting.
Perhaps some of our friends here will say that is only a problem a man would have. In his defence that would include this man. We should be grateful that he did such a thorough job. It seems unlikely that EC will share this emotion.
Perhaps some of our friends here will say that is only a problem a man would have. In his defence that would include this man. We should be grateful that he did such a thorough job. It seems unlikely that EC will share this emotion.
Bit late for that, isn't it?
The ISN gave Crawley an uncritical propaganda platform to, yet again, blatantly slander patients and her critics, indulge in some serious anti-science behaviour herself, and avoid accountability for her own culpability in this decades long tragedy.
That is not in any way the fault of patients or her critics. The ISN must take full responsibility for that serious error of judgment, however unwitting.
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.
Ysabelle-S
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He did a thorough job of posting the slides, for which we should be thankful. I agree listening, tweeting in real time, and analysing what is being said both in real time and on Twitter might be difficult. Keith Geraghty knows his subject, but this doctor appears to have wandered in without knowledge of ME. However I think it behooves those present to take the time to get to know this subject. And I think the BRS owe us an apology.
Well he was able to apply half his wits to it and declare her "inspirational".
He certainly wasn't doing it for our benefit, and as soon as he found out that it was, he took it down.
I do wonder whether the room was packed full of people who were already on the BPS train, who knows what communications / meetings had taken place in the run-up to the presentation. It may well have been organised by someone sympathetic to the BPS school and with an agenda.
Whilst trying to still give him the benefit of the doubt, I can't help noticing that Dr Siva Sridharan has been quick to adopt the Crawley definition of "abuse" and to respond in BPS style by blocking tweets and providing no evidence of the "abuse". That looks like he might have been a little too inspired.
Me too, but I must say I'm glad it's there. Otherwise this presentation would have happened in a closed room with everyone present being unaccountable and patients only finding out about it much further down the line. Much like it was in Wessely's day. Crawley really does need to keep up with the times.
Almost. But fortunately there are still a few words left, even after removing all the ones that are not allowed.Appalling, isn't it. Almost beyond words.
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I can only guess that EC was invited to speak at BRS2017 because of her involvement in research that uses exercise therapy to treat fatigue. This also seems to be gaining popularity in CKD too - and may well benefit patients.
Again, I can only presume that they are expecting some sort of backlash from patients against exercise therapy simply because it is exercise therapy. If so, that tells me that she/they totally miss the point about what is happening in ME/CFS. Exercise is not a panacea. It will undoubtedly help some people in some conditions, but it won't if you have a condition that it exacerbates. That seems obvious to me.
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?
Again, I can only presume that they are expecting some sort of backlash from patients against exercise therapy simply because it is exercise therapy. If so, that tells me that she/they totally miss the point about what is happening in ME/CFS. Exercise is not a panacea. It will undoubtedly help some people in some conditions, but it won't if you have a condition that it exacerbates. That seems obvious to me.
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?
I can't tell you because they are verboten. But a lot of them have four letters if that helps.What words are verboten?