NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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AR68 said:
David, you attended the QMUL PACE tribunal in April 2016. If I remember correctly TC made a claim of abuse/harassment which was later downgraded (not going through the judgment since I have terrible concentration). Over a quarter of a century earlier a report in a newspaper claimed that SW was "abused" .

I've been online for 25 years this month, on Twitter this year for a decade. I've yet to see "abuse".
Criticism, yes.

It's increasingly my opinion (FWIW) that the 'abuse' label is used as an excuse to silence debate from critics.

You can view Twitter any day of the week and see genuine abuse of all sorts of groups of people, usually minorities. I don't believe that the 'BPS crowd' are abused but I do think they often play the victim for self-preservation purposes.
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No disagreement from me. But the two things can co-exist. On a public platform like twitter, there will be some people who are abusive. You can say, don't be abusive, but they'll still be there. At the same time you have many people who will cite any critical tweets, whether or not they're within bounds, to claim they are being abused.
 
Jonathan Edwards said:
It now seems that GRADE works however the people using it fancy to work it.
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Isn't this sort of the standard argument throughout though; as with the treatments, CBT/GET only works if it is being done 'correctly', recovery is only possible if you use their definition of recovery, the results of their RCTs are correct but only if the data is interpreted their way etc etc
 
Jonathan Edwards said:
Oh come on @Esther12, you are suggesting that he has so little respect for Barry that he thinks he has 'bowed to enormous pressure'? Peter Barry is a tough cookie. I learnt that straight away. To underestimate someone like Barry is not very clever.

It is not very hard to see the reality of what is going on here. My wife, as a casual observer is in fits of laughter over Garner's behaviour. Just as one might be over the man with the horns in the Capitol. We are watching people who think they are entitled to say what is true being told that they may not be right. Human nature is quite simple but it is remarkable how many people, especially professionals trained in human nature, fail to see it.
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Thanks @Jonathan Edwards

From the outside these people seem to be relying on something akin to religion i.e. they have a truth but it cannot be measured -- we'll it can but the base objective measurements don't confirm the truth so they have to be cast aside in favour of the subjective --- those who challenge the believers must be ignored in favour of our truth.

As you say they are pseudo scientists.

If they revert to saying we can help you live where you are but we can't give you back the healthy life you had then I'd start having more respect for them.

They're soaking up a lot of money which, since they cannot give you back the healthy life you had, and in fact results in negative policies being imposed on you/your family members (GET), would be better spent elsewhere. E.g. in the UK they have received £5 million for PACE and much of the other Government £millions has gone on similar "research".

Unfortunately this is an example of how the very small amount of public funding should be targeted at research which can benefit people with ME. Also, support should be clearly labelled as support - it's about helping you to live where you are. Finally Government policy, where it is based on pseudoscience/self serving interest, should be challenged.

Of course this is better summed up by Jonathan:
"The hatred reflects a fear that a meal ticket lovingly polished for decades has been shown to be a cheap copy."


I'm not anti religious by the way --- I know people who are deeply religious whom I respect.
 
Jonathan Edwards said:
Yes, judicial review. I think there was a judicial review after the 2007 guideline that recommended CBT and GET - maybe based on appeal from MEA?
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I'm no expert, and I haven't even followed this closely, but I wouldn't recommend that the psychological bunch challenged the revised NICE guidance.

I think they'd have to prove that no reasonable person could possibly come to that conclusion [Wednesbury unreasonable] --- a difficult argument to win. I assume that the earlier challenge to the old NICE guidance failed due to the difficulty in proving that no reasonable person could possibly come to that conclusion; sad since the "evidence base" [PACE?] for the original guidance was soo poor.

Of course they might go to court on the basis that they are so sure of their evidence (laugh) --- and a lawyer would take the fee (sorry for negative view) ---- so it's possible, but I've a sneaking feeling that they know they're on shaky ground!

@Suffolkres
 
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Jonathan Edwards said:
Yes, judicial review. I think there was a judicial review after the 2007 guideline that recommended CBT and GET - maybe based on appeal from MEA?
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oh no it was Norfolk patient Kevin Short and Doug Cross.
It was an enormous amount of work and everone pulled together, but the forces that be.....
One was an eccentric other female patient (JB) who hi jacked the process and scuppered it in effect.
Plus the Kev's QC wasn't up to the task.......
I witnessed the whole painful process........

https://meassociation.org.uk/2007/11/legal-challenge-to-nice-guidance-on-mecfs/
 
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Suffolkres said:
oh no it was Norfolk patient Kevin Short and Doug Cross.
It was an enormous amount of work and everone pulled together, but the forces that be.....
One was an eccentric other female patient (JB) who hi jacked the process and scuppered it in effect.
Plus the Kev's QC wasn't up to the task.......
I witnessed the whole painful process........

https://meassociation.org.uk/2007/11/legal-challenge-to-nice-guidance-on-mecfs/
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I'm no expert but part of the difficult here is the question the court asks e.g. is the decision so perverse that no reasonable person could come to that conclusion based on the evidence? Or e.g. is the decision void because the decision maker was not independent - conflict of interest?

That's different from [the Court] analysing the evidence and determining what the guidance should say.

So the Judicial Review route isn't really a further independent decision on the basis of the evidence.

I'm not a fan of the concept of Judicial Review as an appeal - the Court starts from the point of view that it will not interfere with the decision of the lawful authority [NICE in this case] unless no reasonable person could come to that conclusion [NICE decision] - or conflict on interest [in the NICE committee etc.].
 
FMMM1 said:
I'm not a fan of the concept of Judicial Review as an appeal - the Court starts from the point of view that it will not interfere with the decision of the lawful authority [NICE in this case] unless no reasonable person could come to that conclusion [NICE decision] - or conflict on interest [in the NICE committee etc.].
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Is PG getting his retaliation in first, by suggesting that people are conflicted? Is he thinking so far ahead in the game? It certainly appears that someone might be.
 
chrisb said:
Is PG getting his retaliation in first, by suggesting that people are conflicted? Is he thinking so far ahead in the game? It certainly appears that someone might be.
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I was only commenting generally e.g. if you found out that the brother in law, of the person making a decision, benefitted from that particular outcome, then I assume the Court would grant a judicial review - in effect voiding the guidance.

I don't follow this issue closely but people in insurance companies/with links to insurance companies i.e. who benefit from certain outcomes --- concerning!

It reminds me of the strategy cigarette companies used and which were later adopted by the anti climate change (commercial) lobby.
 
FMMM1 said:
I'm no expert but part of the difficult here is the question the court asks e.g. is the decision so perverse that no reasonable person could come to that conclusion based on the evidence? Or e.g. is the decision void because the decision maker was not independent - conflict of interest?

That's different from [the Court] analysing the evidence and determining what the guidance should say.

So the Judicial Review route isn't really a further independent decision on the basis of the evidence.

I'm not a fan of the concept of Judicial Review as an appeal - the Court starts from the point of view that it will not interfere with the decision of the lawful authority [NICE in this case] unless no reasonable person could come to that conclusion [NICE decision] - or conflict on interest [in the NICE committee etc.].
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Yes you are correct- the Wednesbury Unreasonable ground or argument.
I'm not a fan of the concept of Judicial Review as an appeal- .... nor am I having taken one to the high court and being told by judge I was 'right' but not right enough for a flawed decision to be reversed!

My JR was a planning one!
 
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Suffolkres said:
Yes you are correct- the Wednesbury Unreasonable ground or argument.
I'm not a fan of the concept of Judicial Review as an appeal- .... nor am I having taken one to the high court and being told by judge I was 'right' but not right enough for a flawed decision to be reversed!

My JR was a planning one!
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Yip "right" but not "right enough" sums it up! However, in this case it's those who oppose the revised guidance who have to go through the court ---.

I work in planning policy [UK devolved administration] but I'm not a signed up believer --- more a failed chemistry technician actually!
 
FMMM1 said:
I wouldn't recommend that the psychological bunch challenged the revised NICE guidance
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Yes, I think they might have enough sense to realise this themselves. To do so would put them in a judicial spotlight that I think would be the very last thing they would want to dare risk. Much harder for them to flam flam and bully their way through with baseless arguments, and their low grade science would become much more widely exposed.
 
Barry said:
Yes, I think they might have enough sense to realise this themselves. To do so would put them in a judicial spotlight that I think would be the very last thing they would want to dare risk.
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Who do people think that 'they' would be here? Most of the original crowd seem to be retired. Would a challenge come from Cochrane or McMaster - that would seem to raise the stakes very high. The main casualty is GET and nobody much in the physio world is likely to challenge. Moss-Morris seems the most active person in terms of running services but she does not seem the sort of person to put in a legal challenge.

?
 
I expect the UK BPS people have submitted multitudes of lengthy submissions to the guideline review consultation and expect the committee to bow to their wishes. I wonder whether they already have lawyers briefed to challenge the guideline if it's not changed to satisfy them.
Or perhaps they are already satisfied that they can continue doing exactly the same as now, given the continued inclusion of a role for CBT and physical activity programs.
 
Jonathan Edwards said:
Who do people think that 'they' would be here? Most of the original crowd seem to be retired. Would a challenge come from Cochrane or McMaster - that would seem to raise the stakes very high. The main casualty is GET and nobody much in the physio world is likely to challenge. Moss-Morris seems the most active person in terms of running services but she does not seem the sort of person to put in a legal challenge.

?
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BPS people who claim to be retired seem to keep coming out of the woodwork though.
 
Trish said:
I expect the UK BPS people have submitted multitudes of lengthy submissions to the guideline review consultation and expect the committee to bow to their wishes. I wonder whether they already have lawyers briefed to challenge the guideline if it's not changed to satisfy them.
Or perhaps they are already satisfied that they can continue doing exactly the same as now, given the continued inclusion of a role for CBT and physical activity programs.
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I forget who the submissions are actually from. But putting in a submission following the draft is a different issue from a legal challenge. It costs nothing. The committee was never going to bow to anyone and I suspect that was known.

Briefing lawyers would be quite a task when you have no grounds.

Letting things go and creatively interpreting the new guidelines seems to me much more plausible as a strategy. But it means accepting that the academic programme has been scratched out.
 
Trish said:
Or perhaps they are already satisfied that they can continue doing exactly the same as now, given the continued inclusion of a role for CBT and physical activity programs.
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That would be the smart approach - the draft guideline still had plenty of scope for CBT and exercise.

If I were them, my strategy would be to divide, and conquer most. i.e. largely cede a small minority of patients that have an illness that has a bit of a biological cause - but CBT and exercise can still 'support'. And consolidate occupancy of the much bigger category - the MUS to be managed as part of IAPT, that includes those wth chronic fatigue and all manner of other symptoms.

And then there is Long Covid, which will be an important contested territory.
 
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