Crawley: How to deal with anti-science BRS2017

Orla

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Cinders66

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What a ridiculous thing to do to label those who dislike your version of science as therefore anti-science. If you asked any informed sick person with ME what they most want Sooooo bad more than winning the lottery, or meeting Mr Right or anything else, it's well funded, high quality biomedical research into the illness.
 
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Another factor is that it is very convenient for doctors given the responsibility of managing ME/CFS to be able to pretend that something is known about the disease and that there is a treatment. Especially when that treatment involves sending the patient off to a psychologist. And the psychologists like the work. Sadly, my old colleagues who deal with CFS and chronic pain are very happy indeed to endorse the BPS language. The main problem I think is that they are not that clear and so are threatened by the idea of having to think of something more intelligent and honest to say to patients.

As a parent of a child with ME with physiological symptoms I have had to put a legal ring fence around my happy but ill child to stop her being pushed into mental health services and to stop her being sent to a psychologist that she does not need. She is a very calm, sensible, ambitious child who wants to do everything her friends are doing. We have no mental health issues, she has glowing school reports and performs highly when well enough to attend. The bullying we have encountered by Drs and the complete ignoring of her physiological symptoms is because they are too lazy and disinterested to learn about this disease. What is happening with children with ME and their parents is scandalous in the U.K. You have hit the nail on the head. I have greater respect for a Dr who says I don't know.
 
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JaimeS

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The Lightning Process
I have always thought this sounded like a spell from Harry Potter, except probably that would be an insult to Rowling. Anyone want to PM me if they know anyplace around here that has an actual description of the Lightning Process? Please don't reply here, I don't want to derail the thread.

-J
 
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JaimeS

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We were assured that we should not blame ourselves or think we are imagining feelings of fatigue but that something has influenced us into negative thought patterns....We should reframe a passive statement into an active one such as “I am doing a bad day.” The main idea is for students to catch themselves when they make a negative statement mentally and try to reframe it as something they themselves are causing, or at least have a large hand in.

On the second day we were to write down what things went well or badly from the previous day and to notice any limiting beliefs we had.
This is what Crawley studies.

How is she invited anyplace to talk about anything?

Who gives her access to their children?

The final part was for us to close our eyes and bring up a memory of when we felt extremely happy, confident, strong or full of energy and try to imagine every detail of the memory; making it brighter, more vibrant, hearing what was going on at the time, and trying to remember the sensations of that moment. When the good feelings reached a peak we were to make an anchor with one of our hands, usually pressing the middle finger against the thumb.


I know that I often relate these folks to HP, but the intersection of UK politics plus handwaving / magical thinking seems to generate the parallel in and of itself.
 
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I am unclear what Esther Crawley was doing last a British Renal Society meeting.

She seems no to have noticed that the FOI request that did get through was found not to be vexatious, manifestly unjustified, inappropriate or whatever, but entirely reasonable. The information officer found the claims of anti-science to be unjustified. Moreover, the OMEGA petition seemed to get it right in that the application was turned down by the Wellcome. It was poorly thought through.

I may be slow on the uptake but this is now clear evidence that Dr Crawley is delusional about the quality of her science and the nature of her critics. She did not mention that if you do bad science you may get Emeritus Professors of Medicine pointing out how bad it is, as well as patients.

Who on earth is this Sridharan fellow? Has anyone pointed out to him (or BRS) that a hundred scientists have written to the Lancet saying she and her friends are talking nonsense?
Hi Dr Edwards and everyone here

I am this Sridharan fellow! I came across this thread as a result of replies I have been getting on twitter and hence, I thought I will clear some things up.

First of all, I am not employed by BRS to tweet nor do I know Dr Crawley. I have never heard of her before this morning. And certainly, I am not employed by her to tweet her session. You may have seen that I have tweeted other sessions as well from the conference and I have done this for many other meetings previously. 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 do not want to be a medium for it. If I had tweeted any of your talks and this happened to you, I would have done the same. 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. It is not related to ISN Social media task force as I was tweeting from my own account and not as ISN member. 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.

P.S. I am Dr Siva Sridharan and I am a nephrologist. I attended BRS conference just as a delegate like everyone else. I tweet some of the sessions I attend in the conference and I am the one who tweeted Dr Crawley's session.
 
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Orla

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There was a lot of discussion here years ago about the Lightening process. There was an article (now removed) where a lot of us posted information underneath (I am glad in a way that the article, which was very uncritical, is gone but there was a lot of good information in the comments that are now also gone.). But there was a thread about the article here which has some good information on LP: http://forums.phoenixrising.me/index.php?threads/article-an-md-on-the-lightning-process.3720/

I posted this at the time:

<Early on during the first session trainees are told that they must not say 'I have ME/CFS' - they are told they are 'doing ME/CFS'. I have no problem with this but remember this when watching videos and the people are asked on film "Do you have ME now?" People are expected to say 'No' - or they would be told they are being negative, something you are not allowed to be. "

"I would like to point out from our experience that trainees are only allowed to say positive things. So when the trainee tells the camera all the things they have done the day before, they are not allowed to say anything negative. For example someone may have walked half a mile, but they are stopped from saying how they may have struggled while doing this, or stopped for rests at every bench on the way>

So basically CBT on steroids ;)
 

dangermouse

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This is what Crawley studies.

How is she invited anyplace to talk about anything?

Who gives her access to their children?





I know that I often relate these folks to HP, but the intersection of UK politics plus handwaving / magical thinking seems to generate the parallel in and of itself.
How on earth has EC been awarded top job on the Mega Trial venture? For so many (obvious) reasons this is wrong.
 
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Who gives her access to their children?
The UK parents who find themselves falling down the CFS rabbit hole and search for the "expert" in the field. Then fight their way to get a referral, wait hopefully for months for someone to understand, start the program then 12 months later realize it doesn't work and no one on the team wants to admit it or answer your questions. If the answer is not covered by the script then you need to reduce your baseline.

Trouble is there is no alternative but to go it alone and then you have no protection from the school police unless you are lucky enough to find a brave doctor. Parents are an easy target in the early days when no one else is interested or believes your child is really ill. Dr Crawley understands and believes them.... then uses them for her research.
 

lilpink

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It's hard to quantify to what extent Wellcome reacted to the OMEGA petition in turning down MEGA's preliminary application. Crawley appears to be irritated by OMEGA (judging by the powerpoint screen grabs seen in this thread) so I think it would be reasonable to assume some influence at some level was brought to bear. I think Crawley's behaviour as seen in this thread opens up avenues in terms of questioning how best to deal with that astonishing, bizarre and wholly unprofessional behaviour. But in the meantime do please continue to support OMEGA... her appalling behaviour rather proves OMEGA's raison d'etre.
 
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Yep....
It's easy to look like a benevolent enchantress after several ogres have stood before you.

As @UKmum says parents are often desperate by the time they get to EC. They may have had to fight for a diagnosis, fight threatening attendance orders from school & had friends & families struggle with disbelief.

EC says I'm probably the first person who's believed you.

The very existence of a specialist service perpetuates the need for which it supposedly seeks to address. GPs don't take responsibility for the illness & many schools don't or can't believe how debilitating M.E can be precisely because the specialist service is giving the message that we can make a young person better in X amount of time & if they don't get better in that time than there are other factors at play.