InitialConditions
Senior Member (Voting Rights)
Yes, this could be an alternative story/angle that would perhaps negate the need to dive into the controversy about PACE etc.
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Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm
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Yes, this could be an alternative story/angle that would perhaps negate the need to dive into the controversy about PACE etc.
JemPD
Senior Member (Voting Rights)
Yes i've watched it. But i still maintain that the whole 'mind body connection' thing is much more beloved & popular than it was 20yrs ago.
I've watched as the cult of Positive Mental Attitude & mind-body has risen in popularity until its become almost ubiquitous. So an editorial team/journalist who believed in the reality of suffering in ME in 1990, would have been far less likely to lap up a load of twaddle about mind body connection, whereas nowadays its so part of the zeitgeist that its lapped up without any critical thinking whatsoever.
At the turn of the millenium when i became ill, it seemed to me that the lines were drawn pretty clearly between believers - who knew & could see we were ill, & non believers who thought we were lying/insane & had no compassion. These days we've got a much much muddier picture. And we have a lot of people who either think they're being compassionate or are pretending to be, who can make a very good case on the surface to make it appear that what they are saying is right and anyone who thinks otherwise is too stupid/ignorant etc etc etc to understand and need to get out of the way so they can help patients.
And unless you've got a cross between Jeremy Paxman's interviewing skills informed by Jonathan (or similar's) knowledge then i dont see how you can hope to ensure it doesnt go the wrong way...
I mean have you seen Wessely be interviewed??!! he is one of the slickest, most apparently charming, cleverest people i've ever seen. He has them all eating out of his hand in a couple of sentences.
What could be good though... is someone like Ed Stafford, who is already aware of things, being pitched to do a programme on ME/CFS, and Long Covid, akin to his current 3 part doc "60 days on the Estates" which is very good.
Watch 60 Days on the Estates | Stream free on Channel 4
Guardian article about the programme... 60 Days on the Estates review – how to make a great show about social housing? Don’t involve Tory MPs | Television & radio | The Guardian
And we know Ed is sympathetic because he has raised money for the MEA as part of one of his previous expeditions across South America.
Although to be fair whats needed isnt really sympathy is it, its critical thinking and an ability to see past the smoke screen. I mean that recent talk by @Brian Hughes about "NICE guideline myths" is top notch & i hope would be a big part of any pitch if you're going to include why the BPS argument against NICE is drivel. Its been discussed here on S4 but i cant find it now.
Oh and imagine if David Tuller was on it too. Goodness, it really could be awesome for these stellar people, Tuller, Edwards & Hughes, imagine it....
I can see the attraction. But truly the BBC terrify me.
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If this thing turns into an appeal to authority contest (which it very well might, if showing facts and data was enough we wouldn't be in this situation) we could have an esteemed psychologist or psychiatrist in the film talk about how these treatments don't work and the illness probably isn't mental? Or show the letters signed in the past by lots of doctors. It might seem redundant with the new guidelines but it's important to give the idea this is the new consensus by doctors rather than the product of militant patients. Just my 2 cents.
Would such a psychologist exist that overshadows Wessely and is as invested in him in the topic? I don't think so. We're basically saying that a knighted and world-wide leading psychologist, head of his departement, former president of the Royal Society of Medicine, Fellow of the Royal Society, one of the most influential doctors in the whole country and member of the NHS board isn't much more than a fraud.
In times where nothing is more en-vogue than the mind-body connection would a list of some doctor signed letters really change the view of an independent journalist talking to Wessely, who also has colleagues all across the world who agree with him and are running massive trials that are government funded?
I believe it will be very hard to have a Panorama programme focused on Long-Covid where psychological aspects aren't at least given a very big importance in the disease. This would require a lot of delicacy for it to work. For ME/CFS the chances are far, far smaller.
Perhaps it would be good to do a Long-Covid test run first and if that works out well go for ME/CFS. I even believe that integrating ME/CFS into a Long-Covid programme could be potentially damaging.
I think a good way to start something like this is with lots and lots of proper and really good investigative journalists from smaller formats writing about the topics of Long-Covid and ME/CFS. That way the story is picked up in a similar manner later in larger programmes. Nowadays most news reports on Long-Covid still seem to be mixed 50% physiological, 50% psychological.
I would say that was considerably more than significant. They more-or-less overturned it completely.
Wessely is the one of the greatest sophists and propagandists of our age. His ability to lead an audience to a conclusion, while flattering them that they reached it independently, is unsurpassed.
Not joking.
Wessely is a psychiatrist (a medical doctor who specialised in psychiatry).
You might be right, but let me elaborate what my thinking was:
Historically debate on ME has been hijacked and turned into a mental vs physical kind of thing. This is not advantageous to us because someone like Wessely is regarded to be an expert on mental disorders, and because the patients may seem mental at a first glance (from decades of stigma), so most people would give him the benefit of the doubt despite the lack of evidence. Then they take it a step further, with the whole biopsychosocial thing where they claim their expertise extends to biological illness as well, and the complex interplay within mind and body. In this context, someone like Wessely has more authority than someone like a rheumatologist.
Instead, by showing there are psychologists and psychiatrists who disagree with Weasely (ostensibly because they value evidence), it could be easier to argue that he is doing what he's doing simply for personal interests rather than the patients' (which is a more politically correct way to say that he is indeed a fraud). It's not mental vs physical, it's their interests vs ours and most people would agree the whole point of medicine is to serve the patient's interests. Hope I got the point across.
dratalanta
Senior Member (Voting Rights)
I am aware of a well-regarded, multi-award-winning science documentary company which thought this was a fantastic story and attempted to pitch this a few months back. They were knocked back in very definitive terms by all the obvious commissioning editors in UK broadcast television.
My impression is that for something like this to get commissioned, it will require some combination of: luck with commissioning editors (an unusual individual willing and able to push this with their channel), a compelling programme concept and story (perhaps involving a celebrity), new scientific developments, and/or a commissioning route which circumvents anyone connected to the Science Media Centre (which at most broadcasters means avoiding both the Science and Current Affairs teams).
So Ed Stafford might be a good left-field idea.
My impression is that for something like this to get commissioned, it will require some combination of: luck with commissioning editors (an unusual individual willing and able to push this with their channel), a compelling programme concept and story (perhaps involving a celebrity), new scientific developments, and/or a commissioning route which circumvents anyone connected to the Science Media Centre (which at most broadcasters means avoiding both the Science and Current Affairs teams).
So Ed Stafford might be a good left-field idea.
Jo, Willy Weir and I had a meeting at BBC after someone who worked there contacted me and was trying to push something through. I can't remember when it was, but I think a year or two before the pandemic--I thought it was later than 2017. The meeting included a doc-maker who'd worked on the 1999 show, if I remember correctly--Michael someone or other. He was interested. After our meeting, BBC sent PACE to an "independent" statistician, who said it wasn't as bad as we were making it out to me. And that was that.
I think, given long Covid, the chances of a documentary solely on ME are pretty slim. LC and the controversy around it is the obvious news hook. The best way to get something going would be the way that previous effort started--with someone inside and/or with contacts/connections at BBC or other British TV venues to push it through. That is, someone who understands the issues already and is committed to telling the story. I doubt an appeal from a patient group sent to lots of people, no matter how well laid out, would get much traction. I mean, I could be wrong!! But that's my gut feeling. I mean, appealing to or approaching a particular reporter/producer and getting them on board to push it could work.
But my guess is no one without personal experience of ME or LC--and by that I don't mean they have to be sick themselves but perhaps a loved one or close friend--would be interested or have any understanding of what the issues are, even if they read an appeal or description. Given how counter-intuitive to recommend against exercise, and how CBT seems to be widely accepted in UK as treatment for everything, it would be hard to get the point across to anyone who hasn't first-hand understanding.
There's not much point is saying a program would need to have this person or that person or a counter-Wessely or whatever. There would be zero control over any of it. Once it was taken up by whomever, the proposal that launched it would be pretty much irrelevant because they'd do all their own research. Of course, people could be put forward and suggested as good interviewees, but the documentary would not be made per patient request or approval but per however the person doing it and their bosses wanted to do it. And yes, both-sides-ism would likely be a big part of it, most likely.
I don't like to be a downer, and I certainly wouldn't tell someone not to reach out to BBC or whomever. But the chances of it resulting in anything, much less something that would tell the story the way one would want to, seems unlikely. I mean, if George Monbiot were at BBC, that would be different. Or if he did in fact do a big written investigation, that would be great. Perhaps there are BBC journalists more or less in his camp who could be approached. But I do think this sort of reaching out would best be done to individuals who already have an interest and awareness of how fucked-up this has all been.
Rowland Manthorpe is the technology correspondent for Sky News. I presume he is still ill with LC and off work. He made a short clip for Sky News in Dec 2022. It might be worth contacting him.
(A dream, but imagine for a moment a journalistic "meta-analysis" with Rowland Manthorpe (personal lived experience), George Monbiot and Ed Yong (with credentials and friends/family lived experience respectively). Co-ordinated publications flooding the zone and leading on to higher profile investigations such as Panorama.)
Brian's a great interviewee, but it's the journalist trying to push the story past the obstacles that needs the credentials and clout at a UK news organization. When I was a reporter at the SF Chronicle, for example, I could have pushed through a big package like that. My crowdfunding, however, has shifted my role, so while I still view myself as a journalist as well as an academic, I can only propose opinionated pieces on this issue.
I agree with all the cautions expressed. However compelling a case and clear outline with suggested presenter, speakers etc we may provide, once it's in the hands of producers, executives calling for balance etc, it's completely outside our control, particularly on the BBC who will feel compelled to give Wessely his say. And Channel 4 which has less of a remit to balance every program has a reputation, at least in my household, of giving airtime to people with completely nutty theories. We could lose credibility just as easily as gaining it.
I know newspapers and books are old fashioned, but at least they can be more under the control of the authors.
And how do you get the complexities of what is wrong with PACE and GET across to a largely uninterested general audience who see other diseases like cancer and dementia as far more important, and who are more likely to believe the founder of GOOP than some unknown doctor.
Sorry to be negative, but I think this proposal, though worthwhile and well thought out in a rational world, is a non starter in the currently irrational UK, where the NHS is falling apart and waiting lists for all treatments are sky high.
A program about the complexities in the story of a disease most people haven't heard of and most who have think it's about tiredness just isn't going to capture producers or audience interest. The moment has passed with the NICE guideline. It's old news.
I would like to see popular science/health books written about the ME scandal and articles in newspapers winning prizes for investigative journalism. The people we need to convince are clinicians, researchers, and policy makers. I don't think an ephemeral TV program that the Wesselyites can dismiss as biased will have any impact on our care.
I know newspapers and books are old fashioned, but at least they can be more under the control of the authors.
And how do you get the complexities of what is wrong with PACE and GET across to a largely uninterested general audience who see other diseases like cancer and dementia as far more important, and who are more likely to believe the founder of GOOP than some unknown doctor.
Sorry to be negative, but I think this proposal, though worthwhile and well thought out in a rational world, is a non starter in the currently irrational UK, where the NHS is falling apart and waiting lists for all treatments are sky high.
A program about the complexities in the story of a disease most people haven't heard of and most who have think it's about tiredness just isn't going to capture producers or audience interest. The moment has passed with the NICE guideline. It's old news.
I would like to see popular science/health books written about the ME scandal and articles in newspapers winning prizes for investigative journalism. The people we need to convince are clinicians, researchers, and policy makers. I don't think an ephemeral TV program that the Wesselyites can dismiss as biased will have any impact on our care.
livinglighter
Senior Member (Voting Rights)
I agree with @EndME, @dave30th and @Trish plus I’m taking heed of the recent events @dratalanta has mentioned.
The fact that NICE had to bend to these people says a lot.
Not to hijack this thread but at this stage, I'm wondering if what people also want to achieve is what happened with group litigation akin to the Haemophilia Contaminated Blood Scandal?
Otherwise from that, the truth is there would be no control over the story and there is a lot to unpack in order to override the overall acceptance and major investment into mind-body medicine now.
The fact that NICE had to bend to these people says a lot.
Not to hijack this thread but at this stage, I'm wondering if what people also want to achieve is what happened with group litigation akin to the Haemophilia Contaminated Blood Scandal?
Otherwise from that, the truth is there would be no control over the story and there is a lot to unpack in order to override the overall acceptance and major investment into mind-body medicine now.
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Hoopoe
Senior Member (Voting Rights)
If I look at that study of asthma patients treated intentionally with a placebo and real medication, and then at CBT for ME, I can not see much of a difference.
In the asthma study they recorded substantial improvements in breathing even in patients treated with placebos. The objectively measured breathing ability only changed in the medication group.
In ME we see something similar: improvement in self-reported fatigue and other subjective outcomes but no objective improvement. And the self-reported outcomes then inform the alleged perpetuating factors of ME, which appears to be just a convoluted way of saying that patients that are told to view their fatigue as normal, and not to focus on fatigue because that will make it worse, and similar things, will after several such therapy sessions rate their fatigue as less severe.
And the CBT people now tend to avoid using objective outcomes, or hide the results, or try to reposition fatigue as a psychological thing detached from real world functioning.
This is fraud in plain daylight.
And as result of this lots of people believe that ME is a psychological problem. When the only thing that seems to be happening is some placebo responses and vulnerable patients giving in to the pressure to downplay their own problems.
In reality the problem is that ME has been assigned a low status in medicine and that's why such practices can continue. With more respected diseases it would never be permitted to mistreat patients.
Maybe that would be an angle to explore in a documentary. Perhaps not with open accusation of fraud.
In the asthma study they recorded substantial improvements in breathing even in patients treated with placebos. The objectively measured breathing ability only changed in the medication group.
In ME we see something similar: improvement in self-reported fatigue and other subjective outcomes but no objective improvement. And the self-reported outcomes then inform the alleged perpetuating factors of ME, which appears to be just a convoluted way of saying that patients that are told to view their fatigue as normal, and not to focus on fatigue because that will make it worse, and similar things, will after several such therapy sessions rate their fatigue as less severe.
And the CBT people now tend to avoid using objective outcomes, or hide the results, or try to reposition fatigue as a psychological thing detached from real world functioning.
This is fraud in plain daylight.
And as result of this lots of people believe that ME is a psychological problem. When the only thing that seems to be happening is some placebo responses and vulnerable patients giving in to the pressure to downplay their own problems.
In reality the problem is that ME has been assigned a low status in medicine and that's why such practices can continue. With more respected diseases it would never be permitted to mistreat patients.
Maybe that would be an angle to explore in a documentary. Perhaps not with open accusation of fraud.
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InitialConditions
Senior Member (Voting Rights)
Thanks for all your comments so far. Remember this is just a (potential) story pitch, and I imagine that generally once a story is pitched via email (for example) that person is not involved in whatever is produced. So I have not considered potential interviewees etc, because it's highly unlikely we would have a say in that, unless it was stipulated that we had some sort of creative control over the programme or if we provided representatives to work closely with a production company. I realise this is what is making people wary, and that's ok! Me too. That's why I wanted to discuss things here. I am not set on doing anything concrete at this point.
Also, I am well aware of the low probability (a few percent?) that anything would come from this.
Also, I am well aware of the low probability (a few percent?) that anything would come from this.
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Jonathan Edwards
Senior Member (Voting Rights)
It was June 2017. I was interviewed on June 14th.
The person initially interested was a relatively junior BBC journalist I think with a family member or friend with ME. She seemed to be quite keen on Willy Weir's idea of ME being due to a retrovirus. Michael Buchanan is a heavyweight who was to lead the piece. The final 'no' came with the feedback from a statistician but I had already picked up that Buchanan seemed uncertain and that at the time our case had no visible backup and may also have looked quite fragmented. It would have been good if the journalist picked up just on the logic and evidence of the case but that is a big ask, especially if people are taking different positions.
Things are certainly very different now in that our case is official policy since NICE 2021. But other things have shifted the context. In 2017 it made sense to say that the NHS was letting PWME down. Now that pales into insignificance in comparison to the way the NHS is letting everybody down.
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Shadrach Loom
Senior Member (Voting Rights)
Yes. Every single aspect of medicine has a horror story just waiting for a prize winning expose, these days. Why revisit the boring old ME spats?
Binkie4
Senior Member (Voting Rights)
Unfortunately I think it's hugely risky to go for a programme even if an interested editor could be found, solely through the lens of ME. The BPS group have made ME their own and we are not nearly powerful enough to take on Wessely currently who seems to charm all he meets apart from the Countess of Mar.
Look how difficult it was to get the new Nice guidelines confirmed and how tricky it looked for a while at the end when significant people didn't like what it said. Look how Cochrane fails to be taken down against all reasoning.
With long covid added, it might be a different matter. There are groups of people suffering from that, like the doctors in the recent report, who have never expected to have their income taken away and to live on benefits, or to lose many things that they valued in life.
A bit differently because it's not virus linked, there are also the vaccine injured. At some point this story is going to break. There are enormous numbers out there who are organising and I have been surprised that in the UK, so little has yet been said or written. Post vaccine injury in some patients is being identified as long covid. In Germany , the causes of ME, long covid and post vacc injury are already being linked. There was a protest outside the German Parliament yesterday see https://www.s4me.info/threads/rare-link-between-coronavirus-vaccines-and-long-covid–like-illness-starts-to-gain-acceptance.33990/
This just sounds negative but I think we should look out for opportunities where we might make an impact, but unfortunately I don't think this could be solely through ME.
Look how difficult it was to get the new Nice guidelines confirmed and how tricky it looked for a while at the end when significant people didn't like what it said. Look how Cochrane fails to be taken down against all reasoning.
With long covid added, it might be a different matter. There are groups of people suffering from that, like the doctors in the recent report, who have never expected to have their income taken away and to live on benefits, or to lose many things that they valued in life.
A bit differently because it's not virus linked, there are also the vaccine injured. At some point this story is going to break. There are enormous numbers out there who are organising and I have been surprised that in the UK, so little has yet been said or written. Post vaccine injury in some patients is being identified as long covid. In Germany , the causes of ME, long covid and post vacc injury are already being linked. There was a protest outside the German Parliament yesterday see https://www.s4me.info/threads/rare-link-between-coronavirus-vaccines-and-long-covid–like-illness-starts-to-gain-acceptance.33990/
This just sounds negative but I think we should look out for opportunities where we might make an impact, but unfortunately I don't think this could be solely through ME.
