Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

lunarainbows said:
And there was a story by a girl called Fiona from the UK I think who had used the app and had been cured of M.E. She gave a 45 minute interview in the app which I listened to and it was on their fb pages too.
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www dot curablehealth.com/podcast/fiona-recovery-story-chronic-fatigue-syndrome

I haven't listened to the interview and there is no transcript, so I have only read what was written. From a first glance, it is notable that there is no discussion of whether she is in remission and what she has been able to achieve in remission that she wasn't capable of doing before. I have travelled while ill, it is hard but do-able. So a picture of her in Egypt on its own doesn't demonstrate that she is in remission.

It is also notable that her first problem was pain, and her initial description sounds atypical of most ME patients. But this may be that they want the testimonial to be applicable to patients with a wider range of illnesses, so I am reluctant to conclude anything from this observation.

The problem with testimonials (it doesn't matter what it is for), is that there is no verification - I have frequently seen testimonials of people claiming a particular product is great, and has led to great improvement, when the person who wrote that testimonial is still quite ill.
 
rvallee said:
So going back to the protocol

meant to compare standard GP care (which is nothing) vs. standard GP care + CBT. If it's described as a controlled trial (unlike PACE), then I guess the SMC (nothing) is supposed to be the control. But the control is usually a placebo and the whole point of CBT for CFS is a placebo effect so it tests one placebo against a different placebo without acknowledging either is a placebo but referencing it as controlled (but not specifically placebo-controlled so then I don't know what the "control" is supposed to be).

Since the standard of GP care is nothing I guess they did actually test what it does correctly but obviously this was not the point by any reasonable understanding of what medical research is about. And this is basically the 10th or so almost identical trial that doesn't actually test anything meaningful. As it's described it's half a PACE but even more useless.

All the funding that was wasted on those trials should be paid back in full. This is simply not serious work.
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Surely standard medical care ranges from ignoring you, to sending you for CBT and GET or sectioning you?

So what are they measuring it against?
 
Trish said:
@dave30th,. @Jonathan Edwards, @Keela Too, @adambeyoncelowe, can any of you help with this?
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David may be the one person who is entitled to do something here, and it may be late in the day anyway.

My understanding of the committee is that it is a bit like a coroner's court with a jury. The coroner is the chair, Peter Barry. He can call expert witnesses like me but I am only allowed to talk about what I have been asked to advise on. The committee members are like the jury. They do not submit evidence and are supposed to provide an impartial opinion on evidence furnished by a tech team who are the forensics experts (supposed to be). Any evidence needs to be submitted to the NICE technician team.

Having said that there is no harm in everyone involved being well informed.
 
dave30th said:
Hi, I just saw this--yes, I'm interested. I don't remember getting a Facebook message about this but certainly I miss things.
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Hi I’m sorry for my late reply, I think I missed this message due to all the notifications that come up - I’ll send you a PM. If you Can tell me what email address to send to, I’ll send over all the documents (handbook etc) and hopefully you can find all the holes in them!
 
fossil said:
Thanks @lunarainbows, I have started a thread about apps here;

https://www.s4me.info/threads/will-...-critical-look-at-bps-based-phone-apps.10693/
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Thanks.
Jonathan Edwards said:
David may be the one person who is entitled to do something here, and it may be late in the day anyway.

My understanding of the committee is that it is a bit like a coroner's court with a jury. The coroner is the chair, Peter Barry. He can call expert witnesses like me but I am only allowed to talk about what I have been asked to advise on. The committee members are like the jury. They do not submit evidence and are supposed to provide an impartial opinion on evidence furnished by a tech team who are the forensics experts (supposed to be). Any evidence needs to be submitted to the NICE technician team.

Having said that there is no harm in everyone involved being well informed.
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In this analogy, who are the NICE technician team?
 
Jonathan Edwards said:
They would be the police or the forensic pathologist giving evidence. They will have rules of what evidence to collect. A lot could depend on how well they collect and present that evidence.
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Ok I just realised I didn’t word my question well at all! I mean, which people make up the NICE technical team - what are their names? We have the names of the the committee but not for the technical team.
 
lunarainbows said:
Ok I just realised I didn’t word my question well at all! I mean, which people make up the NICE technical team - what are their names? We have the names of the the committee but not for the technical team.
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No idea but I have met two of them and they are nice earnest young people who may know very little about what makes evidence valid but will try hard to follow their rules.
 
Sarah94 said:
Is that a good thing or a bad thing?
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I don't honestly think it matters much. There are people on the committee who know enough to move the agenda on to what matters. The only reasonable analysis from the techies would be that there is no evidence of any value for effective treatments. People on the committee know that and are not going to be influenced by the techies - who in effect are redundant.
 
strategist said:
Do you think that CBT/GET proponents know this treatment doesn't work but pretend to honestly believe that it's effective?
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Considering the promotion of the LP by some of the PACE fellows following the SMILE trial, especially of course Chalder herself, I think they genuinely don't care about the substance of how to get people out of "unhelpful illness beliefs". I don't think they have much attachment to CBT and GET themselves. The biggest tell is the complete lack of rigor in assessing their efficacy. The details seem truly irrelevant as long as they can engineer the illusion of success.

In the few glimpses of discussion among themselves that I saw over the years, they seem to think that they are on the verge of figuring out the right recipe, if they get the details just right. They are wholly uninterested in the outcome of what they have unleashed, I think they genuinely believe we are only mildly inconvenienced by mood "issues" so it doesn't really matter. This is revealed by how often we are mocked as "complaining" about being tired (which is wrong, but whatever) yet always have energy to use social media, write letters and make FOI requests. Sharpe did that mistake a few times. The ugly truths of their feelings doesn't always come true but it mostly amounts to the Rod Liddle column. About the same as some people feel with "junkies". Some pity, but mostly contempt at a self-inflicted problem.

There are still people promoting phrenology after all. Beliefs are weird. By definition they are not meant to be rational. The failure here is in a system that is promoting and protecting harmful pseudoscience. People with fringe beliefs exist everywhere, the problem is when institutions that should guard against them are instead enabling them.
 
Michiel Tack said:
I'm confident that GET/CBT proponents believe that these treatments work. I see no reason to think otherwise.
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I prefer not to make confident statements about the contents of the minds of people whose thinking I cannot understand. Moreover, I think there is a much wider spectrum of belief amongst those who appear as 'proponents' than it might at first appear.
 
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