Welcome to Oxford. I gather some of you have been here before.
I actually recognise some some faces from other courses that the department has put on.
And I'm sorry about the weather, but I can't do anything.
The buildings are pretty anyway. You're.
You're here to learn about research, design and and methods.
And so what I'm going to talk a bit about is what happens when treatments become available,
for which there is some evidence, but the evidence isn't that strong or it's inconclusive.
Politics become at play, policy becomes at play.
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
world and take what you've learned this week and apply it to your own practice for your own research and teaching.
So I'm going to talk about how patients, commercial organisations and researchers use this forum, YouTube,
to share experiences and opinions of a controversial theory and treatment for multiple sclerosis.
And I'm going to talk about how people use this to do two things to generate evidence.
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.
So there's that piece. And then there's also how people use this to advocate and to promote policy agendas.
I will start by just acknowledging my co-authors because I worked with two great people on this study.
Four Dilemmas on Tyranny is a medical sociologist at Durham.
John Powell works in the Department of Primary Care. We're going to spend the next 45 minutes talking about YouTube videos.
So I'm going to start by showing you one of these videos. This is a patient with multiple sclerosis.
And in this video, he's he's walking around his house.
Okay. He's showing you that due to this disease and due to the disabilities he has as a result of this disease,
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.
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.
And they're not typical patient words for things like hyper responsive, a toxic gait.
These are words that we associate with clinical interactions rather than with patients in particular.
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.
So this is someone who's who's put together this video prior to having what people have described as this liberation procedure.
Now, this is after he's had the procedure, he's again walking around his house.
And you can see I can see he's moving around a lot faster.
Whether or not that is a result of the treatment is is one thing.
And we're going to talk a bit about about that issue.
But for now, what this is,
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.
Okay. A bit of background just to start. So multiple sclerosis is widely accepted today to be an autoimmune condition.
It's a condition in which there's an aberrant immune response. It attacks the myelin sheath around central nervous system neurones.
This is responsible for the speed of conduction in the neurones.
And what happens when you lose the myelin sheath is conduction becomes inhibited.
And there are a whole host of symptoms that are then associated with this impaired conduction.
So things like sensory disturbances, trouble with vision balance and bladder disturbances, loss of ability, as we saw.
And there are also some characteristic cognitive and emotional changes which you can't see.
But people with multiple sclerosis have reported that they have these changes.
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.
The first report of M.S., the French neologism Michel Charcot, he of Shaka's Triad and Shaka's point, had failed.
Anyone who teaches medical students will have brought this up at 3 a.m. on the wards
when trying to stump someone short who thought that this was a vascular disease.
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.
And we actually have to go about seven years later until the 1950s,
when autoimmune knowledge became more widely available due to advances in
technology that this autoimmune theory of MSI aetiology began to predominate.
So that brings us to 2009, in which an Italian physician who was a surgeon whose wife has M.S.,
its name is Paolo Zamboni, and he sort of brought back this vascular theory.
He scanned a bunch of people, teams, and thought that that block neck veins might be responsible for for noise pathology.
And he called this CCSVI, called this chronic cerebrospinal venous insufficiency.
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,
that what you do is you unblock the veins.
You use venous, angioplasty, or what I call venous plastic of these two veins that are predominantly affected by this condition,
or so he described, and he called this the liberation procedure.
So what we have is is nice new terms. We have CCSVI, we have liberation procedure.
And he said this might work, this might slow progression, might improve symptoms.
And some of his initial reports suggested that people within us were much more likely to have this condition.
This is sort of what it looks like. It's done by interventional radiologists and to a lesser extent vascular surgeons.
Um, on the left in the picture is the some angioplasty images of the block neck vein at the start.
And then on the right is the improved flow of contrast dye after the veins have been opened.
So I said earlier that, you know, you're here to learn about research methods and study design.
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
those improvements in that first video to to this theory of this treatment.
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.?
That's number one. And number two, if that is true, then does it work?
Is it effective at reducing frequency of attack, severity of symptoms?
And I want to show you some of the evidence that seeks to, you know, try to explain these these two issues.
And I imagine you've been dealing with forest plots a little bit this week, so I can't help it.
To show you a forest plot. The British physician and author Ben Goldacre, with whom you might be familiar.
Author A bed farmer likes to call these blobby Grahams. I much prefer Blob Graham.
I would suggest using that instead makes them sound cooler somehow.
And this is a forest plot from a systematic review of the relationship between nose and like neck veins.
What we see is that this first study I was talking, I was telling you about Zamboni's study,
all of the patients in the UMass group and none of the patients in the control group, the healthy controls had blocked neck veins.
And this gives us an odds ratio of just under 60,000.
Let you sit with that one for a second. If we go below.
This is more patients versus controls with other neurologic diseases, things like Guillain-Barre syndrome.
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.
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.
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.
What these what this means is that the studies aren't actually that much like each other.
And in fact, if you take it a step further and you remove the big Zamboni's study from this from this meta analysis,
you find that the relationship breaks down. So that's the first thing.
The second thing is, does it work?
Well, a group of people very sensibly took what Sir Ian Chalmers, one of the founders of the Cochrane Collaboration,
described as as as the cardinal rule of research, which is that all research should begin and end with a systematic review.
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.
Here's a low quality study. What I'm zamboni's early studies in which he took.
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.
So that sounds pretty good. Okay, that sounds pretty good. It's not high quality evidence, but it's something.
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.
It's actually quite complicated.
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.
And now we're going to take it further to something that happened a few weeks ago.
There was a small randomised controlled trial done by some researchers in Buffalo
and the trial found that most patients didn't benefit from this intervention.
There was no reduced relapse, there was no improvement of symptoms, and this set off a flurry of activity.
This is from a Canadian magazine called McLain's, which has followed this issue quite closely.
And and this is one of the first articles to come out afterwards. The only thing liberated was their wallets.
Well, a couple of days later, someone fires back in the same magazine and says CCSVI is dead.
Not so fast. And this is what I want to draw your attention to.
This article says, Recently, the University of Buffalo researchers who studied the first are CTE on nine patients.
So now again, you're thinking, okay, that was in our city, but it's only in nine patients.
I'm not totally sure. Well, this paper hasn't come out yet.
So what they did is they put out a press release and then they reported their results on YouTube.
At University at Buffalo in the last 3 to 4 years, with extensive research investigating the prevalence of CCSVI in patients with multiple sclerosis,
healthy controls and patients with other neurological diseases.
Our findings over the last three years indicated that CCSVI is of higher prevalence in patients than in controls.
It has also been proposed that CCSVI should be corrected by an endovascular procedure.
The procedure consists in three opening the nose drain in the neck in the last 2 to 3 years.
More than 30,000 patients underwent correction for this stenosis because of the cut.
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.
If this is isn't the first case of of a fairly prominent trial putting its research results on YouTube before publication.
It's it's one of the very first and as you'll see interesting that it happened in multiple sclerosis.
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,
but the first one, I'll just read it out. Do we really expect any better?
Tell me that for the first three years since my procedure, I'm asymptomatic for me because I think positively.
What kind of kickback does this video afford you? I'm so tired of the lies and the hype.
Another one says Neurology would come out with this garbage. I'm going to pick up on this later.
I was treated three years ago and still have the benefits. So now what we see is there's a discussion.
There are researchers interacting with patients, interacting right back and using this forum, using YouTube,
using this type of interaction has it's been described by Roger Chafe and some Canadian colleagues as the rise of people power.
They've said this is the first time when people have actually been able to get right in there and have been able
to interact and been able to participate in the discourse right from their own homes with very little technology.
You don't need a lot of training to go onto YouTube and and to deal with this and that.
Having these aggregations of discussions and experiences have have led to advocacy events.
They've led to trying to promote the research agenda.
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.
Here's what we did. So I've described that there are a lot of YouTube videos that explain this issue,
describe it, portray patients experiences, and that's where we focussed our attention.
We search this term CCSVI, rather than searching for, you know,
cats jumping out of boxes or something like that, which is what most people look at on YouTube.
I've, of course, never watched a video of a cat jumping at a box,
but so we went on YouTube search and at the time we did this, there were more than 4000 videos.
I did this. I did this a couple nights ago. And and and there are more than 6000 videos now.
So this is about eight months after we did this. There's been an absolute explosion.
You know, this this hasn't dropped off by any means. And a few weeks ago, researchers choosing to use YouTube.
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,
do they portray this positively or negatively, or can we just not really figure out?
And then we classify them at the bottom into videos that portray patients experiences were videos that were not patient experiences,
and that research video is one example. We would have called that a not non patient video.
The overall results were that these videos were enormously positive, nearly totally positive.
They thought this was a good theory. People thought this was a very good idea.
They wanted the treatment, they had the treatment they reported it worked well.
And of these patient experience based videos, most were uploaded by patients themselves.
And and of those, most were like the first one I showed you this pre and post treatment experience.
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.
And I'll show you some some examples of things that happened in those videos.
You can see they have a lot of views. I said the first one had over 30,000 views.
Well, one of. The most viewed videos has nearly 80,000 views, and these numbers continue to rise.
Now, I describe to you that there are lots of these videos I've described to you.
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.
You know why? Why are people sitting down and spending a lot of time making these videos?
Why have 80,000 people watched someone walk out the front door of their house?
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.
And the first was to categorise them. So we looked at three categories.
The first we call personal treatment evidence.
So what this is, is people have gone on YouTube and they've posted pre and post videos.
So this is an example of a woman. She's walking around a hotel.
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.
I think you would agree with me that you would call that evidence, but it's not particularly strong.
You might call it nonexistent, but that's a discussion for for afterwards, I think.
And and so this isn't covered by the NHS,
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.
And this woman's in a posh hotel room and she's showing that she has to hold onto the wall to walk the.
The next one is called Commercial Patients Experience Videos.
These were companies that went on and describe that patients got better because of their therapy.
They're trying to sell you something, but trying to sell you a trip to a clinic.
They're trying to sell you their particular form of the therapy.
But they're using patient's experiences to to try to further their commercial agenda.
And there are thousands of these videos. It's just one example. Again, this has 12,000 views.
The the final type of videos in in many ways were the most interesting to us.
And we call these experiential video diaries. What this means is there were the videos where people did a one off.
This is what it was like before. This is how much better I am afterwards. See, doesn't this look?
This proves it works.
And then there were the ones where people filmed themselves over months and even years chronicling before they had the treatment.
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.
And this is one particular example.
So this guy has about 40 or 50 videos chronicling several years of his life and some of his experience.
There's some of him talking about, you know, he believes that an act is the result of this of this condition.
And explaining some reasons why he states many times he has some medical training.
He kind of sounds authoritative when when when he talks about this and then somebody is he just plays guitar and you can say,
well, okay, that's trivial plays guitar. Fair enough. But, um, but you get a sense of who these people are.
And while you might think that's trivial there,
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.
And I'll talk a bit about why that might actually increase the legitimacy of of these videos.
This is someone it's the same sort of thing. She's a few weeks post procedure.
She's saying something's got better, something's didn't. Some things are worse.
And here's out at her, out in an advocacy event to try to petition the government to fund trials for this.
So that's the broad categories of the video.
That's what's out there. And then we want to talk about this issue of what might make them so compelling.
Okay. Why are all these people going on YouTube and posting videos of this controversial treatment?
And I'll go to three, three themes, show you some examples.
And the first is that it's a visual medium. Now, I know this sounds kind of obvious, right?
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.
Uh. People can go on and demonstrate that they have difficulty walking around.
They can demonstrate that they can't do their job anymore.
And the emphasis in these videos is on is on physically demonstrating that post-treatment they've improved.
And people who are positive about this say they've improved because of the treatment.
Often the videos are filmed in the same place. I showed you that guy walking around his house.
Well, we can see that he's having a lot of trouble walking around his house at the start,
and then he's having a lot less trouble walking around his house afterwards.
And again, this enables you as the viewer to make a pretty direct comparison.
Wow. It took him 10 seconds to get across the foyer before, and now it only takes him five, for example.
We expected to see people talking about symptoms, saying, you know, my cognition is better.
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,
people using words like ataxia, and we didn't expect that people would demonstrate signs.
So this is a clinical distinction many people would be very familiar with.
This symptom is something a patient says, something patient says, this is going on.
And then a sign is a manifestation attributable to a particular disease that's perceptible to an observer.
Okay. And these videos incorporate both. And often people say things like, see this?
This is what you're neurologists will get you to do in his office. So I'll show you an example.
This is another patient, pre-treatment. Hi, I'm Linda.
Although this spinal lesions, I'm just going to skip forward a little bit to I want to show you.
But if I follow an object, I'm not. You're on the left. So she's going to test her own eye tracking.
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.
She's trying to demonstrate the horizontal nystagmus she has when she brings her finger to the periphery of her of her visual field.
Now, I know it's not clinically appropriate to check your own visual fields.
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.
This is a very specific thing, but it's going to be familiar to, well,
hopefully all my patients, because they will have had visual field examinations.
They and they may well have had have had this manifestation of the disease.
Here's another one. And it's the same sort of thing.
So someone in her house and what she's doing is standing there, putting her feet together and closing her eyes and falling over.
Thankfully, she doesn't bunker head on the air. And the thing there. And again, I know that this isn't done perfectly.
And now she's doing some she'll tell walking. But that first that first example is essentially a Romberg test.
It's a test that many of my patients will have had to do in their neurologist's
office to check the progression of the disease or to see if they're you know,
their symptoms are are flaring up. And time and time again in videos, people go for these very specific signs that,
as I mentioned, would really only stand out to my patient or practitioner watching the video.
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,
you know, you basically can't fake horizontal nystagmus.
That's something that it's either there or it isn't.
The next is how medical knowledge was dealt with.
And one of the comments I read out to you earlier was about, well, neurologists would say that, you know, this doesn't work,
of course, because they're in it for the money and they're going to go broke if, you know, if this takes off.
And time and time again, people framed neurologists and trained and societies who were until recently,
until this type of technology was available, they were the voice of patients.
Patient societies were what patients had to contribute to discourse to advocate.
Well, now, all of a sudden, people are saying and this societies are against this because they're going to go broke,
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.
They have a financial incentive to not get involved in this. And medical specialities were even pitted off against each other.
So neurologists were framed very negatively.
You know, they're they're in it for the money.
Whereas vascular surgeons, interventional radiologists, people who do this procedure reframe very positively.
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?
You know,
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,
Nope. I go in there, I do what I do, I see what I see, and I do what I do.
He's saying, No, I just have your best interests in mind.
Of course,
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,
so you have to pay for it yourself. You have to go to a clinic in Eastern Europe.
You have to go to a clinic in central to South America to have this done.
And people in the videos deal with safety. They deal with costs.
This is something that comes up a lot in the commercial videos.
People, commercial organisations talk a lot about our clinic is safer than these other other clinics, and here's why.
There are two examples of screenshots from some of these clinics.
A lot of them have these kind of glossy websites. You can even book the book, the procedure.
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.
So here's an example of how neurologists and and funding are dealt with.
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,
but it promotes specific clinics to get this procedure at home originates and this is how we can correct it.
I'm going to tell you exactly what my theory is and some of these doctors out there,
some of these pharmaceutical companies are not going to want to hear what I say, but this is what I believe and want.
Every other person with me out there believes that.
I talked to, number one, the pharmaceutical companies stand to lose hundreds of millions of dollars a month or a month
because every patient that goes in and takes to take some medications that I have been on a cost.
11, 12, 13, 1400 dollars a month on these medications.
None of them say they're going to cure you or they're going to make you better.
They all say they're going to, quote, stop the progression or slow it down.
Even my doctor. Just when I was coming.
Here he is. Seemed like, I hate to say.
You know, if he sees this, but it seemed like he was very annoyed that I was even doing this procedure.
A really great example of how some of these issues are dealt with.
And and and, you know, this this particular video is it's quite well produced, lots of camera angles.
There's that there's that scene where the the $50 bills are rolling around in the background, you know, the sinister music.
So there are a lot of things you can do with these with these videos.
And people have, especially the commercial organisations who have more resources to use these videos to promote their agenda.
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,
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,
but they're not just patients experiences of treatments or of conditions.
They're people filmed in their own homes.
Often they have family and friends behind the camera doing narration, saying things like, Wow, that's so much better.
I've never seen you like this. I haven't seen you in 15 years. You're a new person.
There's a certain degree of a very personal immediacy there.
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.
Like they go to the grocery store and they they demonstrate that they have a difficult time
putting their groceries on the belt or or things like this that seem superficially simple.
But what we suggest is that rather than, you know, making this somehow more subjective and that's worse,
that this personal immediacy is actually a distinguishing feature of of these videos, something you can't do in another medium.
And what it's like to have most people present this through their daily life.
It's this one one quote Someone asks this patient after treatment, what are you going to do first when you get home?
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.
Continuing the theme of videos in which people are in their foyer,
walking out the front door and go to the short video or medical area, know CCSVI treatment is here.
But you know, so we do have a bigger sort of a walk out to what that you do.
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.
Goodbye. Before video here on the marble.
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.
And they say why don't you leave it right tomorrow.
I'm, you know I'm leaving to Bulgaria tomorrow. It becomes not just about him, right from that 15 seconds of clip,
we know that he has a good relationship with his neighbours, that his neighbours know him.
They know that he's going to get this treatment. They wish him well.
This video demonstrates a little bit of a community. So what's going on here?
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.
I'll deal with the idea of evidence. First, I said that I would use a very broad definition of evidence,
and especially given the fact that you've been here in Oxford for week learning about research methods and study design,
you might be sceptical of my definition of evidence and there's a reason that we described it very deliberately in this way.
People in these videos aren't dealing with an escort of 89%.
They're showing you that they got better after the treatment and they're ascribing their improvement to the treatment.
Now, you can say this is regression to the mean. You can say this is placebo effect.
You can say any number of very plausible reasons why they might have had symptomatic improvement.
But in these videos, when people present their experiences, this in their minds,
in these videos proves that the treatment is effective and they prove the treatment is affected,
is effective in part through this portrayal of everyday life.
And what we suggest is that rather than making it more subjective, it actually enhances the legitimacy of of this evidence,
this experiential evidence is being presented because as a patient,
when you go on and you watch these videos, it becomes about real people like you who have gotten better from this treatment
and are able to do the things that they want to do better than before.
They can play with their children.
They couldn't before, for example, and that this experiential evidence is predicated on both personal experiences but also biomedical practices.
Those clinical signs that I was showing you, those aren't just an anecdote or an added thing.
They're integral to what this is about.
They're integral to how these experiences are being communicated to patients and to anyone who watches these videos.
What's different about YouTube then?
Whatever was available before, there have always been support groups.
What was been support groups in basement rooms where people with masks, for example,
could get together and describe how they're doing and gain support from each other.
But there might be five people there might be ten people in a support group.
There are over 4000 of these videos on on YouTube.
And what social media does is it allows for a mass aggregation of individual experiences of illness.
And they can be used for a variety of reasons.
They can be used for individual decision making, but they can also be used to advocate for research, priorities, setting and policy.
And it's not only patients who are involved, it's researchers, it's practitioners, it's commercial organisations.
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.
And people, the researchers are now using this to get the research out there and to disseminate it to the public.
And all this has really brought about this concern that this isn't people power at all, that this is pester power.
And what's going to happen is that this mass aggregation of individual experiences is going to hijack research agendas.
People are going to be forced to do research that not for a patient benefit and could even be unethical or harmful.
So in conclusion, there are no hard answers here, but there are some important take home points.
We all need to realise that patients may consider this type of experimental evidence significant,
even if practitioners, researchers, teachers disagree with its validity.
And what impact these videos have is a really difficult thing to answer.
But the fact that more and more are being produced, the views keep going up.
There are many comments on these videos.
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.
Is that intact? Again? It's hard to tell, but it lends to thinking that there is some impact to this.
And I would I would argue that the the proliferation of all of these experiences does demonstrate
that there's something going on that we we suggest that basically there are two things you can do.
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.
But as this group in Buffalo has shown us, there's more you can do.
You can try to get the research right. And then you can also engage with this content.
You now know it's out there. It's not only out there for this treatment.
In fact, it's out there for nearly everything you can think of.
And there are just as many videos for another M.S. treatment or another controversial treatment called low dose Naltrexone.
Some people would be in the audience would be familiar with with this, maybe patients coming in and asking about the evidence for it.
There are all sorts of videos of people saying, you know,
I was really bad beforehand and now I'm much better after for other treatments and other conditions as well.
And what we really want to do with this is is is show that it's out there to begin to
develop some ideas about why it continues to proliferate and what the effects might be,
and that we need to accept that there are tensions here that aren't going to resolve.
Practitioners face these. Clearly researchers face them.
People who make policy, who decide whether or not a trial is going to be funded, for example,
are all going to increasingly face these tensions as patients go on more and more and share their experiences of illness online.
And this happens in controversial treatments, but we're seeing more and more that it's also in well-accepted treatments,
that people are going online and they're using these new media to be able to contribute to the debate,
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.
That's everything I have. Thanks very much. I'm happy to take any questions. Well, thank you very.