Action for ME Tosses Sir Simon Overboard

[Aurator]

Are they tossing Sir Simon Overboard, or scurrying from his sinking ship?

They're on a bombing mission. They're going to find that ship, and when they spot the rabble of passengers looking up in amazement from below they're going to simultaneously open their undercarriages and release their organic payload on to the deck, and some of it is going to bull's-eye onto its targets. If I had any talent with paint programs I'd have done the montage already.

 

[RustyJ]

At present, without additional changes to AfME, such as complete disassociation from Wessely School, CBT and GET and a full apology for the harm they have done the wider community, I don't see this announcement as all that big a deal in the long term.

There are two other possible reasons for making the announcement at this time. Firstly if the data is about to be released (AfME would have inside knowledge of this), then they have much to gain by coming out with this statement. This sort of tactic is not new. Publicly of late they have made a concerted effort to boost membership with various announcements and campaigns. At the same time there has been no effort to distance themselves from CBT/GET.

Secondly, they may know that the data will not be released. So they have nothing to lose by putting out the statement and much to gain by boosting patient support.

Their statement is less about tipping the balance for data release and more about mollifying patient criticism and public relations. Unless, of course, they completely dissociate themselves from CBT/GET.

 

[jadam914]

I agree 100% that shouting and screaming would be a counter-productive tactic.
But aren't MAGENTA and SMILE follow on trials from PACE? If PACE is retracted or discredited then the rationale behind the follow on trials vanishes - as does funding.

Wishful thinking. You have to remember the pseudoscience psychiatry is not bothered by such a small trifle. Freud would not approve of such hysteria.

 

[Sasha]

Wishful thinking. You have to remember the pseudoscience psychiatry is not bothered by such a small trifle. Freud would not approve of such hysteria.

It's worth remembering that if PACE is retracted, the reason for the NICE guidelines not being updated goes out the window (people pointed out the weakness with the earlier CBT/GET studies on which the NICE guidelines are based but NICE said that PACE confirmed their findings so there was no need to review). The review will have to come off the NICE static list, at which point all the CBT/GET studies will be re-reviewed, and that will happen under intense scrutinty - and the recent biomedical studies will be reviewed too.

Don't underestimate how influential PACE was and is. When I first relapsed and was going to various bits of the NHS, they were all talking about it and very excited at the prospect of PACE being published and telling them how to treat ME/CFS. If PACE falls, we're going to see a lot of cynicism suddenly popping up about CBT/GET in general.

 

[MeSci]

As one might expect, there is little discussion of harms:

Serious adverse events
Serious adverse events were reported by clinicians from the clinical team or members of the research team to the principle investigator and the sponsor within 24 hours.

They had a principle investigator? Someone who investigated the principles of the trial? As in definition 1.2 here?

Morally correct behaviour and attitudes

That would be good.

 

[John Mac]

Secondly, they may know that the data will not be released. So they have nothing to lose by putting out the statement and much to gain by boosting patient support.

I wonder if they have been told who will be heading the tribunal in April?

 

[Forbin]

The nautical title of this thread reminded me of this exchange about hubris between Second Officer Lightoller and Colonel Archibald Gracie at the end of "A Night to Remember" (1958).

"I've been at sea since I was a boy. I've been in sail. I've even been shipwrecked before. I know what the sea can do, but this is different."

"Because we hit an iceberg?"

"No. Because we were so sure."

 

[worldbackwards]

Things can always change. And they just did over at AfME.

Interestingly enough, an AfME bigwig was apparently spotted over at Coyne's Belfast talk, and another was at the Edinburgh talk as well.

Discounting the possibility that they wanted to lobby him (which is highly unlikely; it would be much like lobbying a hurricane), I wonder if they are in fact looking for a way back in. They're certainly behaving a bit more like it recently.

 

[Daisymay]

Maybe spinning takes time.

Yes it also took them a long time to publish PACE and then the PACE recovery paper! These things take time.....

 

[Sasha]

Interestingly enough, an AfME bigwig was apparently spotted over at Coyne's Belfast talk, and another was at the Edinburgh talk as well.

@Keela Too said on her blog:

We were also pleased that Clare Ogden, Head of Communications and Policy for Action for ME flew over to Belfast especially for this event.

Forget "Communications", she's Head of Policy. That is indeed a bigwig in this context (that is, a policy context). Perhaps the only wig that matters.

Discounting the possibility that they wanted to lobby him (which is highly unlikely; it would be much like lobbying a hurricane), I wonder if they are in fact looking for a way back in. They're certainly behaving a bit more like it recently.

 

[barbc56]

In this particular situation it might be more effective to focus on the future and to prioritize the issues and goals we want to address about the release of the PACE data.

The past actions by the AfME could be discussed at another time. We can't change what happened but the future is open which means right now it's important how we approach things.

We are on very thin ice. We need to be more vigilant than ever how we approach things.

Freud would not approve of such hysteria

I might steal this!

 

[Mrs Sowester]

In this particular situation it might be more effective to focus on the future and to prioritize the issues and goals we want to address about the release of the PACE data.

The past actions by the AfME could be discussed at another time. We can't change what happened but the future is open which means right now it's important how we approach things.

We are on very thin ice. We need to be more vigilant than ever how we approach things.




I might steal this!

Good idea, maybe start a members only thread so people can speak freely?

 

[duncan]

WE are on very thin ice?

 

[Ecoclimber]

I propose that the HMS PACE piloted by Simon Wessely et al did not reach its port of call but instead ended up in Boston Harbor whereupon members of the Boston Tea Party immediately commence throwing the PACE trial data into Boston Bay.

 

[alex3619]

I propose that the HMS PACE piloted by Simon Wessely et al did not reach its port of call but instead ended up in Boston Harbor whereupon members of the Boston Tea Party immediately commence throwing the PACE trial data into Boston Bay.

At least tea was palatable, it was the notion of foreign rule by people who were ignorant of the real issues that seems to be important here. I admit I do not know much about the Tea Act that led to this.

PACE not only has political overtones, but its run aground on the reefs of science, reason and evidence. Instead of the Tea Act we have NICE and other bodies recommending treatment based upon PACE.

 

[jimells]

At least tea was palatable, it was the notion of foreign rule by people who were ignorant of the real issues that seems to be important here. I admit I do not know much about the Tea Act that led to this.

The short version of the American Revolution is a simple enough story. The wealthy elite slave owners on the west side of the Atlantic didn't want to pay any more protection racket money to the wealthy elite slave owners on the east side. They wanted to start their own protection rackets, and today we have the U.S. Empire demanding obeisance around the globe.

Isn't that right, @SilverbladeTE ?

 

[barbc56]

WE are on very thin ice?

Unfortunately, I think so as far as this issue.

That's not saying we can't complain, write whatever but for now we have to tread lightly and focus on the bigger picture. I loath playing this political game.

Continuing my metaphors on walking/shoes, lets hope the shoe will soon be on the other foot as far as the the ones who need to be accountable and justify their moves.

I have a feeling the soon the other shoe will drop.

I'll quickly exit before anyone starts throwing food or heaven forbid, shoes at me!