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

From Phil Hammond tweet
"I suggest that we publish the ⁦@NICEComms⁩ guidance on #MECFS & acknowledge that it’s okay to hold different opinions on the science, particularly when the science is very uncertain. We need more research into ME & Long Covid"
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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).
 
Jonathan Edwards said:
...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.
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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.
 
Dx Revision Watch said:
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.
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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.
 
Sly Saint said:
From Phil Hammond tweet
"I suggest that we publish the ⁦@NICEComms⁩ guidance on #MECFS & acknowledge that it’s okay to hold different opinions on the science, particularly when the science is very uncertain. We need more research into ME & Long Covid"
Click to expand...

Jonathan Edwards said:
Thanks for sending the whole Hammond piece. Yes, it is dreadful. Drivel dressed up as 'common sense'.
Click to expand...
I have read it too. It's full of 19th century homely advice like eat healthily and sleep hygiene, and individualised treatments by which he means presumably do what the doctor decides is best based on their 'experience'. And no, it's not OK to hold different opinions on science if that means the clinician deciding their prejudices over-ride what has been shown in clinical trials. The science is not uncertain on GET and CBT, it shows they don't work.
 
'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.
 
Jonathan Edwards said:
'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.
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I assume he is confusing trigger with cause or maybe he believes the trigger is the cause?
 
Adrian said:
Given comments from Hammond saying he hope NICE would approve a diagnostic test It seems he is either completely unaware of the research or unaware of how NICE work (reviewing what exists). No one is anywhere near a diagnostic test.
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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?
 
Jonathan Edwards said:
Yes, I agree. Having tried to look at the article it doesn't seem too bad except being wishy washy about let's all compromise if we have different views. I am banging on about the case by case thing because it looks like what might derail the whole business. Although, fortunately, it should have no impact on the formal evidence assessment. There are ways to shift scores up or down if you have evidence but until you have evidence the issue of choice does not arise.
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When doctors talk about individual care or tailoring things to patients it is important to realize this boils down to doctors having a lot of choice in what they tell patients. Patients will rarely have enough information to challenge the doctors views and suggestions (and doing so doesn't go down well!).

[edit]
I also don't like the phrase rehabilitation that Hammond uses as it suggests that someone will get better and I don't think peoples hopes should be raised. I guess rehabilitation is better than cure as it doesn't say why someone would get better but it feels like an unjustifiable thing. Better just to talk about symptom management.
 
Adrian said:
Given comments from Hammond saying he hope NICE would approve a diagnostic test It seems he is either completely unaware of the research or unaware of how NICE work (reviewing what exists). No one is anywhere near a diagnostic test.
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He may have meant a diagnostic criteria. NICE didn't recommend a specific diagnostic criteria, but just recommended looking for certain key symptoms
 
Adrian said:
Given comments from Hammond saying he hope NICE would approve a diagnostic test It seems he is either completely unaware of the research or unaware of how NICE work (reviewing what exists). No one is anywhere near a diagnostic test.
Click to expand...
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.
 
petrichor said:
He may have meant a diagnostic criteria. NICE didn't recommend a specific diagnostic criteria, but just recommended looking for certain key symptoms
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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!
 
hinterland said:
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. It’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.
Click to expand...

If it is an attempt at humour its very poor - but that doesn't surprise me. Perhaps one of the issues of communicating over twitter (although he did write an whole article which really said very little but I'm interpreting it as yes publish the guidelines but doctors should continue doing whatever they want anyway). I've never been impressed with Hammond he has never come across as a clear thinker to me!
 
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