Guardian Article on NICE pause

Hmm. For me it fails at the first hurdle. Not a single mention of PEM and the consequences of activity.

And too much attention given to the irrelevant psych versus physical debate which is irrelevant in discussing GET.

And letting Sharpe get away unchalleged with a pile of misinformation, including this:
“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.”​
Why wasn't he challenged to explain why stops believing patients when thousands fill in surveys saying GET made them sicker?

I'm grateful to Jonathan Edwards for making some good points, but they are swamped by BPS misinformation.
 
I agree that the attempt at 'balance' betrays a lack of insight.
However, I think it is quite good to see Sharpe quoted saying something that all doctors will know is just silly - that you believe the patients when they say they are better (but not when they say they are worse). The irony will shine through.

Similarly Chalder's remarks will look very lame.

And the bit about the attometers being too arduous is another giveaway.

I think the people who need to be swayed at the moment are the silent majority of medics who might stand up to the RCP and say 'hang on, this all looks pretty dodgy to us', we don't see why NICE should be criticised.

It would be nice if Grover understood the psychology but she seems to have a focus on 'lived experience' which the psychologists are only too happy to manipulate.
 
Overall ok, but wish the journalist would focus a lot more on the over-diagnosis and wrong ones.

Why not challenge the quote from White: “we used the best criteria available at the time to recruit patients”. Is that really good enough today? Does that make Pace right for eternity, and does that mean that you’re not supposed to admit the many wrong diagnosis, the lack of quality and so on? Remarkable. Eminence-based bs forever.
 
I find it unfortunate that the debate shifts to whether ME is psychological or physical. Which ends in Chalder saying: "This kind of dualistic thinking – it’s either psychological or physical – is not particularly helpful..."

The title and headline are also terribly:

"Withdrawal of planned guidance on ME upsets patients
Advocating for behavioural approaches means condition has been relegated to a psychological problem, campaigners say."​

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.
 
Pace investigators have repeatedly defended the trial’s design and results. Michael Sharpe, a professor of psychological medicine at Oxford University and a principal investigator of the trial, said they used the best criteria available at the time to recruit patients.
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That would be your criteria, Prof, which wasn't even the best then, let alone now.

Did you inform Natalie Grover of that relevant conflict of interest?

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.
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Well, you claimed it was the patient group (AfME) involved in that trial that asked for that, but then you told a different story to the trial oversight committee (that it was because actigraphy had not given a positive result in other trials of CBT – a bizarre and illegitimate reason in itself).

That paragraph is just flatly untrue.

EDIT: @Lucibee has a good summary of that story.

Given there is no biological marker that can point to a definite ME diagnosis,...
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Nor any subjective marker.

While some patients do not benefit from these therapies, there are others who do, said Trudie Chalder, a professor of cognitive behavioural psychotherapy at King’s College London and another chief investigator of the Pace trial, who has been delivering CBT therapy to such patients for decades.
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For which, after decades of its use and testing, there is still no reliable evidence of efficacy nor safety.

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.
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No, the problem is they don't work, and do harm.

And how about using the term 'critics' instead of the loaded term 'campaigners'?

Both Pace investigators interviewed by the Guardian indicated they did not believe ME was a purely psychological condition, however.
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Only in the sense that they claim it is a form of conversion disorder, involving a behavioural component.

Chalder, the CBT practitioner, said it was unhelpful to see the debate in black and white.

“This kind of dualistic thinking – it’s either psychological or physical – is not particularly helpful when you think about any disease.
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It is when is comes to causation, and hence treatment.
 
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Chalder, the CBT practitioner, said it was unhelpful to see the debate in black and white.

“This kind of dualistic thinking – it’s either psychological or physical – is not particularly helpful when you think about any disease. There are going to be a number of different things that are contributing to symptoms … and the same would be said for ME,” she said.
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Someone that expects to cure an illness with psychotherapy sees the illness as 100% psychological.
 
Headline in hard copy much better.

ME guidance ( in red) 250,000 patients in limbo as Nice delays advice.


edit: no mention of Chalder. Sources- Jonathan Edwards, Charles Shepherd, Michael Sharpe
edit2: haven't done more than scan the thread but hard copy looks very different. Still unhelpful remarks by Sharpe about believing patients but decent attempt at coverage. Decode ME even gets a mention at the end.
edit3: full article in post #59.
 
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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.
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Well, you claimed it was the patient group (AfME) involved in that trial that asked for that,...
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Not "medical research bodies".

Given there is no biological marker that can point to a definite ME diagnosis,...
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Nor any subjective marker.
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Furthermore, that situation is due largely to the likes of Sharpe and Chalder for two reasons:

First, by using such broad inclusive criteria in their studies leading to the mixing of several different patient groups.

Second, by discouraging and even blocking adequate biological research, and refusing to either use objective measures or giving them due weight, that might disprove their interpretation.
 
We know Sharpe and Chalder will talk about dualism, so as long as charities keep bringing it up in their press releases, too, it will remain the primary 'debate' in the press.

Both sides need to stop talking about it, but while it remains advantageous for one side to repeat that argument, the other side at least needs to wise up and shut up.
 
Nobody really seems to understand the ramifications of how the Royal Colleges stopped an independent evidence based guideline after already being given a say in the process. That's not how evidence based medicine is supposed to work.
 
adambeyoncelowe said:
We know Sharpe and Chalder will talk about dualism, so as long as charities keep bringing it up in their press releases, too, it will remain the primary 'debate' in the press.

Both sides need to stop talking about it, but while it remains advantageous for one side to repeat that argument, the other side at least needs to wise up and shut up.
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This.

It is very demanding to listen to Chalder, not to interact when she puts words that are untrue in patients mouths over and over again. Put a penny in her back, and dualistic blaablaablaa comes out. Best to let her speak to herself. It’s circular and brings absolutely nothing of value.
 
petrichor said:
Nobody really seems to understand the ramifications of how the Royal Colleges stopped an independent evidence based guideline after already being given a say in the process. That's not how evidence based medicine is supposed to work.
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I agree, wouldn't it be best to keep the media dialogue focused on this rather than getting lost in the PACE weeds?
 
It starts badly by suggesting that NICE have withdrawn the guidelines which is not true they are paused. So the whole headline for the article is misleading. Also the subheadline picks up on psycological treatments and issues which is again misleading.

Withdrawal of planned guidance on ME upsets patients
Advocating for behavioural approaches means condition has been relegated to a psychological problem, campaigners say
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But what causes the disease remains unclear and consequently no specific treatment exists, although graded exercise therapy (Get) and cognitive behavioural therapy (CBT) have been used in an attempt to manage symptoms.
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Another misleading comment these are sold by Sharpe and White as curative not to manage symptoms.
 
Trish said:
Hmm. For me it fails at the first hurdle. Not a single mention of PEM and the consequences of activity.

And too much attention given to the irrelevant psych versus physical debate which is irrelevant in discussing GET.

And letting Sharpe get away unchalleged with a pile of misinformation, including this:
“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.”​
Why wasn't he challenged to explain why stops believing patients when thousands fill in surveys saying GET made them sicker?

I'm grateful to Jonathan Edwards for making some good points, but they are swamped by BPS misinformation.
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I'm afraid I agree.
 
Sharpe said:
“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.”
Click to expand...

A good quote from Sharpe as it suggests that he isn't doesn't have a clule about the potential for reporting bias.
 
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