United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

The science on CBT and GET is not uncertain; it shows that the hypothesis they are based on is completely wrong and that the treatments don't work.

It is the biomedical science which is uncertain but an injection of research funds, or even the money being channelled to more CBT and GET research being diverted back, would make a difference.

 

Thanks for sending the whole Hammond piece. Yes, it is dreadful. Drivel dressed up as 'common sense'.

This is just what is problematic - appearing to provide everything patients might want but in fact providing untested treatment that probably achieves nothing.

At least he seems to agree that GET is not what is needed. But so he uses get.

 

"They develop long-term debilitating and persistent fatigue and a host of other unpleasant symptoms and signs that can make a single label inadequate. These can include [long list of symptoms]..."

If the "single label" is "Fatigue" or "Chronic fatigue" well yes; but otherwise this smacks of that lady TV doctor (was it Dr Sarah Jarvis?) who said some years ago re paediatric ME, CFS: We don't need to give it a label and tie it up in a big bow (or words to that effect).

 

He says: '"Graded exercise therapy" - one of Nice's sticking points - as described by some patients may sound awful, but it's not something I recognise.'

which sounds as though he's not receptive to the fact that some patients [in clinical settings other than his own] have suffered as a result of GET.

 

Absolutely, because that is what the 'pause' is supposedly to facilitate, which is wrong on every level.

 

And this in itself is an argument against the kind of "individualized" one size fits none guff he's going on about.

If he refers to the treatment he provides as GET, even though it might not be, and his patient encourages another to accept an offer of GET at another clinic and that other patient is harmed.....

It is still harm.

Or if one of his patients refuses information and assistance in learning about pacing because he insists on calling it GET and they've heard about GET from other people.... that's harm.

If by some magic an new treatment pharmalogical or otherwise becomes available how could NICE possibly make an informed decision about whether it's cost effective or not when comparing it to the existing treatments if some clinics are calling the ssme treatment by different names and different treatment by the same name?

Assuming the clinics have bothered to do any of the basic record keeping in the first place, of course.

 

https://twitter.com/user/status/1429415666176729090


https://twitter.com/user/status/1429390768830140419

 

'with a huge range of causation'

So Dr Hammond can now divine the cause of each patient's illness and base treatment on it?
Goodness knows what the bit about diagnostic tests was about. He seemed to miss the point that there was certainty about treatments not having a useful effect.

 

If he doesn’t follow the research and he doesn’t feel the need to adhere to the NICE guidelines, what does he base his approach to “treatment” on? Intuition? Divine inspiration? What his boss tells him? Phil Parker’s WhatsApp group?

 

He may have meant a diagnostic criteria. NICE didn't recommend a specific diagnostic criteria, but just recommended looking for certain key symptoms

 

I think that tweet from Dr Phil looks like an attempt at humour in response to the ‘science is certain’ remark from an ME patient, which he’s wilfully taken out of the CBT/GET doesn’t work context it was relating to. He’s ironically pointing out that if the ‘science is certain,’ then where is the diagnostic test; furthermore, patients with complex illnesses better be grateful for what they’re given otherwise they might be left without any support whatsoever.

 

I think he was misunderstanding a response to his comment that the science was uncertain. He thought somebody was suggesting that the science of ME was sorted. What is sorted is the science of CBT and GET - they don't work.

Edit: what hinterland said!

 

This is very ironic considering that he and the others do not use the ones available but just look at fatigue.