Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

As noted in some discussions on the forum, many of us feel that a Panorama-style programme on the PACE trial and the wider story of ME/CFS is much warranted and overdue. There are people on Twitter who feel the same.

I have decided that it would be good to contact Panorama (and potientially other similar current affairs programmes).

I understand that when this has previously come up in discussion, it is in the context of the PACE trial. However, the wider story—encompassing more recent developments such as the NICE guideline changes and role-out of the new guideline—is probably more fitting to a Panorama-style programme.

As far as I'm aware, there has not been a Panorama episode on ME/CFS since 2010 (https://www.bbc.co.uk/programmes/b00qs930).

What I propose is that we put together a short summary that will become the story suggestion that will be emailed to revelant producers. This will go to Panorama first, but the text could be adapted to approach other potential producers. The text should be succinct, accurate, and of course it has to stoke the interest of those reading it (these people likely get dozens of emails every week).

I have put together a first draft based on a proposal that has at its heart the NICE's decision to remove their previous recommendation for GET. This decision may prove a pivotal moment. It strikes at two key themes that would underlie any potential programme based on this proposal: bad science, and patient harm (within the NHS).

So, what I'm looking for is some comments on the first draft, which I will post directly below this. If you are proposing changes to the text, please be clear about that and suggest suitable replacement text for consideration.

If you want to comment generally on the story suggestion, then please do!

I am also happy to hear from people who may have contacts in TV here in the UK.

Finally, I would like to start the emails with two or three quotes (good, bad, or ugly) that really capture the topics covered by the story suggestion and the situation that we as patients have faced. Please send your suggestions. A good starting place for relevant quotes is this page: https://me-pedia.org/wiki/Individual_quotes

 

Text:

For several decades, the views and research of small but powerful group of British psychologists and psychiatrists have determined the medical care and treatment of the estimated 250,000 people in the UK living with the life-changing illness myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).

Their illness model—which posits that ME/CFS is a psychogenic illness perpetuated by false illness beliefs and physical deconditioning—and the proposed treatments—cognitive behavioural therapy (CBT) and graded exercise therapy (GET)—dominated clinical guidelines and swallowed up the majority of funding for research into the condition, despite strong objections from patients, charities, biomedical researchers, and expert clinicians.

The results of the £5million UK government and DWP funded PACE trial, published 2011 in the Lancet, seemed to confirm that both CBT and GET were effective treatments. However, in the years following, the trial’s design, results, and conclusions have been roundly criticised, and it has become one of the most controversial studies in the history of medicine.

In 2021, a decade after the PACE trials findings were published, the National Institute for Health and Care Excellence (NICE) performed a significant u-turn and removed the existing recommendation for GET based on a reassessment of the quality of evidence from PACE and similar studies, as well as evidence of patient harm. The new guideline also recommended that CBT should no longer be offered as a curative treatment. A series of Freedom of Information requests would show that prominent individuals at NHS England and the Royal College of Psychiatrists had tried unsuccessfully to interfere with the NICE process and have the guideline and its evidence review pulled right before publication.

Nearly two years on from the guideline publication, there is evidence that many NHS trusts are failing to adequately implement its recommendations, with many patients still unable to access specialist care that meets the guideline’s requirements. The NHS has failed to acknowledge patient harm and prominent proponents of the biopsychosocial model of ME/CFS—many of them now in senior roles within the NHS and the medical royal colleges—continue to defend their research and remain wedded to their beliefs about the nature of the illness and how it should be treated.

 

Sorry I not been able to read your entire post @InitialConditions but if they agreed to a Panaroma right now it would worry me deeply.

I long for an expose, of course i do, but given the historic (&current i think - i've seen nothing to indicate otherwise) bias of the BBC towards uncritical non-investigative reporting of the whole topic around ME, i would be very scared indeed that what we would ask for would not be what we'd get.

I think what we'd be likely to get is the very opposite of the truth. We'd get a programme which focussed on the 'activists harass researchers', 'patient activists pressure NICE to override the science & give patients what they want. We'd be lucky not to be painted as anti science militants etc etc etc

They will get Garner/Sharpe etc on the programme. It would be a catastrophe for us if it went badly.

So personally I'd, strongly, caution against it. I dont think we're ready & i think the consequences of it going wrong are far far worse than the status quo.

 

It is a worthy idea. We nearly got Newsnight interested in, I think, 2017, but I was interviewed the night of the Grenfell Tower fire and for whatever other reasons the momentum was lost. But as you say, a lot more has happened since.

A simple point is that the BPS illness model is not that ME is psychogenic but that it is 'biopsychosocial' and that the persistence of the illness is largely due to residual psychological factors. For me the key points here are:
1. There is still in fact nothing reliably established about the mechanism of ME. All is speculation.
2. The evidence from trials is now clear - that however valid any of the BPS speculation might be, the treatments are not cost effective and probably do not work. Specifically, they refute the BPS theory, in that even where there is reported symptomatic improvement, function does not improve - i.e. the patients' disability is not due to their perceptions of symptoms.

 

And I think JemPD may well be right. Some journalists are bright cookies, but the majority who make BBC documentaries are more into a fashionable story.

 

Thanks for your comments. Will definitely use this thread to discuss any potential concerns.

 

Thanks Jonathan. You've picked up on a few things that I've edited out and changed, so perhaps I need to edit them back in!

 

A documentary on long covid would have more legs. Better currency. Much more chance of finding afflicted celebrities - and hopefully doctors - who would crawl upstairs or don eyeshades for the cameras. ME’s BPS and PACE scandals would clearly be relevant, and could be covered off in five minutes, with less chance of backfiring in the way that @JemPD sensibly fears.

 

http://news.bbc.co.uk/2/hi/programmes/panorama/archive/506549.stm

http://news.bbc.co.uk/2/hi/programmes/panorama/archive/1158787.stm

 

@InitialConditions I think it's important to mention that the alleged positive effects may be an illusion of a biased clinical trial design. And how the systematic application of this kind of design has created misunderstanding of ME as a psychogenic illness, something reversible by a change in mental attitude, lifestyle changes, or even curable with placebo.

The typical tactic by the BPS people is trying to steer the discussion away from these issues and into philosophical territory where everything is relative and no objective truth exists, or into talk about mental health stigma, or talk about how they're victims of militants.

Their inability to show CBT/GET is more than a placebo is their weak spot and they need to be hit hard exactly there.

And as Jonathan says the results from the clinical trials suggest that even if there is a real treatment effect it's weak and doesn't reduce disability. Therefore this approach is a dead end.

 

I generally like Panorama, and I thought the recent doc on anti-depressant withdrawal was quite good. It had similar themes as what I'm proposing. However, this could be directed to Dispatches if people thought that was a better/less risky option.

 

Yes, this is the only other Panorama on ME, I believe. It's a good doc. I uploaded it here:

https://www.youtube.com/watch?v=SHhU1EA2vcI

 

Yes, I did consider this, but ultimately I want the story to be on ME because it really hasn't been told on primetime TV. The roll-out of the new NICE guideline links with long covid because many are being referred to ME clinics (and finding that they really have nothing to offer).

 

But that previous panorama was before the whole BPS 'mind body connection' business was fashionable, and, before it was BELOVED by seemingly all if not most.

They will turn it into 'is ME 'all in your head' & then the BPSers will come on & "explain" how we silly patients dont understand that they're not saying we imagining it, and somebody will say "its physical" & then they will say that it is dismissive of mental illness to say that its only real if its physical.

It will depend a great deal who is interviewd and since we're not in control of that i really do thing the danger isnt worth it. Garner is reading this getting so excited i'm sure. I feel sick just thinking about it.

If you can guarantee JE being on, and not being unhelpfully edited then great, otherwise.... i make you a request, respectfully & recognising your absolute right to ignore it, i just need to say it...

please dont play roulette with my life.

 

The whole programme is about children being pressured into psychological therapies. Sure, the BPS got a bit more organised after this, and became more prominent, but the philosophy behind how patients were treated was much the same in the late 90s as it was in the 2000s and 2010s, and in some cases the treatment was much harsher.