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

[adambeyoncelowe]

Or, on a second thought: Why doesn't the survey list the diverse types of GET and CBT offered by NHS therapists first and asks which type of CBT / GET did apply to the participant? (Too complex?)

(And I'm asking myself why the charities didn't ask S4ME to involve in the design of the survey?)

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.

But not being offered the treatment at all disqualifies me, that's different to starting a treatment and not finishing it.

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.

 

[Dolphin]

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

 

[Robert 1973]

The PACE manual for CBT therapists was clear that the therapy was based on a model of ME/CFS which assumes that the illness is maintianed by patients’ unhelpful beliefs:

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

The essence of CBT is helping the participant to change their interpretation of symptoms and associated fear, symptom focussing and avoidance. Participants are encouraged to see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology. In this way it is anticipated that they will gain more control of their lives, as they, and not their symptoms, dictate what they do.

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

The patient is encouraged to think of the illness as 'real but reversible by his or her own efforts’ rather than (as many patients do) as a fixed unalterable disease.

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

 

[Dolphin]

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/

 

[Robert 1973]

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.

 

[Andy]

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

According to NICE if you have mild or moderate ME/CFS, you should be offered CBT and/or GET.

@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?

 

[Sean]

All these precautions are already applied and they don't work.

This is a central fact about GET, scheduled or 'negotiated': None of the standard cautions and modifications for exercise therapy work for ME. It is a whole new ball game.

I see they use the NICE 3 severity gradings which list severe ME as being unable to do hardly anything or maybe a face wash and teeth. I have always found that an inadequate description of severe ME according to my symptoms range, especially when moderate is basically greatly impacted so as to leave work or study I think.

Agree. I hover around Moderate-Severe, according to those definitions.

If you are no longer able to work enough to reliably provide for yourself (and any dependents) then you are Severe.

 

[Tilly]

I can't, honestly, fill this in. The first question is

when I went to the regional CFS service, that as far as I know is no longer in existence, I was deemed too positive for CBT and I was left to my own devices in terms of exercise. Due to the BPS propaganda I tried my own version of GET but not in any official sense. So I can't see that I qualify to fill it in.

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?

 

[Andy]

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.

 

[Andy]

n=2 now

Ok so not elligible because I have been offered nothing...I hope you are recording that too! Offered no treatment no support...

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.

 

[Sly Saint]

n=2 now

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).

 

[Trish]

Damn.

I went to fill it in about the home visits I had from an OT from the nearest ME clinic in 2011 when my ME was moderate/severe.

Her advice/treatment involved diary keeping to try to find my baseline, then planning ahead a daily program, changing between activity of different levels of intensity and rests based on this, with the instruction to plan to add an extra activity each week and gradually build up. She called it pacing, but it was more like graded activity increases. It was useless. I couldn't increase my activity without setbacks so I stopped trying.

Because it wasn't called CBT or GET I selected 'No' on the first question and was then shut out of the questionnaire, so my experience of a form of graded exercise/activity is not recorded. I suspect the same will be true for lots of people. A pity.

 

[chrisb]

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

 

[Russell Fleming]

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

 

[Barry]

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 not a reflection of the views of the members of Forward ME, for these, please go to their respective websites or contact them directly.

Cognitive behavioural therapy (CBT)
"An evidence-based psychological therapy that is used in many health settings, including cardiac rehabilitation and diabetes management. It is a collaborative treatment approach. When it is used for CFS/ME, the aim is to reduce the levels of symptoms, disability and distress associated with the condition. A course of CBT is usually 12–16 sessions. The use of CBT does not assume or imply that symptoms are psychological or 'made up''.


Graded exercise therapy (GET)

"An evidence-based approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. The objective is to improve the person's CFS/ME".

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."

 

[Cinders66]

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’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.

 

[Cinders66]

Damn.

I went to fill it in about the home visits I had from an OT from the nearest ME clinic in 2011 when my ME was moderate/severe.

Her advice/treatment involved diary keeping to try to find my baseline, then planning ahead a daily program, changing between activity of different levels of intensity and rests based on this, with the instruction to plan to add an extra activity each week and gradually build up. She called it pacing, but it was more like graded activity increases. It was useless. I couldn't increase my activity without setbacks so I stopped trying.

Because it wasn't called CBT or GET I selected 'No' on the first question and was then shut out of the questionnaire, so my experience of a form of graded exercise/activity is not recorded. I suspect the same will be true for lots of people. A pity.

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

 

[Russell Fleming]

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.

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

 

[Andy]

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).

 

[Gecko]

@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?

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.

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.

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?