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

This post is copied and following posts moved from this thread:
NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021

Other threads discussing Dr Hammond:
Spoonseeker blog: A (Second) Letter to Dr Phil Hammond
Dr Phil Hammond - Health Revolution tour 2018
NICE Annual Conference 2019: "Transforming care"
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Not a recommendation.

In this morning's print edition of the Sunday Times (News Review, page 26) and online edition:


https://www.thetimes.co.uk/article/...ve-got-no-chance-against-long-covid-v7s9hg9dr

If we can't agree on ME, we've got no chance against long Covid

We need to stop quibbling over guidelines and treat patients on a case by case basis, says Dr Phil Hammond

Dr Phil Hammond | Sunday August 22 2021, 12.01am, The Sunday Times

The publication of guidelines by the National Institute of Health and Care Excellence (Nice) should be a time of hope, and perhaps excitement. We need to know what the best available treatments for any disease are based on meticulous analysis of the evidence from trials and patient testimonies. The most recent guidance for ME/CFS — myalgic encephalomyelitis and chronic fatigue syndrome, my medical specialism — was published 14 years ago. We were due an update last week. It should have been timely — not just for the 250,000 people in the UK suffering the illness, but the million people with the disabling and strikingly similar symptoms of long Covid.

Alas, Nice paused publication, explaining it had “not been able to produce a guideline that [is supported by all. This suggests patients and professionals don't all agree. So what next?

I have worked with young people (19 and under) with ME/CFS for a decade...]

(...)

We all need to work together and embrace differences pf opinion and strategy. More research and better services are clearly needed. Let's start by publishing the Nice [sic] guidance, even if we don't all agree on all of it...

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I could feel my BP going up when I got to the word "quibbling".

 

Here's 25% of the Phil Hammond piece:

https://twitter.com/user/status/1429345309793169410


Those more eloquent in 280 characters than I am might like to add a comment.

I don't think the ST has Tweeted this piece yet (though Hammond has).

 

At least it's sympathetic to people with ME/CFS, and it calls for the guideline to be published

 

https://twitter.com/user/status/1429340343695298567

 

Yes, but this case by case argument is becoming seriously pernicious. It allows clinicians to use whatever they like under the guise of 'choice'. Being sympathetic while at the same time making people worse for life is not what is needed.

It is time that touchy-feely be-nice-to-patients obfuscating was called out for what it is.

Strangely I don't see reference to case by case on the screenshot?

 

The science is quite certain Dr Hammond. PACE shows very clearly that CBT and GET either have no effect or such a small effect that they are not cost effective. Moreover, there is significant informal evidence of harm.

But what I see of his piece otherwise looks OK -are there bad bits later?

 

That makes some sense, his article does read a bit like he's trying to justify non-evidence based treatments under the guise of individualisation. It's such a vague concept that anything could be meant by it. But right now anyone that wants the guideline to be published is miles ahead in integrity to anyone that's stopping the guideline or doesn't want it to be published

 

It misses that it is selected of the Royal Colleges whose "quibbling" has resulted in the delay of publication.

 

What's shown in the Sue Julian Tweet is 25% of the piece.

 

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.

 

Is the rest problematic?
It is if he wants a compromise to suit everyone. That is precisely what we need to avoid.

 

Give me a few minutes and I'll send you a PM.

 

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"

but the RSPCH (and most likely EC, his boss) wanted the publication stopped(?)

And as for more research......well yes, but not the kind that the clinic he works at is involved in.

 

You should have a PM now.

 

This whole individualised medicine thing is a serious concern.

Didn't the concept emerge from the possibility of (eventually) predicting which patients are most likely to respond best to a particular cancer therapy, or be at risk of serious side effects from a drug, depending on their genetics, immune profile, or microbiome? Whether or not it's actually feasible, at least the individual concerned is the patient, not the doctor.

 

Yes. I’ve sent you the whole article.

It’s the usual mix of truth, compassion and total nonsense from Hammond, trying to be all things to all people, whilst tacitly [edit: not tactically!] admitting that he intends to ignore the guidleine and the evidence and carry on using his own magic doctor powers to decide how best to treat people (presumably by carrying on using CBT, GET and maybe LP too).
https://twitter.com/user/status/1429375905303080967