Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

I went there and gave it the vote it deserves. Not up to making a comment, too busy gagging at seeing this shameless BS again...

 

Attaching the automatic transcript of the video for those who would like to keep a record of it.

It will have no formatting or paragraph breaks, so be warned.

 

Here's my transcript, though it's from the unofficial video so times might be a bit off compared to the official YouTube version:

Slide: Book cover of "We Landed by Moonlight" by Hugh Verity (0-35 seconds)
My grandfather was a war hero, and he flew planes that crossed into France, and on secret air missions to pick up spies and resistance fighters. Because they were secret he needed to land his plane by moonlight, sometimes lit by torches in fields in the middle of nowhere.

He gave up a scholarship to Oxford, and what would have presumably been a glittering career to do this. And when I was a child I'd ask him "Why?", and he would say "Because it's the right thing to do." Because he wanted to protect his children, his grandchildren, you and me. And whilst I understood it was right, I thought it must have been a difficult decision for him.

When I was a child, I didn't want to be brave like him. And even though my childhood was loving and mostly happy, I was often forced to do very terrifying things, or face rejection by my father. For example, he took us swimming in a typhoon when I was 11, and I was swept out to sea. And I remember very clearly being on the bottom of the sea floor and looking up what felt like miles to the sky, wondering if I would survive, and wondering what my life would be like.

Slide: Girl in bed (1:30-2:40)
And as a grownup I've had to reconcile that and I've had to forgive, and I think it's probably a good thing that I don't scare easily. But if I could, I would take away those experiences of my childhood because I really believe that children shouldn't be forced to be brave. This is Sarah, she's 14. She loves school, she loves hockey, she loves her friends, she loves all that life can give her. But she hasn't been able to go to school for several years. She hasn't played sport for years either. She hardly sees her friends. Her concentration and memory is so poor that she can hardly read. She's in almost constant pain. She has almost daily headaches, sore throats, muscle aches, and pains. She has fatigue but fatigue is a word that doesn't describe her experience. Her fatigue is pervasive, it makes her feel like she can't move her limbs. Sometimes it's so bad she can't get out of bed.

She has chronic fatigue syndrome or ME, and illness that is completely devestating to children and their families. Parents usually have to give up or reduce work. It has a big impact on society. Children can't go to school, they can't get their education, they can't socialize normally. But we know very little about it. It affects 1 in a hundred children, and we really desperately need more research to understand the biology and treatment. We're making progress. 10 years ago people said to me that it doesn't exist in primary school children. We now know that it does, and we know much more about the symptoms that they had. And that's really important because that means that they can now get a diagnosis and get treatment.

We know some about it. We know for example that (kind of ticks and jumps?) genetically heritable, that means it runs in families. And interestingly it's much more heritable in children, children seem to be more genetically vulnerable. Which explains why they get their first, second, or third infection, compared to adults. And we know that infection is a terribly important trigger, and what's important about infection is not the particular bug that's important, what's important is the severity of the infection, how much of a hit do you actually get.

Slide: ME/CFS worldwide funding compared to other neurological disorders (3:50-4:50)
We're beginning to understand much more about how the brain works, so the concentration and memory problems, we can do imaging scans in children, and we can understand more about how they actually think and function and why they have this thing called brain fog. We understand more about the (?) changes. But the truth is that we really, really have so much more that we need to understand, and so much more that we need to explore. And one of the really big problems of chronic fatigue syndrome is the lack of research funding. You can see here on the left-hand side, how little research funding researchers into chronic fatigue syndrome get. And when you compare it to ataxia telangiectasia which is the column just next to it, chronic fatigue syndrome is 200 times more common, but receives half the funding. It's just not good enough, for this important disabling condition.

One of the problems with research in this area is that it's very complicated. So whilst all patients have this thing caused post-exertional malaise, which means that symptoms of pain and fatigue get worse after exertion, there are different groups of patients that have different clusters of symptoms. And these clusters of symptoms probably represent different underlying biological pathways. And that's very important for two reasons. First of all it helps us understand why some patients respond to treatment and other patients don't. And secondly it means that research needs to use really large sample sizes of patients, where we understand and measure a lot of their symptoms. And it needs researchers working together with expertise in different biological pathways and different experimental techniques. And that's absolutely the right thing to do, and we are making progress in both the UK and the USA.

But the problem is that that's going to take time. Research takes time. Research is iterative, it builds on each other and we're a long way off from developing completely new treatments for this condition. And the children that come to my clinic, they want treatment, and they want treatment now. They can't wait 10 or 15 years for a new medicine. Treatment for children with chronic fatigue syndrome is much more effective than for adults. We don't have a tablet, so we use natural methods. We change ... support children changing their sleep. If you change your sleep, you change the internal body clock, and that changes the way that your body produces hormones (?).

We also help children to change their physical activity or exercise, and contrary to what you might read, the really important and tricky thing is to reduce exercise (?) particularly for the start, and then help them (do more?) ever day until they can get back to doing the things that they want to do. And if we do that, we can increase the child's chances of recovery from less than 10% to more than 60% at 6 months. A 6 fold increase, much better than adults. This is good news for some children, but I don't think it's good enough. I don't think that it's good enough that 40% of teenagers are still unwell after 6 months. And we need better treatments. We need treatments that work, we need treatments that work for all children. We need children that work for children at home so they don't have to travel when they're really sick.

So how do we do research on treatments? Well there's two ways I think that you can do it. The first way (?) to other illness, and say well in that illness this particular treatment worked on similar symptoms, so we can try that for chronic fatigue syndrome. Or you can listen to what children and their parents tell you. When children and parents tell you that something has worked and (?), I think what you must do tests, trials to see if that treatment works. Because if it does work, we need to tell other children about it. And if it doesn't work, (?) it's not gonna work. So either way, if people are trying stuff, we must test it. And I think that we can do that.

Slide: girl in bed (8:25-9:05)
I feel really optomistic. My vision is that in a few years time, "Oh, where's Sarah?" In a few years time I'll be able to say to Sarah, when she comes to clinic, "I know what you have, but I also know how to get it better. Actually I have to tell you the truth, this isn't Sarah, and it's not even a picture of a patient. I couldn't put a picture of a patient up today because I was really worried about them being attacked, like I am attacked.

Slide: threat letter mockup "You evil bastards... we're going to cut your balls off. Stay out of this... time is running out for you all. Pray to god for forgiveness." (9:05-9:40)
It is the nature of doing research in chronic fatigue syndrome. It is the research environment. Medical students are told not to go into this area. Researchers are told not to do research. Researchers who do research, leave. This is an email that I got a few years ago. It was used on the front cover of the Sunday Times, to discuss the research environment for chronic fatigue syndrome. I still laugh at the idea that someone was going to cut my balls off. (laughter from audience). Does make you wonder.

But most of it isn't very funny. The things I particularly hate, actually the thing I hate the most for me, is the cyberstalking. I hate being stalked. I also hate the defamation. But the thing I really hate, is the impact this has on the children that see me, the children that come to my clinic. Children suffer because clinicians don't have the research evidence to know what to do in this condition. They suffer because there's so few people working in the area, and they have to travel a long way. They suffer because researchers like me spend so much time dealing with investigations and threats that we can't do the research that we need to do. They suffer because there's so much false news out there, false information, it's hard to know what the truth is. But they suffer in particular because researchers won't do treatment trials in this condition.

I did a trial a few years ago, in fact I do trials still, I did a trial, I finished a trial a few years ago. I did a trial a few years ago because children and parents came to me and told me about an intervention, a treatment that they thought was helpful. And other children and parents came to me and they said "Does this treatment work?" and I didn't know what the answer was. So we did the right thing, we did a trial to be a fair test, trials to be fair tests of treatments. And the children and parents, all the time we were doing it, were desperate to know the results, and wanted to help us with this trial. But a few people tried to stop us. A few people and a few organizations tried very hard to stop the trial. They reported me to every institution, they campaigned against the trial. We finished the trial, and interestingly, well maybe I'm surprised (?), the children who had come to me, they were right. This treatment helped some people, not everybody, but it helped some children. Children got better faster with it. We were published a few weeks ago. This is good news. It's not the end of the story, we need to do more research, but it's good news for children that have something else that might be helpful. But not good news. Not good news for those who try to stop us.

I talked to a professor last year actually, in America. He made a vaccine that saved hundreds of thousands of babies lives. Really amazing. Imagine doing something like that, fantastic. And he then started realizing that people were telling vulnerable mothers not to have this vaccine and they were saying things about the vaccine that weren't true. And he spoke out against it, and he said what the truth was, and he spoke out agains what they were doing. And he received personalized specific death threats against him and against his own children. And I said to him, I said, "You could do anything, why do you stay in this area?" He's really smart. And he said "I stay in this area because it's the right thing to do." He said, "I walk down the corridor and every time I see a needless death, I have to do something about it, you can't have anymore needless deaths. It's the right thing to do."

Slide: Photo of girl in bed: (13:20-14:20)
When I was a child, I didn't have a choice about what happened to me. Children with chronic fatigue syndrome or ME, they don't have a choice either. But now I'm a grownup, I do have a choice, and I choose to do the right thing. I choose to stay doing research despite what happens to me. I dot the research because children deserve, with chronic fatigue syndrome, deserve better. The children that come to see me in clinic deserve better treatments. The children that don't get a diagnosis deserve help. And it's not okay for children to suffer for two years before they know what's going on with them, that's not okay. You all have a choice, all this, all of you who know someone with chronic fatigue syndrome or ME. You have a choice about whether you love and support them. You also have a choice about whether we stand together and argue for more research in this important area.

We need to disrupt views of this illness. We do need to cast away the prejudices, the prejudices about what people think this illness is, because the truth is we know so little about it. We need to say "Enough is enough." We are going to support those doing research. And we're going to say to those who try and stop us, "We want research into treatment and into biology." And to say to the funders, "More research into this important condition." And we need to do that because those with chronic fatigue syndrome, particularly children with chronic fatigue syndrome, don't have a voice. They're too ill, so we need to be their voice.

Slide: Photo of girl in bed with referral info to Bath "Chronic Fatigue (ME)" service for children (15:35-end)
It's not going to be easy, changing what happens to people with chronic fatigue syndrome. Important things never are. But I believe, like my grandfather, we should do what is right, not what is easy. Thank you. (Applause)

 

[Applause]
Thanks. I want to link to it so have copied it into this message:

my grandfather was a war hero he flew planes across into France and on secret missions to pick up spies and resistance fighters because they were secret he needed to land his plane by moonlight sometimes lit by torches in fields in the middle of nowhere he gave up a scholarship to Oxford and what would presumably have been a glittering career to do this and when I was a child I'd asked him why and he would say because it was the right thing to do because he wanted to protect his children his grandchildren you and me and whilst I understood it was right I I I thought it must have been a difficult decision for him when I was a child I didn't want to be brave like him but although my childhood was loving and mostly happy I was often forced to do very terrifying things or faced rejection by my father for example he took me swimming in a typhoon when I was 11 and I was swept out to sea and I remember very clearly being on the bottom of the sea floor looking up what felt like miles to the sky wondering if I would survive and wondering what my life would be like and as a grownup I've had to reconcile that and I've had to forgive and I think it's probably a good thing that I don't scare easily but if I could I would take away those experiences of my childhood because I really believe that children shouldn't be forced to be brave this is Sarah she's 14 she loves school she lost hockey she loves her friends she loves all that life could give her but she hasn't been out to go to school for several years she hasn't played sport for years either she hardly sees her friends her concentration and memory so poor she can hardly read she is in almost constant pain she has almost daily headaches sore throats muscle aches and pains she has fatigue but fatigue as a word doesn't describe her experience her fatigue is pervasive it makes her feel like she can't move her limbs sometimes it's so bad she can't get out of bed she has chronic fatigue syndrome or ma an illness that is completely devastating to children and their families parents usually have to give up or reduce work it has a big impact on society children can't go to school they can't get their education they can't socialize normal normally but we know very little about it it affects one in a hundred children and we really desperately need more research to understand the biology and treatment we're making progress ten years ago people said to me that it didn't exist in primary school children we now know that it does and we know much more about the symptoms that they had and that's really important because that means that they can now get a diagnosis and can get treatment we know some about it we know for example that kind of tick syndrome is genetically heritable that means it runs in families and interestingly it's much more heritable and children children seem to be more genetically vulnerable which explains why they get it on their first second or third infection compared to adults and we know that infections are terribly important trigger and what's important about infection is it's not the particular bug that's important what's important is its the severity of the infection how much of a hit do you actually get we're beginning to understand much more about how the brain works so the concentration of memory problems we can do imaging scans in children and we can understand more about how they actually think and function and why they have this thing called brain fog we understand more about the hormones and some of the biological changes but the truth is that we really have so much more that we need to understand and so much more that we need to explore and one of the really big problems is chronic fatigue syndrome is the lack of research funding you can see here on the left hand side how little research funding research into chronic fatigue syndrome gets and when you compare it to a taxi teal inject Asia which is the column just next to it chronic fatigue syndrome is 200 times more common but receives half the funding it's just not good enough for this important disabling condition one of the problems with research in this area is that it's very complicated so whilst all patients have this thing called post exertional malaise which means the symptoms pain and fatigue get worse after exertion there are different groups of patients that have different clusters of symptoms and these clusters of symptoms probably represent different underlying biological pathways and that's very important for two reasons first of all it helps us understand why some patients respond to treatment and other patients don't and secondly it means that research need to use really large sample sizes of patients where we understand and measure a lot of their symptoms and it needs researchers working together with expertise and different biological pathways and different experimental techniques and that's absolutely the right thing to do and we are making progress in both the UK and the USA but the problem is that that's going to take time research takes time research is iterative it builds on each other and we're a long way off from developing completely new treatments for this condition and the children that come to my clinic they want treatment and they want treatment now they can't wait ten or fifteen years for a new medicine treatment for children with chronic fatigue syndromes is much more effective than for adults we don't have a tablet so we use natural methods we'd support children changing their sleep if you change your sleep change the internal body clock and that changes the way your body produces hormones particularly from the adrenal gland we also help children change their physical activity or exercise and contrary to what you might read the really important and tricky thing with this is to reduce exercise and physical activity particularly at the start and then help children do small amounts every day and so they can get back to doing the things that they want to do and if we do that we can increase a child's chance of recovery from less than 10 percent to more than 60% at six months six-fold increase March better than adults as freely good news for some children but I don't think it's good enough I don't think it is good enough that forty percent of teenagers are still unwell after six months and we need better treatment we need treatments that work we need treatments that work for all children we need treatments that work for children at home so they don't have to travel when they're really sick so how do we do research on treatments well there are two ways I think that you can do it so first of all you can look at other illnesses and you can say well in that illness this particular treatment worked for similar symptoms so we're going to try that in chronic fatigue syndrome or you can listen to what children and parents tell you and children and parents tell you that something has worked and have lots of them tell you the same thing I think that we must do tests trials to see if that treatment works because if it does work we need to tell other children about it and if it doesn't work we need to tell people not to have it because it's not going to work so either way people are trying stuff we must test it and I think if we can do that I feel really optimistic my vision is that in a few years time we'll be able to say to Sarah when she comes to clinic I know what you have but I also know how to get it better actually I to tell you the truth this isn't Sarah and it's not even a picture of a patient I couldn't put a picture of a patient up today because I was really worried about them being attacked like I am attacked it is the nature of doing research in chronic fatigue syndrome it is the research environment medical students are told not to go into this area researchers are told not to do research researchers who do research leave this is an email that I got a few years ago it was used on the front cover The Sunday Times to discuss the research environment for chronic fatigue syndrome I still laugh at the idea that someone was going to cut my balls off doesn't make you wonder but most of it isn't very funny the things I particularly hate actually the thing I hate the most for me is the cyberstalking I hate being stopped I also hate the defamation but the thing I really hate is the impact this has on the children that see me the children that come to my clinic children suffer because clinicians don't have the research evidence to know what to do with this condition they suffer because there's so few people working in the area they have to travel a long way they suffer because researchers like me spend so much time dealing with investigations and threats that we can't do the research that we need to do they suffer because there's so much false news out there false information it's hard to know what the truth is but they suffer in particular because researchers won't do treatment trials in this condition I did a trial a few years ago because children and parents came to me and told me about an intervention a treatment that they thought was helpful and other children and parents came to me and they said does this treatment work I didn't know what the answer was so we did the right thing we did a trial to do a fair test trials do fair tests of treatment and children and parents all the time we were doing it were desperate to know the results and wanted to help us with this trial but a few people tried to stop us a few people and a few organizations tried very hard to stop the trial they reported me to every institution they campaigned against the trial we finished the trial and interestingly well maybe unsurprisingly the children that had come to me they were right Streetman helped some people not everybody but it helps some children the children got better faster with it we were published a few weeks ago this is good news it's not the end of a story we need to do more research but it's good news for children to have something else that might be helpful but not good news not good news for those that try to stop us I talked to a professor of last year actually in America and he made a vaccine that say has saved hundreds of thousands of babies lives really amazing I mean imagine doing something like that fantastic and he started realizing that people were telling vulnerable mothers not to have this vaccine and they were saying things about the vaccine that weren't true and he spoke out against it and he said what the truth was and he spoke out against what they were doing and he received personalized specific death threats against him and against his own children and I said to him I said you could do anything you could do anything why do you stay in this area he's really smart and he said I stay in this area because it is the right thing to do he said I walk down the corridor and every time I see a needless death I have to do something about it we can't have any more needless deaths it's the right thing to do when I was a child I didn't have a choice about what happened to me children with chronic fatigue syndrome or any they don't have a choice either but now I'm a grown-up I do have a choice and I choose to do the right thing I choose to stay doing research despite what happens to me I do the research because children deserve with chronic fatigue syndrome deserve better the children that come to see me in clinic deserve better treatments the children that don't get a diagnosis deserve help and it's not okay for children to suffer for two years before they know what's going on with them that's not okay you all have a choice almost all of you will know someone with chronic fatigue syndrome or me you have a choice about whether you love and support them you also have a choice about whether we stand together and argue for more research in this important area we need to disrupt views of this illness and we do need to cast away the prejudices prejudices of what people think this illness is because the truth is we know so little about it we need to say enough is enough we are going to support those doing research and we're going to say to those who try and stop us we want research into treatment and into biology going to say to the funders more research for this important condition and we need to do that because those with chronic fatigue syndrome particularly children with a chronic fatigue syndrome don't have a voice they're too ill so we need to be their voice it's not going to be easy changing what happens for people with chronic fatigue syndrome important things never are but I believe like my grandfather we should do what is right not what is easy thank you you

 

Now:

 

Excellent job @Valentijn

 

https://twitter.com/user/status/943564413604388864

 

Is it any wonder she is so convincing to those who don't know what's going on? And note how she seeks to hang her hat on the biological peg.

 

Would we have a case claiming "Hateful or abusive content" against patients?

Skip TEDx and complain straight to YouTube/Google.

 

Heroic work!

The royal 'we' was doing a lot of heavy lifting in that speech.

I think the best thing to do would be to complain to the parent group of TED about the content breaking their own rules, and how the talk could be bad PR for them.

After all, if the words TED and complaints from ME patients become linked, it will start to show up in search results.

 

You're a superstar @Valentijn

 

I think it's best to be cautious with this stuff, at least for now. Personally, I think it would be best to start by asking questions about what evidence there is to support the claims made in the video, rather than making demands. We want to encourage people to investigate the problem. The priority should be getting to the truth, and it could be counter-productive to do things that might like like an attempt to censor (or 'cyber-bully' or whatever).

It's so easy for outsiders to view justified anger as harassment or abuse.

 

@Esther12 I see your point. But I find much of what Crawley says dangerously close to the line of hate speech against a disabled group.

Also, how can YouTube/Google get to the truth unless we tell them?

 

Crawley seems more interested in inciting disdain of people because they're critical of her work, rather than because they're disabled... it just so happens that it's disabled people who are most harmed by the problems with her work! From some of the nasty stuff still available on youtube, I think their standards are pretty loose anyway.

 

I notice she has also escalated to "cyberstalked". Sigh.

 

OMG - people are reading her papers, watching her talks, and then complaining about when she misrepresents the evidence... imagine if we treated politicians like this!

 

Phil Parker is impressed with the video:

https://twitter.com/user/status/943513423924604930


Standing up for Science... shoulder to should with magical Phil.

 

We want to argue the merits because we are right but people don't respond to science or common sense (current events for example) so we should change our tactics, start with science and keep going.
She is advocating something that claims it can cure cancer by telling patients to believe they don't have cancer. Is that ethical or even pass the laugh test? If not how is this going to cure a suspected autoimmune disease? Its also supposed to cure MS, is that any more believable?
Anyone who wants to steal this and put it where it can't be deleted or as a talking point is most welcome to do so

 

I haven't decided whether to report Crawley's TEDx video. I'm going to sleep on it. But as a YouTube subscriber, it is my right to report videos I think violate the guidelines.

 

Ah, I wondered where all the upvotes the video has acquired (and the couple of admiring comments that were there before they all got deleted) was coming from. Phil clickfarming his followers to support this 'courageous researcher'. Good grief.

Isn't clickfarming disallowed on YouTube? Maybe they should be sent a copy of Phil's tweet? Also, I wonder if the video could come under the 'Spam or Misleading' category as in Webdog's screenshot above, as Misleading.