Guardian Article on NICE pause

https://www.theguardian.com/society...lanned-guidance-me-leaves-patients-distraught

Natalie Grover seems to be getting nearer to understanding the problem, even if still a little way away. Some reasonable quotes from me. Some from Sharpe and Chalder as well.

 

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.

 

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.

 

I have emailed Grover with the relevant points. I think I had made them when we had a long telephone call about a week ago, but I realise it takes time for things to sink in and I cannot expect to be treated as Moses with the tablets.

 

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.

 

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.

 

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.

 

I am quite happy for Chalder and her ilk to keep talking about mind-body dualism. It just shows that they have never got the hang of the idea of category errors.

 

I agree, wouldn't it be best to keep the media dialogue focused on this rather than getting lost in the PACE weeds?

 

I'm afraid I agree.