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Welcome to Oxford. I gather some of you have been here before.

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I actually recognise some some faces from other courses that the department has put on.

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And I'm sorry about the weather, but I can't do anything.

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The buildings are pretty anyway. You're.

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You're here to learn about research, design and and methods.

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And so what I'm going to talk a bit about is what happens when treatments become available,

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for which there is some evidence, but the evidence isn't that strong or it's inconclusive.

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Politics become at play, policy becomes at play.

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And I'm going to talk about some of these issues and how you're going to deal with them as you go out into the

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world and take what you've learned this week and apply it to your own practice for your own research and teaching.

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So I'm going to talk about how patients, commercial organisations and researchers use this forum, YouTube,

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to share experiences and opinions of a controversial theory and treatment for multiple sclerosis.

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And I'm going to talk about how people use this to do two things to generate evidence.

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And when I say that, I'm taking a very broad definition of the word evidence, I'm going to talk about what I mean by that.

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So there's that piece. And then there's also how people use this to advocate and to promote policy agendas.

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I will start by just acknowledging my co-authors because I worked with two great people on this study.

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Four Dilemmas on Tyranny is a medical sociologist at Durham.

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John Powell works in the Department of Primary Care. We're going to spend the next 45 minutes talking about YouTube videos.

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So I'm going to start by showing you one of these videos. This is a patient with multiple sclerosis.

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And in this video, he's he's walking around his house.

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Okay. He's showing you that due to this disease and due to the disabilities he has as a result of this disease,

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he's having trouble getting around in his foyer, basically. And I know this might sound banal, but this video has nearly 40,000 views.

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And you can see he's coming out into the front yard. And as he turns around, there's there are words underneath that he's superimposed.

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And they're not typical patient words for things like hyper responsive, a toxic gait.

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These are words that we associate with clinical interactions rather than with patients in particular.

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And the other thing this video shows it's going to be important as we talk is that this is the what we call the pre-treatment phase.

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So this is someone who's who's put together this video prior to having what people have described as this liberation procedure.

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Now, this is after he's had the procedure, he's again walking around his house.

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And you can see I can see he's moving around a lot faster.

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Whether or not that is a result of the treatment is is one thing.

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And we're going to talk a bit about about that issue.

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But for now, what this is,

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is a video of someone showing that they're perceived treatment effect is that they're a whole lot better after they've had this.

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Okay. A bit of background just to start. So multiple sclerosis is widely accepted today to be an autoimmune condition.

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It's a condition in which there's an aberrant immune response. It attacks the myelin sheath around central nervous system neurones.

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This is responsible for the speed of conduction in the neurones.

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And what happens when you lose the myelin sheath is conduction becomes inhibited.

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And there are a whole host of symptoms that are then associated with this impaired conduction.

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So things like sensory disturbances, trouble with vision balance and bladder disturbances, loss of ability, as we saw.

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And there are also some characteristic cognitive and emotional changes which you can't see.

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But people with multiple sclerosis have reported that they have these changes.

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I said Ms. is widely accepted to be an autoimmune condition, but if we go back in the history, this wasn't actually the case.

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The first report of M.S., the French neologism Michel Charcot, he of Shaka's Triad and Shaka's point, had failed.

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Anyone who teaches medical students will have brought this up at 3 a.m. on the wards

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when trying to stump someone short who thought that this was a vascular disease.

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If we go a bit later, another another pathologist again continued to propose a bit of a change in theory, but still that it was a vascular disease.

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And we actually have to go about seven years later until the 1950s,

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when autoimmune knowledge became more widely available due to advances in

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technology that this autoimmune theory of MSI aetiology began to predominate.

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So that brings us to 2009, in which an Italian physician who was a surgeon whose wife has M.S.,

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its name is Paolo Zamboni, and he sort of brought back this vascular theory.

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He scanned a bunch of people, teams, and thought that that block neck veins might be responsible for for noise pathology.

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And he called this CCSVI, called this chronic cerebrospinal venous insufficiency.

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And he suggested that if the problem is that the neck veins are blocked and that blood isn't able to get out of the head,

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that what you do is you unblock the veins.

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You use venous, angioplasty, or what I call venous plastic of these two veins that are predominantly affected by this condition,

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or so he described, and he called this the liberation procedure.

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So what we have is is nice new terms. We have CCSVI, we have liberation procedure.

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And he said this might work, this might slow progression, might improve symptoms.

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And some of his initial reports suggested that people within us were much more likely to have this condition.

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This is sort of what it looks like. It's done by interventional radiologists and to a lesser extent vascular surgeons.

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Um, on the left in the picture is the some angioplasty images of the block neck vein at the start.

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And then on the right is the improved flow of contrast dye after the veins have been opened.

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So I said earlier that, you know, you're here to learn about research methods and study design.

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And I know what you're all thinking right now, which is that we need we need to know some things before we can ascribe any of

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those improvements in that first video to to this theory of this treatment.

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And and these are the two things we want to know. We want to know are most patients more likely to have blocked neck veins than those without M.S.?

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That's number one. And number two, if that is true, then does it work?

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Is it effective at reducing frequency of attack, severity of symptoms?

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And I want to show you some of the evidence that seeks to, you know, try to explain these these two issues.

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And I imagine you've been dealing with forest plots a little bit this week, so I can't help it.

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To show you a forest plot. The British physician and author Ben Goldacre, with whom you might be familiar.

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Author A bed farmer likes to call these blobby Grahams. I much prefer Blob Graham.

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I would suggest using that instead makes them sound cooler somehow.

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And this is a forest plot from a systematic review of the relationship between nose and like neck veins.

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What we see is that this first study I was talking, I was telling you about Zamboni's study,

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all of the patients in the UMass group and none of the patients in the control group, the healthy controls had blocked neck veins.

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And this gives us an odds ratio of just under 60,000.

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Let you sit with that one for a second. If we go below.

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This is more patients versus controls with other neurologic diseases, things like Guillain-Barre syndrome.

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Again, zero of the controls and all of the my patients have had long neck, face and neck consistent ratio of just under 20,000.

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So the overall shows a significant relationship, but you're not here to be able to see that a an odds ratio of 60,000 is unusual.

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You could probably have done that before you came this week. I suspect you may have gone here and I squared of 89% is significant heterogeneity.

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What these what this means is that the studies aren't actually that much like each other.

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And in fact, if you take it a step further and you remove the big Zamboni's study from this from this meta analysis,

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you find that the relationship breaks down. So that's the first thing.

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The second thing is, does it work?

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Well, a group of people very sensibly took what Sir Ian Chalmers, one of the founders of the Cochrane Collaboration,

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described as as as the cardinal rule of research, which is that all research should begin and end with a systematic review.

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So they did a systematic review and they showed at the bottom there that there were no high quality studies proving whether or not this worked.

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Here's a low quality study. What I'm zamboni's early studies in which he took.

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It's basically a case series of patients and he said that an 18 month follow up, twice as many patients who had the treatment were free relapse.

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So that sounds pretty good. Okay, that sounds pretty good. It's not high quality evidence, but it's something.

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What I'm trying to show you here is that there's evidence for there's evidence against to figure out some of these issues.

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It's actually quite complicated.

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You need you need some pretty advanced knowledge to be able to go through that and to see, for example, oh, but look at the heterogeneity.

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And now we're going to take it further to something that happened a few weeks ago.

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There was a small randomised controlled trial done by some researchers in Buffalo

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and the trial found that most patients didn't benefit from this intervention.

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There was no reduced relapse, there was no improvement of symptoms, and this set off a flurry of activity.

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This is from a Canadian magazine called McLain's, which has followed this issue quite closely.

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And and this is one of the first articles to come out afterwards. The only thing liberated was their wallets.

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Well, a couple of days later, someone fires back in the same magazine and says CCSVI is dead.

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Not so fast. And this is what I want to draw your attention to.

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This article says, Recently, the University of Buffalo researchers who studied the first are CTE on nine patients.

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So now again, you're thinking, okay, that was in our city, but it's only in nine patients.

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I'm not totally sure. Well, this paper hasn't come out yet.

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So what they did is they put out a press release and then they reported their results on YouTube.

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At University at Buffalo in the last 3 to 4 years, with extensive research investigating the prevalence of CCSVI in patients with multiple sclerosis,

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healthy controls and patients with other neurological diseases.

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Our findings over the last three years indicated that CCSVI is of higher prevalence in patients than in controls.

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It has also been proposed that CCSVI should be corrected by an endovascular procedure.

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The procedure consists in three opening the nose drain in the neck in the last 2 to 3 years.

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More than 30,000 patients underwent correction for this stenosis because of the cut.

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So I'm going to stop it there. But he goes on to describe what I've just described, which is that they didn't find the treatment was effective.

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If this is isn't the first case of of a fairly prominent trial putting its research results on YouTube before publication.

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It's it's one of the very first and as you'll see interesting that it happened in multiple sclerosis.

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And I'm going to suggest some of the reasons why this is some of the comments under the video might be slightly difficult to see,

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but the first one, I'll just read it out. Do we really expect any better?

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Tell me that for the first three years since my procedure, I'm asymptomatic for me because I think positively.

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What kind of kickback does this video afford you? I'm so tired of the lies and the hype.

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Another one says Neurology would come out with this garbage. I'm going to pick up on this later.

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I was treated three years ago and still have the benefits. So now what we see is there's a discussion.

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There are researchers interacting with patients, interacting right back and using this forum, using YouTube,

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using this type of interaction has it's been described by Roger Chafe and some Canadian colleagues as the rise of people power.

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They've said this is the first time when people have actually been able to get right in there and have been able

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to interact and been able to participate in the discourse right from their own homes with very little technology.

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You don't need a lot of training to go onto YouTube and and to deal with this and that.

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Having these aggregations of discussions and experiences have have led to advocacy events.

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They've led to trying to promote the research agenda.

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And that's what I'm going to talk to you about and show some examples of this idea of the rise of people power.

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Here's what we did. So I've described that there are a lot of YouTube videos that explain this issue,

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describe it, portray patients experiences, and that's where we focussed our attention.

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We search this term CCSVI, rather than searching for, you know,

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cats jumping out of boxes or something like that, which is what most people look at on YouTube.

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I've, of course, never watched a video of a cat jumping at a box,

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but so we went on YouTube search and at the time we did this, there were more than 4000 videos.

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I did this. I did this a couple nights ago. And and and there are more than 6000 videos now.

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So this is about eight months after we did this. There's been an absolute explosion.

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You know, this this hasn't dropped off by any means. And a few weeks ago, researchers choosing to use YouTube.

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I think it was a very deliberate decision on their part. So we looked at these videos and the first thing we did is, is decide,

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do they portray this positively or negatively, or can we just not really figure out?

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And then we classify them at the bottom into videos that portray patients experiences were videos that were not patient experiences,

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and that research video is one example. We would have called that a not non patient video.

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The overall results were that these videos were enormously positive, nearly totally positive.

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They thought this was a good theory. People thought this was a very good idea.

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They wanted the treatment, they had the treatment they reported it worked well.

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And of these patient experience based videos, most were uploaded by patients themselves.

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And and of those, most were like the first one I showed you this pre and post treatment experience.

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So people have really gone out of their way to, to do a video before they had the treatment and to do video after the treatment.

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And I'll show you some some examples of things that happened in those videos.

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You can see they have a lot of views. I said the first one had over 30,000 views.

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Well, one of. The most viewed videos has nearly 80,000 views, and these numbers continue to rise.

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Now, I describe to you that there are lots of these videos I've described to you.

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A lot of people watch them. What we try to do is is try to figure out what's going on, what may possibly make these compelling.

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You know why? Why are people sitting down and spending a lot of time making these videos?

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Why have 80,000 people watched someone walk out the front door of their house?

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It's not trivial. There's something going on here. And I'm going to show you two ways that we sort of looked at these videos.

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And the first was to categorise them. So we looked at three categories.

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The first we call personal treatment evidence.

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So what this is, is people have gone on YouTube and they've posted pre and post videos.

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So this is an example of a woman. She's walking around a hotel.

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Often they're filmed in hotel rooms in kind of remote locations because, of course, I showed you that the evidence base is not particularly strong.

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I think you would agree with me that you would call that evidence, but it's not particularly strong.

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You might call it nonexistent, but that's a discussion for for afterwards, I think.

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And and so this isn't covered by the NHS,

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it's not covered by the Canadian health care system or HMO is in the U.S. so people have to engage in medical tourism to go and get this.

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And this woman's in a posh hotel room and she's showing that she has to hold onto the wall to walk the.

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The next one is called Commercial Patients Experience Videos.

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These were companies that went on and describe that patients got better because of their therapy.

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They're trying to sell you something, but trying to sell you a trip to a clinic.

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They're trying to sell you their particular form of the therapy.

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But they're using patient's experiences to to try to further their commercial agenda.

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And there are thousands of these videos. It's just one example. Again, this has 12,000 views.

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The the final type of videos in in many ways were the most interesting to us.

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And we call these experiential video diaries. What this means is there were the videos where people did a one off.

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This is what it was like before. This is how much better I am afterwards. See, doesn't this look?

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This proves it works.

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And then there were the ones where people filmed themselves over months and even years chronicling before they had the treatment.

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Their trip to the treatment. There are videos of people on aeroplanes looking elated because they know they're going to go and get this done.

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And this is one particular example.

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So this guy has about 40 or 50 videos chronicling several years of his life and some of his experience.

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There's some of him talking about, you know, he believes that an act is the result of this of this condition.

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And explaining some reasons why he states many times he has some medical training.

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He kind of sounds authoritative when when when he talks about this and then somebody is he just plays guitar and you can say,

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well, okay, that's trivial plays guitar. Fair enough. But, um, but you get a sense of who these people are.

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And while you might think that's trivial there,

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there's actually something to it that over time they put in the effort to share all this stuff with you and to get you to learn who they are.

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And I'll talk a bit about why that might actually increase the legitimacy of of these videos.

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This is someone it's the same sort of thing. She's a few weeks post procedure.

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She's saying something's got better, something's didn't. Some things are worse.

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And here's out at her, out in an advocacy event to try to petition the government to fund trials for this.

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So that's the broad categories of the video.

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That's what's out there. And then we want to talk about this issue of what might make them so compelling.

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Okay. Why are all these people going on YouTube and posting videos of this controversial treatment?

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And I'll go to three, three themes, show you some examples.

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And the first is that it's a visual medium. Now, I know this sounds kind of obvious, right?

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YouTube visual. But what it enables people to do is it's not like it's not like a health forum on the internet from ten years ago.

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Uh. People can go on and demonstrate that they have difficulty walking around.

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They can demonstrate that they can't do their job anymore.

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And the emphasis in these videos is on is on physically demonstrating that post-treatment they've improved.

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And people who are positive about this say they've improved because of the treatment.

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Often the videos are filmed in the same place. I showed you that guy walking around his house.

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Well, we can see that he's having a lot of trouble walking around his house at the start,

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and then he's having a lot less trouble walking around his house afterwards.

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And again, this enables you as the viewer to make a pretty direct comparison.

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Wow. It took him 10 seconds to get across the foyer before, and now it only takes him five, for example.

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We expected to see people talking about symptoms, saying, you know, my cognition is better.

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I feel more with it, I have less pain. But what we didn't expect is and I alluded to this earlier in the first video,

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people using words like ataxia, and we didn't expect that people would demonstrate signs.

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So this is a clinical distinction many people would be very familiar with.

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This symptom is something a patient says, something patient says, this is going on.

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And then a sign is a manifestation attributable to a particular disease that's perceptible to an observer.

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Okay. And these videos incorporate both. And often people say things like, see this?

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This is what you're neurologists will get you to do in his office. So I'll show you an example.

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This is another patient, pre-treatment. Hi, I'm Linda.

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Although this spinal lesions, I'm just going to skip forward a little bit to I want to show you.

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But if I follow an object, I'm not. You're on the left. So she's going to test her own eye tracking.

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So it's not totally clear in the video, but you can see a little bit what she's trying to demonstrate is into nuclear ophthalmology.

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She's trying to demonstrate the horizontal nystagmus she has when she brings her finger to the periphery of her of her visual field.

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Now, I know it's not clinically appropriate to check your own visual fields.

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I get this, but she's demonstrating something that if you weren't in my patient or you weren't a practitioner, you wouldn't know what to look for.

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This is a very specific thing, but it's going to be familiar to, well,

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hopefully all my patients, because they will have had visual field examinations.

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They and they may well have had have had this manifestation of the disease.

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Here's another one. And it's the same sort of thing.

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So someone in her house and what she's doing is standing there, putting her feet together and closing her eyes and falling over.

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Thankfully, she doesn't bunker head on the air. And the thing there. And again, I know that this isn't done perfectly.

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And now she's doing some she'll tell walking. But that first that first example is essentially a Romberg test.

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It's a test that many of my patients will have had to do in their neurologist's

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office to check the progression of the disease or to see if they're you know,

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their symptoms are are flaring up. And time and time again in videos, people go for these very specific signs that,

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as I mentioned, would really only stand out to my patient or practitioner watching the video.

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So that's that's the first this idea that it's a visual medium and you can demonstrate things that otherwise you couldn't,

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you know, you basically can't fake horizontal nystagmus.

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That's something that it's either there or it isn't.

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The next is how medical knowledge was dealt with.

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And one of the comments I read out to you earlier was about, well, neurologists would say that, you know, this doesn't work,

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of course, because they're in it for the money and they're going to go broke if, you know, if this takes off.

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And time and time again, people framed neurologists and trained and societies who were until recently,

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until this type of technology was available, they were the voice of patients.

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Patient societies were what patients had to contribute to discourse to advocate.

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Well, now, all of a sudden, people are saying and this societies are against this because they're going to go broke,

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because they're going to lose their funding. No one's going to give them money. So obviously, you know, they have a big incentive.

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They have a financial incentive to not get involved in this. And medical specialities were even pitted off against each other.

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So neurologists were framed very negatively.

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You know, they're they're in it for the money.

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Whereas vascular surgeons, interventional radiologists, people who do this procedure reframe very positively.

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So this one one quote from from a patient who says, and I'm like, Aren't you afraid that neurology will find out that you're doing this?

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You know,

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they might come down from that from the upper floors in the hospital and see that you're doing this in the O.R. and and the vascular surgeon replies,

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Nope. I go in there, I do what I do, I see what I see, and I do what I do.

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He's saying, No, I just have your best interests in mind.

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Of course,

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the the final thing that comes into play here is that because the evidence base is so shaky for this and you can't get it covered on health insurance,

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so you have to pay for it yourself. You have to go to a clinic in Eastern Europe.

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You have to go to a clinic in central to South America to have this done.

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And people in the videos deal with safety. They deal with costs.

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This is something that comes up a lot in the commercial videos.

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People, commercial organisations talk a lot about our clinic is safer than these other other clinics, and here's why.

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There are two examples of screenshots from some of these clinics.

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A lot of them have these kind of glossy websites. You can even book the book, the procedure.

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You can kind of go on a three day vacation beforehand. If it's in you know, if it's in a nice place, they'll put you up in a swanky hotel.

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So here's an example of how neurologists and and funding are dealt with.

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This is one of these commercial patient experience video. This is a slightly strange organisation that doesn't entirely make clear what it's doing,

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but it promotes specific clinics to get this procedure at home originates and this is how we can correct it.

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I'm going to tell you exactly what my theory is and some of these doctors out there,

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some of these pharmaceutical companies are not going to want to hear what I say, but this is what I believe and want.

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Every other person with me out there believes that.

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I talked to, number one, the pharmaceutical companies stand to lose hundreds of millions of dollars a month or a month

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because every patient that goes in and takes to take some medications that I have been on a cost.

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11, 12, 13, 1400 dollars a month on these medications.

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None of them say they're going to cure you or they're going to make you better.

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They all say they're going to, quote, stop the progression or slow it down.

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Even my doctor. Just when I was coming.

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Here he is. Seemed like, I hate to say.

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You know, if he sees this, but it seemed like he was very annoyed that I was even doing this procedure.

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A really great example of how some of these issues are dealt with.

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And and and, you know, this this particular video is it's quite well produced, lots of camera angles.

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There's that there's that scene where the the $50 bills are rolling around in the background, you know, the sinister music.

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So there are a lot of things you can do with these with these videos.

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And people have, especially the commercial organisations who have more resources to use these videos to promote their agenda.

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The last aspect of this that we suggest really contributes to to why so many people watch them, why so many people put them up,

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why it was the first place that research group wanted to go to to report the results of their research is that there are all these videos,

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but they're not just patients experiences of treatments or of conditions.

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They're people filmed in their own homes.

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Often they have family and friends behind the camera doing narration, saying things like, Wow, that's so much better.

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I've never seen you like this. I haven't seen you in 15 years. You're a new person.

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There's a certain degree of a very personal immediacy there.

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There are several videos in which people go and they they do kind of things that you and I would take for granted that we can do in a day.

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Like they go to the grocery store and they they demonstrate that they have a difficult time

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putting their groceries on the belt or or things like this that seem superficially simple.

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But what we suggest is that rather than, you know, making this somehow more subjective and that's worse,

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that this personal immediacy is actually a distinguishing feature of of these videos, something you can't do in another medium.

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And what it's like to have most people present this through their daily life.

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It's this one one quote Someone asks this patient after treatment, what are you going to do first when you get home?

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And he says, I'll be able to play with my son. I'll be able to do so much more than I ever could.

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Continuing the theme of videos in which people are in their foyer,

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walking out the front door and go to the short video or medical area, know CCSVI treatment is here.

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But you know, so we do have a bigger sort of a walk out to what that you do.

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So you're saying pre-treatment before I go to Bulgaria and I want you to watch what happens when he gets out the door so slowly.

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Goodbye. Before video here on the marble.

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Yeah. So he gets up the front door and his neighbours are in the yard beside him and and he says oh I'm doing my before video.

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And they say why don't you leave it right tomorrow.

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I'm, you know I'm leaving to Bulgaria tomorrow. It becomes not just about him, right from that 15 seconds of clip,

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we know that he has a good relationship with his neighbours, that his neighbours know him.

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They know that he's going to get this treatment. They wish him well.

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This video demonstrates a little bit of a community. So what's going on here?

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I said at the start that two things are happening. There's evidence being generated and that there's these are being used for advocacy.

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I'll deal with the idea of evidence. First, I said that I would use a very broad definition of evidence,

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and especially given the fact that you've been here in Oxford for week learning about research methods and study design,

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you might be sceptical of my definition of evidence and there's a reason that we described it very deliberately in this way.

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People in these videos aren't dealing with an escort of 89%.

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They're showing you that they got better after the treatment and they're ascribing their improvement to the treatment.

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Now, you can say this is regression to the mean. You can say this is placebo effect.

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You can say any number of very plausible reasons why they might have had symptomatic improvement.

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But in these videos, when people present their experiences, this in their minds,

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in these videos proves that the treatment is effective and they prove the treatment is affected,

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is effective in part through this portrayal of everyday life.

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And what we suggest is that rather than making it more subjective, it actually enhances the legitimacy of of this evidence,

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this experiential evidence is being presented because as a patient,

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when you go on and you watch these videos, it becomes about real people like you who have gotten better from this treatment

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and are able to do the things that they want to do better than before.

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They can play with their children.

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They couldn't before, for example, and that this experiential evidence is predicated on both personal experiences but also biomedical practices.

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Those clinical signs that I was showing you, those aren't just an anecdote or an added thing.

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They're integral to what this is about.

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They're integral to how these experiences are being communicated to patients and to anyone who watches these videos.

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What's different about YouTube then?

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Whatever was available before, there have always been support groups.

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What was been support groups in basement rooms where people with masks, for example,

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could get together and describe how they're doing and gain support from each other.

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But there might be five people there might be ten people in a support group.

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There are over 4000 of these videos on on YouTube.

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And what social media does is it allows for a mass aggregation of individual experiences of illness.

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And they can be used for a variety of reasons.

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They can be used for individual decision making, but they can also be used to advocate for research, priorities, setting and policy.

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And it's not only patients who are involved, it's researchers, it's practitioners, it's commercial organisations.

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They're all getting involved in this more and more. And we've seen, even since we first did this project, how things have changed a little bit.

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And people, the researchers are now using this to get the research out there and to disseminate it to the public.

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And all this has really brought about this concern that this isn't people power at all, that this is pester power.

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And what's going to happen is that this mass aggregation of individual experiences is going to hijack research agendas.

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People are going to be forced to do research that not for a patient benefit and could even be unethical or harmful.

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So in conclusion, there are no hard answers here, but there are some important take home points.

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We all need to realise that patients may consider this type of experimental evidence significant,

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even if practitioners, researchers, teachers disagree with its validity.

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And what impact these videos have is a really difficult thing to answer.

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But the fact that more and more are being produced, the views keep going up.

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There are many comments on these videos.

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Some have hundreds of comments in which people say things like, Wow, you convinced me to get this done and now I'm much better.

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Is that intact? Again? It's hard to tell, but it lends to thinking that there is some impact to this.

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And I would I would argue that the the proliferation of all of these experiences does demonstrate

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that there's something going on that we we suggest that basically there are two things you can do.

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You can say this is junk, this isn't evidence. I'm not going to deal with it and I'm going to focus on on getting the research right.

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But as this group in Buffalo has shown us, there's more you can do.

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You can try to get the research right. And then you can also engage with this content.

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You now know it's out there. It's not only out there for this treatment.

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In fact, it's out there for nearly everything you can think of.

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And there are just as many videos for another M.S. treatment or another controversial treatment called low dose Naltrexone.

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Some people would be in the audience would be familiar with with this, maybe patients coming in and asking about the evidence for it.

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There are all sorts of videos of people saying, you know,

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I was really bad beforehand and now I'm much better after for other treatments and other conditions as well.

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And what we really want to do with this is is is show that it's out there to begin to

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develop some ideas about why it continues to proliferate and what the effects might be,

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and that we need to accept that there are tensions here that aren't going to resolve.

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Practitioners face these. Clearly researchers face them.

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People who make policy, who decide whether or not a trial is going to be funded, for example,

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are all going to increasingly face these tensions as patients go on more and more and share their experiences of illness online.

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And this happens in controversial treatments, but we're seeing more and more that it's also in well-accepted treatments,

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that people are going online and they're using these new media to be able to contribute to the debate,

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to be able to push research agendas and to be able to share their own experiences and their own perceptions of whether things work or not.

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That's everything I have. Thanks very much. I'm happy to take any questions. Well, thank you very.