Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

How likely is publication of this document going to affect GPs?

Like do they get a weekly email of NICE updates or will they not be informed at all and only know there is a change if they go look it up themselves?

My question is how will an average GP learn of this change?

 

NICE provide monthly primary care updates: https://www.nice.org.uk/news/nice-newsletters-and-alerts

The roundtable meeting was mentioned in the September update.

I think it's the GPs' responsibility to stay on top of guidance updates.

 

They'll also consult the CKS (Clinical Knowledge Summaries).

The most likely place they'll end up is here: https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/

Hmmm. NICE really need to do something about that one.

I'm going to keep an eye on that - because if that doesn't automatically update when they release the new ME/CFS guidance, they need to be told about it.

 

I hope Academy chair and GP Prof Helen Stokes Lampard will tell them as she was informed if the situation and Roundtable and suspect attended...... certainly in spirit if not in person.

 

I don't think it is as simple as that. The rehabilitationists have a significant interest of their own in this. They may not have been very aware of the ME debate until this year but they got interested in the spring after seeing the draft guidelines.

My impression is that they realise that they have no further arguments to press and unlike the PACE people are unlikely to see much point in making noise now. Alistair Miller seems to be somewhere in between.

Posts replying about Alastair Miller have been moved to this thread

 

Interestingly, have seen someone on Twitter share an email from NICE, received today, saying the exec would be meeting next week. Now, whether this is just an email text prepared based on the various releases last week and not updated to say this week, or something more accurate to say they would be meeting next week, remains to be seen. But, again, NICE seem to be struggling with consistency of messaging. I do t envy their comms team, dealing with this, but, they are presumably an experienced comms function.

 

I think Pulse has got that wrong (about the guideline having already been released via an FOI).

NICE has not resumed fulfilling overdue FOI requests. Mine is now 26 days overdue with still no response to two follow up requests for an ETA for fulfilment. Several others that are also long overdue have not received revised ETAs, either. NICE FOI office has left them all hanging.

 

Unless they are fulfilling direct requests faster than those through WDTK?

The stuff that came out before the RT, around the briefing to DoHSC was from a FOI request if memory serves.

[edit as wasn't quite ready with another post and got a tad mixed up on my phone]

 

We're assuming that Wessely, White, Sharpe, Chalder etc. "sent" others to the meeting but who knows perhaps they weren't able to ensure a seat for themselves at the table. They might be quite frustrated that not they, the domain experts, but rehabilitation people like Turner-Stokes (who didn't even try to defend the RCTs) held the debate.

 

Doesn't that quote in the source cited refer to Wessely?

 

I agree, given we are stuck with (non curative) CBT in the new guideline, what we need is to influence how that is now implemented so that it is only for psychological suppport in coping with having got this awful disease and not warped into something brainwashy focused on the disease itself. There must be something similar in place in other diseases, something with realistic limits, that is already respected to some degree and can be adopted in ME/CFS?

 

Has @dave30th had his overdue direct FOI fulfilled yet?

 

Yes, my understanding is that it was a direct FOI (and it does not appear to be on the WDTK site). But it hasn't been disclosed (as far as I am aware) that a copy of the embargoed August 8 guideline (or any later dated iteration) had been requested and had been provided.

 

It does look like the more 'tricky' stuff is being delayed, based on what's in WDTK, so would be surprising if the embargoed copy had been released via FOI when it's not been released through formal channels. Could well be that the author of the article has mistaken the leaked release for that of a different route.

 

For me that was actually the start of how I eventually rolled into looking at the roots of CBT for ME this year; I started out wanting to write an article about the clear similarities between abuse (especially coercive control and sadistic psychological abuse) and the BPS "treatment" approach and advise for/talk about for ME patients. Indeed it's an important topic to discuss.

Not if ME patients (and anyone having the misfortune of being dragged up in the MUS net) and the people around them get a better understanding of the structure of CBT so they can discuss it concretely.

I want to elaborate on an answer I gave here to @Sly Saint (and a shorter one here to @strategist ).

There are two key things to tackle:

1) the content of the CBT itself. The general goals and structure of ME's CBT are the same as CBT for other issues, so in that way there really is no "special" ME CBT in contrast to "normal" CBT. The difference lies in exactly which beliefs and behaviour are thought to be dysfunctional and in need of correction.
As I explained here and here, those can probably be tackled with the NICE guideline: No more activity increase as a treatment -bye bye behaviour part, which means the cognitive part that is meant to keep the patient keeping up those increases despite symptoms falls away too, including "alternative explanations" to physical symptoms like calling ME or the notion that you are sick a "distortion of reality" .

2) the purposefully misleading way that patients are approached and introduced into CBT for ME that is meant to manipulate patients into accepting psychiatric therapy and have them susceptible to the therapist later influencing them into what he/she wants them to do -to keep up and increase activity in spite of symptoms/relapse-, and to accept the abuse that is meant to get them to do it.
The goal was to deliver CBT to ME patients (and everything that could be claimed as MUS), and to that end a couple of modifications were purposefully written into the CBM treatment model of neurosis (an actual comparison was made with a fear of spiders- I kid you not) to tackle two problems:

• Patients weren't into getting psychiatrically treated for their obvious physical illness (a problem in selling the Product and claiming treatment authority and primacy)
• Patients "beliefs and behaviour" were "influenced" by contact with the health care system (doctors were taking patient's physical symptoms serious as indicating underlying physical illness, inconvenient in general, but especially when you're in the middle of trying to convince that same patient that there is no 'there' there; also connected to the first "problem")

To solve that they made two things a part of the therapy: with a range of methods manipulate patients (and surroundings) into thinking that they and their physical illness were taken seriously as such and that their experiences were accepted, removing as much of the psychiatry core from view as possible, and give patients the feeling that they were just trying something out at first (often referred to as a majorly important part of the setup), and isolate the patient from medical health care, propagate gatekeeper roles to medical care for executing CBT therapists and GP's and persuade physicians to join in the psychiatrist's approach, both individual scale and large scale.

I think this particular problem can be handled with education, primarily of patients, but ideally also of physicians, so they know what to look out for, what the red flags are and what things a CBT therapist that claims to work supportively should agree to*. (At the moment that whole "we work together with the patient" is a flowery tablecloth over a crocodile.)
E.g. when a therapist for example says they take your symptoms seriously, the patient should ask if they also accept that they stem from physical illness. And during the CBT process it should be accepted that the patient sees physicians for their illness.

*(If the forum is interested I might do a post about it with a more elaborate discussion of all the tricks used/advised to therapists and physicians. I'm not doing so great atm, so I don't know if and how soon I can do it, but willing to see if I can manage it somewhere.)

As I understand it, then yes, individual things might vary a bit, but it's all within the same framework, so that argument is invalid.
Wheter the "explanation" for an obvious relapse due to an (increase in) activity given "to explore as an alternative" is a stressful telephone call from mum, organising a move, making too much of it, performance anxiety or talking too much doesn't matter: the core issue is that the PENE/relapse as a result of the therapist-prescribed activity is denied and probably the patient's observation of it too.
(It's actually also part of the abuse mentioned earlier, as they basically work with what they get from the patient to use it against them with the same, single end goal in mind: to not have the patient attribute symptoms to activity while they do the graded programme.)

 

But wasn’t this an FOI request submitted to and replied to by the DHSC, rather than NICE?

 

But they've released it nonetheless, and no-one seems to have told them to take it down... (looks like it came from WAMES).

eta: Oh *&^%! It says the briefing, but the link goes to the guidance doc. Oops!

 

Why might Trish do this, as opposed to anybody else, particularly if they use the search function?