IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

They probably think that cognitions of symptoms are the symptoms themselves.

 

I just refound this thread and am skimming pages 2-14 in an attempt to catch up (currently on page 11).

My first impression of Mark Baker's response is as follows, forgive my perhaps ill-informed paranoid speculations:

This is not about ME or GET or CBT. It is about the government-backed BPS approach to benefits, which is too big for even Mark Baker. So any change in the NICE guidelines made necessary by these troublesome ME people cannot challenge the BPS-backed benefits policy of blame them and get them back to work.

Mark Baker's reply reads as if BPS is alive and well in the background and he's been talking with his fingers crossed behind his back all the time.

Yes, we'll scrap the guidelines. But that doesn't mean we'll scrap GET or CBT, we're actually going to scrap a sub-section of patients, it's much easier. If you thought "scrap" meant GET or CBT that's your problem, I never said that.

Also, scrapping the guidelines and starting from scratch doesn't mean that the new guidelines will necessarily be much different from the old ones. If you thought that's what I meant, that's your problem, I never said it.

We are going to protect the good, which means keeping GET, CBT and our clinics. If they aren't working for some, it's because somebody isn't understanding / implementing our carefully nuanced and crafted recommendations. We reserve the right to blame the doctors, the therapists, or the patients. It is not the fault of the guidelines. They are a thing of beauty, but it may be possible that in some cases they are being applied inappropriately or to the wrong people.

Most likely planned outcome to me is that the existing guidelines are largely retained, but with a warning to doctors / therapists / centres / patients to JUST DO THEM PROPERLY. Maybe there'll be some more jobs for the boys running training courses on how to steer the ship. There will also be an acknowledgement that CBT and GET are not appropriate for all patients, there are some who call themselves "severe ME" (whatever that is). OK, to show that we're responsive to patients' input, we'll rebrand those patients and tell them to bugger off. We own ME/CFS now, and it is what we say it is. You may have thought you had it and come and tried to spoil our party with your complaints and horror stories, but actually you've got something else. The name for you (and appropriate treatment) is yet to be decided, but someone will be getting a shitload of money to make something up. Bye bye.

 

This is why we desperately need a measurable biomarker, if anyone tried to pull this crap about cancer patients, diabetics or MS patients they would be laughed out of the room (and hopefully put in front of an ethics board)

 

Patients don't need a biomarker to tell the BPS approach to fuck off It doesn't work and that's enough.

 

Enough to get them to drop their harmful lies and forced treatment?
I hope so

 

I bet they try to dump the rest of us in the BDD MUS nonsense and claim that they have now refined the GET CBT category down to the people who can benefit from it.

 

Instead of starting with the problem and trying to find a solution to it, they invented a solution first and are now trying to find a problem that they can apply it to. Having sold their solution as soon as they invented it, the job of finding the right problem is now a matter of urgency.

 

"We know the illness is your fault. We just have to find out why."

 

I fear @TiredSam might be right; I carefully thought this after reading Baker's answer to the liME letter, too. This thought deepened after the discussion what would happen with the ME/CFS centers. I could imagine they substitute ME by any other psychological diagnosis in future (they are so similar, the symptoms! ) - but who knows?

More is needed to overthrow the power of the BPS folk. It's politics. The BPS model fits perfectly modern economic needs and ideologies (e.g. everybody's his own creator of happiness - just exercise, work, talk and think positive, et voilà!), therefore their big success in almost every part of life.

@Jonathan Edwards put it pretty suitably with his prayer metaphor: Their beliefs are like a religion, and we are trying to take away a main part of it. This won't happen without a fight.

 

For the BPS crew it would just be a ouija board.

 

More cost effective i suppose, their ancestors will probably say how ashamed they are that they believe superstition

 

Agree with this 100%.

Much much better to have concise totally watertight arguments focusing on the essentials, rather than add more and leave little gaps for people to drive wedges into.

 

I really cannot get my head round how anyone can say this ...

 

Where does that come? I cannot make sense of it.

 

From the link ...

... in @strategist's post ...

https://www.s4me.info/threads/iime-...ecommended-treatments.1949/page-13#post-35845



I finished writing a post there (joined Reddit specially to do so), and then saw the above comment. Really makes me realise what we are up against.

 

I've been going round in circles trying to understand what Fission Mailiure is trying to say too @Barry - I'm glad it's not just me struggling.

 

I can only imagine that the warped logic is that if the results are significant enough then bias doesn't matter. As if they think the bias is down in the noise or something?

 

I can't work out if it is just someone too far from reality to be bothered with, or if this is actually a real insight into the alien world of psychiatric trialling.

 

If the results are biased, how can they be clear? Is he talking about large effect sizes? If I remember right PACE didn't have large effect sizes in comparison to the already inadequate control group. I think he may just be making up his own reality.

 

Exactly. I don't think this person sees that. The 2nd part of the sentence suggests they maybe truly believe the bias cannot be significant. They may even be confusing bias with noise.