Guardian Article on NICE pause

[Wonko]

It would strongly suggest that they have a copy of the final embargoed guideline.

 

[Dx Revision Watch]

"The new guidance seen by the guardian..."

Does that indicate that the final version was released to journalists, as usual? Or has it been obtained elsewhere?

This morning I emailed NICE to ask if they would clarify whether a press release had already been sent out, prior to the announcement on 17th August that release of the final guideline was now "paused".

 

[Ariel]

"Characterized by debilitating pain and fatigue" (from the piece) is not true - has anyone specifically engaged Grover on this point?

 

[Dx Revision Watch]

It would strongly suggest that they have a copy of the final embargoed guideline.

For the launch of the 2007 CG53 Guideline, NICE posted a copy of the four page press release on its website on 22 August. The guideline was published on 22 August. (The PDF of the press release had been created on 21/08/2007.)

On Page 4 of the press release, in the "Notes to Editors", it says:

Notes to Editors

About the guidance

1.The guidance is available at http://www.nice.org.uk/CG53 (from 22 August 2007)​

It's unclear whether an embargoed copy of the full guideline was provided to journalists in 2007 or just a four page summary, quotes and Notes to Editors.

I've attached a PDF of the 2007 press release.

 

[Dx Revision Watch]

For the launch of the 2007 CG53 Guideline, NICE posted a copy of the four page press release on its website on 22 August. The guideline was published on 22 August. (The PDF of the press release had been created on 21/08/2007.)...

To clarify, I'm not suggesting that the 2007 press release (for which the PDF was created on 21/08/2007) would have gone out the day before the guideline publication date. The website version of the press release may have been edited on 21/08/2007 to remove the embargo notice; the version for journalists may have been sent out more than one day before the guideline was scheduled for release, for example, on Friday 17th or Monday 20th August 2007, ahead of the publication date of Wednesday 22nd.

 

[Solstice]

Does the Guardian not have a comment section below their articles by the way? I thought they did, but can't find it.

 

[Tia]

Does the Guardian not have a comment section below their articles by the way? I thought they did, but can't find it.

For some articles, not all. Not on this one.

 

[Ariel]

For some articles, not all. Not on this one.

May be for the best given some of the usual comments

 

[Dx Revision Watch]

The headline should not be that patients are upset but that certain interest groups are sabotaging a NICE guideline that was three years in the making and that said that current treatments are not effective and potentially harmful.

ME Association on Facebook:

https://www.facebook.com/meassociation

ME Association
The headline in the paper version has now been changed/corrected to >> ME guidance: 250,000 patients in limbo as NICE delays advice... Dr CS MEA


ME Association
I am going to go back to Natalie at The Guardian later today and suggest that she has a look at the discussion here on MEA Facebook on her article - in particular the very valid point that people are making about PEM. Dr CS MEA

 

[rvallee]

At the heart of the dispute is the Pace trial, which evaluated the effectiveness of interventions for ME, including Get and CBT. The results, published in 2011, suggested that both approaches were moderately beneficial for some ME patients, based on patient reports.

Well that's simply false. Hundreds of trials were reviewed. Just because PACE is the most expensive doesn't give it a special status, it's literally one of hundreds. This is obviously inserted to deflect, to make everything about PACE, even though it's a tiny part of this. What nonsense from the Guardian.

The medical research bodies charged with overseeing the trial and its funding had suggested that the burden of patient assessment was too high and, as a consequence, the cumbersome activity trackers of the era were dropped.

Cumbersome? Says who? They were used at the start of the trial without much problem. Way to insert invalid framing into the story.

The crux of the row is the argument – levelled by campaigners – that advocating for these two behavioural approaches means ME has been relegated to a psychological problem, and that has thwarted the investigation of its potential biological origins.

That's not just "levelled by campaigners", we are patients, not campaigners, and it's a basic fact, easy to fact check. What a weak journalism effort.

Peter White, a volunteer with the charity group Forward ME, said funding was necessary to investigate the biological reasons behind ME, but much funding was focused on psychological research because people did not know where to begin on the biology. Yet this was because nobody had really ever looked into it, he said, creating a vicious cycle.

Here Peter literally did the reporter's job, all they had to do is check this basic fact.

Edwards agreed that nobody really had a clue where to start when it came to research. “But all this focus on CBT and exercise therapy has diverted attention from doing something useful for the patients,” he said.

And again, all that needed is the most minimal effort at fact-checking, that numerous research proposals have been rejected explicitly on that basis and that there is not a single tenured academic position anywhere in the world for that same reason.

Another garbage article from the G. What a lazy excuse for a news publisher.

 

[Tia]

View attachment 14901

I actually think this is a big improvement on previous guardian articles. Not perfect but also not terrible and perhaps moving in the right direction.

 

[rvallee]

View attachment 14901

That's a better headline, but putting Sharpe's quote there is really weird, his whole thing is that he disputes the patients' reports and falsely attributes it to his own imaginary cause, his whole thing is nothing but the fact that he rejects that our testimony is worthless and should be replaced by his own.

It's also a really bad quote, almost like a bad movie quote: "If I die, I die", said the rugged Rambo-type hero.

 

[Barry]

View attachment 14901

Which even if that is true, simply highlights that things have moved on a lot from 2005'ish, and reinforces why the new 2021 guideline is so desperately needed.




If you, as a professor of psychiatry and expert in clinical trials, cannot answer that objectively, then what hope is there for you. I would not mind betting there are some physical conditions you could get self report measures from patients saying they were feeling a little better, and then dropping dead the next day, the latter being a more objective measure.

 

[Jonathan Edwards]

That's a better headline, but putting Sharpe's quote there is really weird,

I think it is simply that Grover wants to centre the piece around the idea of 'lived experience'. So anyone who stresses believing the patients must be on the right side.

 

[DigitalDrifter]

“Why is it then argued that we should believe what the patient says about their symptoms to make the diagnosis – but not believe what they say about their symptoms after treatment? I think there’s a paradox there, and I think if you believe the patient, you believe the patient.”

Because CBT teaches them to lie about improvement, "What you think is what you feel".

The campaigners are actually patients and their carers and they do no object to behavioural approaches because it would mean that ME is a psychological problem. They mostly do so because many became worse after trying these treatments.

I have to disagree, anything that frames ME as psychological does more harm than good. Psychologized physical symptoms are viewed as inconsequential. This conceptualization can do a lot of harm to ME patients. Even if CBT made my condition 20% better to start off with, I would be worse off over all from the damage caused by lack of consideration & support that psychologizing causes. There is also the issue of lack of research funding that results from viewing the illness as psychological.

 

[Hoopoe]

I think it can be psychologically damaging to be told that the origin of symptoms is psychological or behavioural when that is not true. It sets the person up for guaranteed failure, blame and self-blame. It's not empowering or positive. It promotes magical thinking and belief in mysterious invisible forces that allegedly govern one's life and that can only be understood by an expert that acts as guide. It's a harmful superstition.

The unwillingness of the CBT/GET proponents to allow the patient community to shape their own healthcare is patronizing and tells us everything we need to know about their opinion of patients.

 

[Ariel]

I think it's psychologically damaging to be told that the origin of symptoms is psychological or behavioural when that is not true.

I think this is psychological abuse. I understand why we don't talk about abuse more as people think it's over the top etc and so we can't talk about it, but it's abuse nonetheless.

 

[Hoopoe]

People like Chalder who spend most of their time making up stories about how patients are so psychologically defective that it leads to disease have serious issues themselves. A normal person wouldn't be able to bring themselves to lie so much while being told they're causing harm.

How can a person look at a 18000 signatures strong petition in support of guidelines that oppose CBT/GET and decide that "patients should be listened to" is a great line to use while fighting to keep the treatments? Or believe that all these people cannot be right and must suffer from "dualistic thinking" and can safely be ignored?

 

[anniekim]

Peter White, a volunteer with the charity group Forward ME, sa

Take it not psychiatrist Prof Peter White, now retired, of Barts?

 

[dave30th]

Given what we know of how the clinics work (with lack of follow up) along with trial results it seems to be a very empty claim.

especially given the pubished reports based on clinic data seem to be scientifically very questionable, like the Psych Medicine pro-CBT piece that included Wessely and Chalder as co-authors.