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

I've already written to them several times, and then found out apparently a very good Panorama programme was made in the last two years, but the SMC blocked its transmission (rumours of it all getting ugly), so it has been archived. There's no point in asking them to make another - the abuses in the system need addressing first.

 

That’s an interesting story. I don’t understand how that could all have happened without more people in the ME patient and research communities knowing about it. Nixing a suggestion is one thing, blocking transmission of a programme in the can is quite another, which you’d expect to make a lot of waves.

 

Unfortunately I have no more information, just heard via a friend. Must have been a good programme though!

 

I agree. I highly doubt that a recent Panorama episode was made without anyone in the UK world of ME knowing about it.

Please don't take my skepticism personally. Happy to rescind it on any evidence of said programme!

 

Are you able to ask your friend for further details i.e., how they know about said programme?

 

Thanks for trying to get the story across.

 

I tried for years to get C4news and Dispatches interested. But they 'couldn't see what the problem was with the PACE trial'. I had direct contact with the Health and Social Care editor on C4 news and the ITN producer (thro an old acquaintance who also presents for C4 who I now cannot contact anymore).
It started amicable enough and in addition to a couple of bits of info I also gave them JE as a contact (with his permission). But after a while they just ignored me.
Incredibly frustrating.

 

That’s presumably quite specific to doctors, though. And maybe cops and teachers, who also caught covid through imposed mingling with the sick.

There would be other LC victims who would want the same thing as us: biomarkers, recognition (especially concerning benefits), research funding.

And some of those people would have a better celebrity factor than grumpy pwME who haven’t left their houses in years.

 

Maybe the right angle here would be the scandalous grand promises as such. It was sold as a panacea, fully effective, cost-effective, literally sounded too good to be true. And it's a complete dud. Billions were wasted, millions (counting elsewhere around the world) were experimented on. They promised the Moon, and still can't even deliver a pebble.

If there is to be a working angle here I'd say it's this one. There never was any actual promise for this treatment model, it was all a lie. People don't like being lied to, especially when it costs them money. And the lies, and the losses, will continue until they are brought to light. At this point with Long Covid it's affecting the broader economy and so the lies are especially visible. If their stuff worked, if as promised it's not the physiology of infections but the behavioral response to it, there wouldn't even be any of the major rises in illness, morbidity and other issues we are seeing from COVID. The truth is that infections, even mild ones, can have huge consequences on health, independent of acute injury. This is the truth that this egregious lie covered up.

Regardless of the nature of the illness, or what they believe about it, they sold this pseudoscience without any actual evidence. The only angle perhaps they'd have is that they never said anything about a cure, since they don't even believe there's anything wrong. But this is what they sold nonetheless, as part of the Big Lie was their infinite belief that there is indeed literally nothing physiologically wrong to chronic illness.

Edit: on the issue of a "cure", actually the mewling over removing exactly that language in the NICE guidelines makes it official, that they really always meant it to be a cure, but facts would have to matter here for this to be significant

 

I think this might be a winner in terms of getting a clear message across - and being the enabler/driver for decision makers to take action.

Getting out there the knowledge about just how horrifying expensive it is to society and individuals the cost (£ $) of inaction. The inertia aided by the poor quality research methods / fraudulent presentation of results along with opting to not publish objective evidence and so on, it'll be the horrifying numbers that probably gain traction ultimately.

For example, an effective disease modifying treatment that helped reduce symptoms even a bit, could be demonstrated to improve functioning objectively and was effective enough to get some patients back to, say, part-time work would be such a boost to the economy the return on investment would be a straightforward sell in any business or government.

The economic impact - the £$billions lost across the globe are staggering - even ore so now with Long Covid.

Would taking an economic angle, which then brings in the other issues, be a way forward focus for a documentary? I have pondered why, if the BPS crowds model was so effective, they were not pushing how effective they were economically. As they are not, I suspect 'they' know well that they cannot prove that BPS methods are not making a difference. And this is backed up by PACE economic findings. And FINE too (as this was a null result).

 

I did some simple calculations once and the economic losses caused by ME/CFS are so vast that even achieving a few percent reduction after 10 years of significant investment in research would very quickly pay itself.

 

Interesting background. I didn't know that BBC commissioned a statistician to review PACE. Without knowing more details about the statistician's report, it's difficult to judge its scope or accuracy.

As someone who was closely involved in the statistical reanalysis of PACE FOIA dataset, I can say that I didn't notice any obvious statistical errors or fraud in the Lancet and Psychological Medicine papers. So, if this statistician was merely asked to replicate the analyses to check for accuracy, they came up with nothing untoward. The issues with PACE are conceptual, not so much statistical. Outcome switching midway through the trial resulted in markedly incorrect outcomes being reported, all in the desired/hypothesised direction. So, unless the statistician read the original protocol and thought about the poor justification for changing recovery criteria (e.g. the inaccurate derivation of normal range on the SF-36), then they wouldn't notice any of the serious problems with this trial.

The second issue is the huge discrepancy between subjective and objective outcomes. Patients reported improvement on self-report scales but on objective outcomes like being able to move and employment there was no effect. Again, this is not a statistical issue. These are conceptual issues with how the data have been interpreted and abused over the years to imply that recovery is common when it's actually uncommon. This is a serious issue in psychiatry (not just in ME/CFS psychosomatic research but ALL psych conditions) where trials use these sorts of scales as the primary outcome, ignoring real-world outcomes like functional capacity. I see this sort of thing every day. The patient drops out of the workforce and goes on disability or is financially supported by the spouse, this reduces their stress levels (no more struggling to get to work, performance issues etc.) and they consider themselves subjectively "improved" even though, objectively speaking, they are functioning at a lower level than at baseline.

 

what study is this? I haven't heard about it. Do you have a link?

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154208/

It's very relevant to the CBT studies in ME. It compared the effect of medication, placebo, sham acupuncture and no intervention on subjective and objective outcomes in asthma. The results are similar to what we see in CBT for ME studies.

 

Right, Buchanan. I've just checked my e-mails, and it was indeed six years ago. I didn't remember that Jonathan had actually been interviewed after our meeting. Buchanan is still at BBC. So is Helene Daouphars, the French journalist working at BBC who initially contacted me. I'll write them and cc Jo. Perhaps I can gin up some renewed interest on their part with the long Covid situation. The thumbs down from the statistician should be irrelevant, given the NICE decision to rescind its recommendations--the claim that PACE and the other studies are fucked no longer rests on our say-so but has been authoritatively confirmed by NICE.

ADDED: I have sent a message to Buchanan and Daouphars. Not much hope for a response, but we shall see.