JHP Editorial: Special Issue on the PACE Trial

[Valentijn]

They're not going to start the process to review their guidelines unless they are forced to by something big, like a change of direction from Cochrane (whose work their surveilance review relied upon).

Political pressure might also work - like fear of losing their jobs if they continue to fail to do them properly. Their behavior isn't about the science, so I doubt science will ever be the solution. They'll always find a flimsy pretext to justify their decisions, and pretend they're too stupid to understand the scientific objections to those decisions.

We won the science arguments decades ago. This is a political fight.

 

[Esther12]

Political pressure might also work - like fear of losing their jobs if they continue to fail to do them properly. Their behavior isn't about the science, so I doubt science will ever be the solution. They'll always find a flimsy pretext to justify their decisions, and pretend they're too stupid to understand the scientific objections to those decisions.

We won the science arguments decades ago. This is a political fight.

I don't know how we could bring that sort of political pressure to bear withing the UK system. British politicians are not going to intervene like that (maybe I'm wrong - Corbyn's Labour does seem genuinely different to what I'm used to?). The UK Establishment hates holding anyone accountable for anything: it's how they all get away with being such bastards.

At the moment, Cochrane seems key to NICE's justifications for no changes, so that's probably where we need to focus on trying to improve things. Cochrane should be pushed to justify their work, or retract it.

edit: Actually - I don't really know what I'm talking about. Maybe we could find helpful ways to apply political pressure? It seems to me that NICE is set up to resist that sort of thing, but I'm often wrong about this sort of thing.

 

[Valentijn]

I don't know how we could bring that sort of political pressure to bear withing the UK system.

Make a lot of noise, embarrass them, and don't let up the pressure until they submit Legal action may help accomplish that, even if there's little chance of success in the legal system itself. Merely suing NICE or whoever else is screwing over ME patients would get a lot of attention.

 

[Sean]

I have no doubt that Corbyn Labour will be looking for serious ethical and policy failures by both the Tories, and the Blairites within Labour, to differentiate from and attack or subdue them.

The issues with ME (and BPS & MUS more broadly) are an intersection of such failures across several policy fronts, all nicely rolled into one convenient package, that offers Corbyn Labour a nice big policy club to wield against their political enemies.

No idea what Corbyn's views on this issue are, or if he has any, or if he is even interested. But given his general stances and comments he would seem more likely to be more sympathetic to our plight than any political leader in the UK over the last 30 years.

Also have no doubt that, given Corbyn has a good chance of being PM before much longer (best I can tell), the PACErs and friends will be trying extra hard to win Corbyn Labour over. So anybody with connections to senior Labour needs to get talking to them and make sure we get to put our side of the story before they make a rash policy commitment they can't easily back down from. No politician wants to be caught in that situation.

We don't need uncritical support from Corbyn Labour. We just need to get them to understand that all may not be as the UK medical establishment claim, that this has important implications beyond just one disease, and that consulting widely (including outside of the UK) is a wise move before finalising policy on this matter.

 

[SamanthaJ]

Clare Gerada threatened to cancel her Labour membership when Corbyn became leader. Don't know if she actually did.

 

[Sean]

Clare Gerada threatened to cancel her Labour membership when Corbyn became leader. Don't know if she actually did.

Those precious little petals certainly do like throwing a petulant foot-stamping walk out when they don't get their way.

 

[Jonathan Edwards]

Clare Gerada threatened to cancel her Labour membership when Corbyn became leader. Don't know if she actually did.

I cancelled my Labour membership when Tony Blair got into Bernie Ecclestone's car - the very same day.
Corbyn was one of my patient's MP at a time when I ran out of money to continue treating RA patients with rituximab. He replied to a letter very sympathetically, having obviously read and thought about what I wrote.
When he became leader I came to the conclusion that he was nuts. But he says what he thinks and seems to be learning fast about the pragmatic realities of how to make the UK work alongside a Europe that is in a circle of self-destruction. There seems little doubt that if he were in charge everyone would get better healthcare.

 

[Binkie4]

Clare Gerada threatened to cancel her Labour membership when Corbyn becameleader. Don't know if she actually did.

@SamanthaJ @Jonathan Edwards @Sean

Well she worked for the Libdems at the last election, for sure

ADDENDUM: why can these people not lead quiet lives out of the public eye?!!

Apologies to Sean. Cross posted my addendum

 

[MeSci]

@SamanthaJ @Jonathan Edwards @Sean

Well she worked for the Libdems at the last election, for sure

ADDENDUM: why can these people not lead quiet lives out of the public eye?!!

Apologies to Sean. Cross posted my addendum

According to Wikipedia:

(https://en.wikipedia.org/wiki/Clare_Gerada)

"In September 2016 she was named as one of the Liberal Democrats' "new Beveridge group" of advisers.[13] She had been a lifelong supporter of the Labour Party until the United Kingdom European Union membership referendum, 2016.[14]"

 

[lilpink]

Well she worked for the Libdems at the last election, for sure

Oh really? That explains why Norman Lamb was extolling the virtues of her husband then.

 

[Binkie4]

@lilpink

I haven't read what Lamb said but she did participate and caused me some qualms.

 

[lilpink]

I haven't read what Lamb said but she did participate and caused me some qualms.

I don't know how much is committed to print, but I certainly saw Lamb spout forth via TV media about the wonderful Simon Wessely. Being a bit of a floating voter I immediately crossed the Lib Dems off my list of possibles.

 

[Binkie4]

@lilpink
That was what concerned me.

 

[Esther12]

Oh really? That explains why Norman Lamb was extolling the virtues of her husband then.

Nah - Lamb is just that sort imo. Think he's been doing it for a while as a part of his misguided mental health campaigning.

 

[Luther Blissett]

edit: Actually - I don't really know what I'm talking about. Maybe we could find helpful ways to apply political pressure? It seems to me that NICE is set up to resist that sort of thing, but I'm often wrong about this sort of thing.

Make a lot of noise, embarrass them, and don't let up the pressure until they submit

I'm thinking that a well worded petition publicly removing consent to be 'treated' by NICE recommendations by ME patients and carers could cause some interest?

 

[Cheesus]

There seems little doubt that if he were in charge everyone would get better healthcare.

That shouldn't be difficult. You could put a dead goldfish in charge and it would still be an improvement on our current trajectory.

 

[Jonathan Edwards]

That shouldn't be difficult. You could put a dead goldfish in charge and it would still be an improvement on our current trajectory.

You weren't referring to Boris there were you?

 

[Cheesus]

You weren't referring to Boris there were you?

No, he is some other type of marine animal. A bottom feeder, perhaps.

 

[alex3619]

This is a political fight.

A point I keep trying to make. They politicize the science and medicine, and then fight on the politics.

 

[Countrygirl]

The above is from David Marks's twitter feed dated 20th August.