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

There is if there is failure of due process. I believe, if I remember correctly.... it's called Judicial Review..?

 

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.

 

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?

 

It was brought by two ME patients:
https://meassociation.org.uk/2009/03/nice-statement-on-the-outcome-of-the-judicial-review/

eta:
http://www.investinme.org/Documents...-Statements of Concern about CBT-GET 2009.pdf

 

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

 

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.

 

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

 

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/

 

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.].

 

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.

 

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.

 

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!

 

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!

 

Doug Fraser

 

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.

 

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.

?

 

BPS people who claim to be retired seem to keep coming out of the woodwork though.

 

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.