Closed Forward ME Group CBT/GET Survey - Tell NICE your experiences

I'm guessing it was about time? The next NICE meeting is 6 February, and the one after that is in March. I think I read that the results will be ready for March? That's not a lot of time.

If you list supportive versus directive CBT, you'd need to describe both in detail, and there's still a chance people wouldn't know which they had. Likewise, trying to explain the difference between GET, GAT and 'pacing' that's really GET might not be straightforward, either.

Arguably, you also introduce bias if you imply a hierarchy between different types of CBT (i.e., that one is better than the other). The simplest thing to do would be to use the terms the NHS use, exactly as the NHS uses them, so you can't be accused of fishing for negative responses.

It depends how you interpret the word 'offer', I guess?

My local McDonald's offers lots of things, even if the cashier doesn't ask me about each one individually. So there's a direct and an indirect way of offering something.

A specific clinician may not have directly offered you the treatment, but if the clinic generally advertised that it was available and you still decided not to pursue it, that could still count as an offer depending on your perspective.

But I'm probably overthinking this.

 

If somebody could store and post some or all of the questions that would be great.

 

Further to my post above, the manual for CBT therapists also states:

According to Wikipedia, an earlier 2002 “Manual of cognitive behavioural therapy for CFS” by Chalder, Deale, Sharpe and Wessely states:

Unfortunately, the 2002 manual no longer seems to be available online so I’ve not been able to verify the accuracy of the quote.

 

I found it in this file here:
https://forums.phoenixrising.me/ind...treatment-manuals-trial-identifier-etc.15109/

 

Having posted twice without reading the questionnaire, I’ve now read and completed it.

I hadn’t realised that the questions were written by Forward-ME and that the descriptions of CBT and GET were in quotes. It’s obviously too late now, but I think it would have been helpful to provide the source of those quotes (the current NICE Guideline, CG93) and to also provide quotes of the treatments as they are described in research upon which the recommendations are based (as stated above).

However, I have a great deal of respect for Forward-ME and I would not expressed any scepticism about the authors’ intentions if I had realised the questions had been written by the FMG rather than NICE.

Appologies for my misunderstanding and any offence caused.

 

Showing my wife the starting blurb of the survey and was reminded of this bit

@Gecko , if, as in my case, a patient is NOT offered either of those treatments then their experience with 'the system' is discarded. I appreciate that the main idea is to capture the experience of patients with CBT and/or GET, but my experience is of the system just abandoning me - should this not be recorded at all?

 

If you went to NHS and they offered it then you should fill it in. We are dealing with the reality of NHS not the dream world the CBT & GET lot are or would like us to live in.

There are boxes to explain yourself, which I did.

We need CBT and GET seen for what they are in reality and taken down. Once we have no treatment they have to research and give us other treatments?

 

But my point is that neither were offered to me. I was "too positive" for CBT, and was, effectively, told to manage my exercise levels myself. And as neither were offered this is evidence, albeit n=1, of the treatment centre not following NICE guidelines.

 

n=2 now

https://twitter.com/user/status/1083719727321702401


ETA: Not sure why that tweet isn't loading (it isn't for me at least) but, as you can see I've copied the text of it above.

 

make that n=3

eta: although, I just thought, I was diagnosed [with ME] in 2001 so before CBT/GET really took hold and before the NICE guidelines. Also, I'm guessing that at that time I was also considered severe (although knowing what I know now I would say I was moderate/severe).

 

No wonder they think the treatment so successful. They seem only to offer it to those for whom they think it might work.

 

I personally think it would help if NICE updated or better defined what it meant by:

GET (e.g. aerobic which is arguably what is hard to tolerate/causes harms with unmanageable increments in intensity),
Graded Activity Management (e.g. non-aerobic and learning to manage as best you can),
Pacing (which NICE defines and says is the patient's favoured approach but says there is no evidence to support),
and CBT (the type that is helpful for grieving, acceptance and coping and the type that is for kidding yourself you aren't sick),

...in the new guideline. All are I think used in the NHS specialist clinics - not by all clinics all the time, I think they pick and choose or focus on one or two and several may well base their 'treatment' approaches on clinical trials and not the NICE guideline per se.

The definitions in the survey were taken from Appendix D which is attached to the main guideline. Had there been time and inclination the survey would clearly have been better to have asked people about all experiences of courses/advice run/offered by the NHS since the guideline was published as we did in the ME Association survey in 2012. As well as experiences from private practitioners that might have been necessary for people seeking insurance claims etc.

But hopefully the answers on GET and CBT and the free-form comment boxes will allow for a reasonable response.

N.B. I was also excluded from the survey as the treatment I received from my NHS ME/CFS service was not GET or CBT.

Russell

 

I think this is very misleading, because these definitions relate to NICE's 2007 CG53 guideline, which is the very guideline being overhauled because it is flawed! I know Forward ME has their disclaimer, but I do not think it is anything like enough to avoid being misleading. I would prefer a stronger disclaimer (whilst still phrased so Forward ME can publish it!) along the lines of:

"As Forward ME has been asked by NICE to conduct this survey, we have copied in their definitions of CBT and GET below. Please note, these definitions are from the existing 2007 NICE guideline, which is being replaced because it is out of date. Please also note, these definitions are not a reflection of the views of the members of Forward ME, for these, please go to their respective websites or contact them directly."

 

I’ve not heard of graded activity management. I’ve heard of AM which is basically pacing and Graded activity therapy which is aiming for increased activity and is offered to those incapable of aerobic exercise but in the same spirit. Whilst some manage it , usually if they’re feeling better or at least receptive to it anyway, It can feel as impossible and if pressurised as harmful as GET.
I’m guessing you mean the approach I notice dr shepherd usually Which is pacing and GAT when possible , but not as an intervention, more a natural management technique. I think the danger is with centres designed to offer “treatment” they push for steady increasing rather allowing for ebb and flow or ceilings reached.

 

you can just do it again and say yes, I did when I was snooping. I know this is more about the get offered to all mild-moderate but I think GAT applied the way you say is just GET lite. I think that i Saw Dr Charles Shepherd advise someone similar to do the questionnaire

 

Graded or grading is another word/term that is often interpreted differently I think. My local ME/CFS clinic defined it as 'grading' the activities you would normally do or try to do in terms of how much it takes for you to do them. So, something that took a lot out of you would be a high score, and e.g. resting would be a lower score.

It was a way of seeing just what you were capable of doing in the present, and trying to bring things down to more a more manageable level by 'pacing' them over a perhaps longer period or breaking them up into smaller chunks. There are always things we can do, need to do, and would like to do. And GAM was a method for helping us work with what we had and realising - for some - that some things weren't achievable, might be delegated, weren't as important, could be worked towards in a better way etc.

It also helped some patients see more realistically just what they were capable of and discounting the things they tried to do but were unrealistic. I guess it helped also establish the base-line and provided a means of validation of disability/ability.

I think graded can also be interpreted as 'incremental increase' when used in the context of GET.

To be honest without digging out my workbooks from 10 years ago I couldn't swear to the term GAM (Graded Activity Management) but I'm pretty sure they used it. It sure would be 'nice' if we all worked from the same hymn-sheets.

Russell

 

I think this just highlights how varied the so-called evidence based approach to 'treating' ME is in this country. As you describe it, this is nothing like as is described by PACE (not that you don't know this, I'm just stating what is obvious for us but not, obviously, for NICE/the NHS).

 

Of course it should be. It is abhorrent how many people are abandoned by the system. However as I understand it there were many restraints on this survey, including time and the amount Oxford Brookes Univeristy could be asked to do, and NICE had specifically asked for more evidence around CBT/GET.

As far as I'm aware NICE do not have the remit or power to enforce their guidelines. Their role is to write the them based on the best available evidence, it is then up to CCGs or health boards to ensure that the guidelines are being followed. We know how lax this is from the MEAssociation's recent poll (Dec 3rd 2018) asking how many pwme had a healthcare plan (<5%), but this is something to be taken up with the CCG or health board.

Out of interest, do you understand what they meant by "too positive"? Were they attempting to preempt who would and wouldn't respond?