"No More Mr NICE Guy…" by Prof. Brian Hughes

JemPD said:
Indeed & the worst of it is that they kid themselves that they are the ones being supremely ethical & with our best interests at heart.
They think they are my mother, whom when i was a toddler would rename vegetables that i said i didnt like (that she knew i did as i had eaten & enjoyed them before, before i knew what they were called - thus peas became 'petit pois'

"I dont like peas"
"Oh i know you dont like peas Jem, no i would never give you peas because i know you dont like them, but these are not peas these are petit pois they are veerrry special, a real treat, & although they look a bit like peas they taste very different, they taste quite sweet not like peas, peas are yuk!"

It seems funny doing that to a 4yr old who did like peas but was just flexing her 'i get to choose' muscles & would have eaten biscuits for every meal given the choice (ie my mum did know whats best for me & manipulated me ethically with my best interests at heart). But assuming the same dynamic is at play when you are an adult psychiatrist talking about and to, a competent adult patient, just reveals that you think we are toddlers and you are the all knowing parents.
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And there are situations in medicine where allowing adult patients make their own choices is not the best option for patients e.g. anorexia nervosa, patients who are suicidal, etc. Generally these are mental health conditions of one sort or another which is why I think a distinction between mental and physical conditions can be useful: we don’t tend to override the choices of adults who don’t have mental health conditions; we also trust their descriptions of their symptoms, etc. more. And mental health professionals are more accustomed to ignoring patients' preferences, distrusting patients’ testimony as unreliable, etc. than other healthcare professionals.
 
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Kudos to @Jonathan Edwards, the current NICE reviewers and @Brian Hughes. Broadening the attack from ME specifics to BPS research in general is absolutely essential. It reminds me of a conversation I had many years ago with a coordinator of one of the Cochrane nodes that developed reviews across a wider range of medical specialisms than most. She volunteered that the psychiatrists and clinical psychologists were by far the most difficult of all the reviewers to work with. They rejected peer review feedback, played the victim, and pretended they didn't have conflicts of interest. She was appalled that one of their reviews was led by a psychiatrist who also advised the government on the same issue. This was not remotely connected to ME, which didn't enter the conversation.

Part of the problem pwME have is being tied to a dysfunctional profession, without necessarily realising that its unscientific conduct runs across the board.
 
It doesn’t detract from his point but, having looked at this more closely, I think Brian has conflated outcomes with studies in his summary. Most the the studies report more than one outcome so there are many more outcomes than studies – although some of the outcomes listed in the tables in the NICE document are from more than one study, so it’s a bit confusing.

If you’re reading this @Brian Hughes, I wonder if you could make a correction (if I’m right). Many thanks for another very good and helpful blog.






If anyone manages to work out or find NICE’s evaluation of quality of evidence of outcomes from individual trials please share.
 
Robert 1973 said:
If anyone manages to work out or find NICE’s evaluation of quality of evidence of outcomes from individual trials please share.
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Could this be helpful?

[H] Appendices for the management of ME/CFS
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-8

Appendix D–Effectiveness evidence: p. 31ff

PACE trial: (searched "White 2011") : p. 149f

It's a detailed evaluation though, and every comparison between trial arms is evaluated seperately -- 1st one for 1 of 9 'protocol outcomes' looks like this:

RESULTS (NUMBERS ANALYSED) AND RISK OF BIAS FOR COMPARISON: GET versus ADAPTIVE PACING THERAPY (APT)
Protocol outcome 1: Quality of life at longest follow up available- Actual outcome for adults; severity mixed or unclear: EQ-5D utilities at 52 weeks; Group 1: mean 0.59 (SD 0.3); n=143, Group 2: mean 0.54 (SD 0.29); n=148; EQ5D -0.594 -1 Top=High is good outcome; Comments: Baseline values: GET 0.52 (0.26); APT 0.48 (0.27)
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Risk of bias: All domain -High, Selection -Low, Blinding -High, Incomplete outcome data -Low, Outcome reporting -Low, Measurement -Low, Crossover -Low; Indirectness of outcome: No indirectness ; Baseline details: All groups very similar in terms of age, sex, ethnicity, meeting International CFS criteria, meeting London ME criteria, any depressive disorder, any psychiatric disorder, duration of ME and BMI. Similar baseline outcome value. Group 1 Number missing: 17, Reason: unclear; Group 2 Number missing: 11, Reason: unclear
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Robert 1973 said:
Looking at “Evidence review G” I think Brian may have conflated studies with outcomes.
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Robert 1973 said:
Professor of psychology Brian Hughes summarises NICE’s evaluation of research on graded exercise and CBT for ME/CFS: 172 CBT studies: 89% graded very low quality, 11% low quality 64 GET studies: 81% graded very low quality, 19% low quality.
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All those parts of the draft guidelines still are a jungle for me, so I might conflate even more things; but I think you're right, @Robert 1973 --

see [H] Appendices for the management of ME/CFS
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-8

p.30 = Appendix C–Effectiveness evidence study selection -- Figure 1: Flow chart of clinical study selection for the review of non-pharmacological interventions

Papers included in review, n=74 (55 studies)

(Papers excluded from review, n=223 - "Reasons for exclusion: see Appendix I" = p.448 ff)
 
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Important questions for after. Those need to be asked. It was always obvious that those experiments were of very low quality. This all adds up to tens of millions and decades of wasted opportunities, millions of lives ruined for absolute garbage. It was always blatantly evident that this research was pointless, let alone doing it identically hundreds of times over.

But more important it keeps getting funded and will for the near future. Despite adding up to very low quality evidence, something that was explicitly said the whole time by the people who knew better. We know this, several are ongoing and planned. All of them equally useless, all very low quality, all maximally biased and identical to the decades of copy-paste attempts before.

A funding institution should not be in the business of funding repeated failure. Zero excuse for having funded this at all, it never had any merit and anyone with basic common sense should understand this. It's so bad that frankly all of it should be reimbursed to serve as a lesson, that funding ideological research is not appropriate and should carry consequences for failure at basic oversight.

Even if it's for after, doesn't mean we can't prepare for what comes next. This is what part of what comes next. This was institutional failure, blatant and inexcusable.



 
Robert 1973 said:
It doesn’t detract from his point but, having looked at this more closely, I think Brian has conflated outcomes with studies in his summary. Most the the studies report more than one outcome so there are many more outcomes than studies – although some of the outcomes listed in the tables in the NICE document are from more than one study, so it’s a bit confusing.

If you’re reading this @Brian Hughes, I wonder if you could make a correction (if I’m right). Many thanks for another very good and helpful blog.






If anyone manages to work out or find NICE’s evaluation of quality of evidence of outcomes from individual trials please share.
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Hi @Robert 1973 -- and all -- and thank you to another user who contacted me by email to alert me to this.

I have made a slight edit to my blog post and added a footnote to explain. I dated the footnote so that there is complete transparency.
If anything, my critique is actually strengthened by this clarification.
I greatly appreciate your vigilance. Thank you for raising this.
All the best,
B.
 
I actually spent a couple of hours reading Appendix G yesterday after very much enjoying Brian Hughes’ blog and I was really impressed, with my laywoman’s understanding of it anyway, of how specific and thorough the committee’s dissection of the evidence base has been, I can see now why it took months if they were going through it all in such detail. A huge undertaking by everyone and a very powerful repudiation of the BPS hypothesis. Thank you all so much.
 
dave30th said:
He's had trouble with it for a while. So he's not on twitter at the moment. A glitch not having to do with anything he tweeted.
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Is there anything the ME community can do to help get it sorted out?

I don't tweet but do follow some threads without logging in & one of the threads I regularly look at was recently locked by twitter. They were taken out by an algorithm who wrongly interpreted or parsed, wherever algorithms do, a tweet. Other twitter accounts got involved on their behalf - I don't know exactly what they said or did- and the account was unlocked on Nov 11th within a few days.

This is the account that was blocked - it's about a squad of rescue dogs -
https://mobile.twitter.com/TheGoldenRatio4

I think it's most unfortunate that Brian Hughes be silenced. Especially now.
 
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