What we're not being told about ME - UnHerd (Tom Chivers)

3 days is rubbish.

He's had well over 13 billion years to prepare.

The fact that he couldn't even be bothered to exist for most of it, and spent most of the rest being asleep, or being 5, or doing totally irrelevant things, other than working on this, was his choice, and hardly a valid excuse.

 

He'd only have make the effort to get to grips with it properly once, then he could have a string of articles out of it.

Precisely.

 

It is, of course, but NICE had already done the work for him. In great detail and with not inconsiderable expertise.

All he needs to assess is how likely it is that the NICE committee is made up of gullible idiots, and whether the objectors are actually presenting any scientific arguments. I'd be surprised if that took an experienced journalist three days.

 

Surely he'd only really need to read the draft, though. The story is about the response to it by a group of doctors and researchers, who're conspicuously few in number and employing familiar and not very sophisticated tactics. That alone ought to raise at least one eyebrow.

 

This. I've been thinking this very thing as we've all been going on about NICE guidelines. While it sounds like NICE have done the right thing with regard to ME/CFS, they clearly did a piss poor job when it came to chronic pain.

 

But it presumably wasn't the result of them being bullied into submission by "action" carried out by "militant patients", and it was the result of a review of evidence. The evidence might be hopelessly weak and the conclusions might be unreliable as a result, but it's still a review process.

Those challenging the draft ME guidelines aren't bothering with either process or evidence, and that's the core of the story.

 

So it seems like the two main reasons behind the royal colleges objections are the diagnostic criteria and the use of the GRADE system. Those are terrible reasons. There are good reasons behind requiring PEM, and even if PEM wasn't required, it's likely NICE would have came to the same or a similar conclusion, since NICE has other reasons for its conclusions and downgrading.

The other reason is even worse - they don't want to use GRADE because it's hard to get good evidence in "complex" conditions. Well, that's the entire reason GRADE was created - so the evidence supporting treatments is good, and you don't just get to lower your standards as you see fit. That argument is strongly reflective of the one Turner-Stokes made in the BMJ: https://www.bmj.com/content/371/bmj.m4774, which basically boiled down to "GRADE doesn't give us the conclusion we want in this condition, therefore it's inappropriate to use".

In my view this pretty well confirms that the motivations of the Royal Colleges are highly unscientific and contrary to evidence based medicine. The second argument about GRADE is just beyond ridiculous, and shows that the Royal Colleges do indeed want to abandon any semblence of evidence based medicine, and are actively working against it. And in large part they're basically getting away with it.

 

One size fits all. It appears the Other Side still wants to lump in conditions like IBS, Fibromyalgia, and who know what else with ME, which will dilute and obscure the picture of this distinct disease. Something that seems to be an aim of this group.

 

IMO the Other Side has not accepted correction from our community for a long time. If ever.

After all how could the lowly, crazy patients know what ails them?

 

Agreed. Tough to do for many different topics. One as difficult as this one takes some doing.

 

Rubbish. Requiring PEM is hardly 'new'.

The Canadian Consensus Criteria requires PEM and was published in 2003. The ICC also requires PEM and was first published in 2011. The IOM report was 2015.

A half-decent journalist could have discovered this in two minutes of searching the internet.