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

[Gecko]

The National Institute of Health and Care Excellence (NICE) is rewriting the UK ME guidelines. As part of this process, the Forward ME Group (FMG), which #MEAction UK is a member of, has prepared a questionnaire to provide additional evidence on cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to NICE. The new guideline is expected to be published in October 2020. Take the survey here and read the FMG statement below.

#MEAction article with Forward ME Group statement here

Take the Survey

The survey closes on 31st January 2019.

It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.

This is a questionnaire for adults and children with a diagnosis of ME (Myalgic Encephalomyelitis)/ CFS (Chronic Fatigue Syndrome)/ PVFS (Post Viral Fatigue Syndrome), who received or were offered CBT and/or GET in the UK since 2007. The questionnaire will be asking you about the most recent course you attended.

We are counting on the ME community to spread this across all of their networks, both online and in-person.

Tag me if any technical problems with survey and I'll make sure they get passed on to right people.



Edit:
ME Research UK article here
Action for M.E. article here

 

[Peter T]

I started to look at the Survey and was concerned about the descriptions of both CBT and GET as 'evidence-based' seemed to be prejudging this issue and potentially biasing responses. Also the description of CBT says

"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''.

This strikes me as being misleading about the reality of CBT in different settings and fails to address the distinction between CBT as a tool used to support adaptation to and management of a long term disabling condition and the PACE type CBT which is based on the belief that ME/CFS is a psychological condition and deliberately aims to convince the participants that they have false beliefs about the nature of their condition, and to convince them that increasing activity will 'cure' them, to falsely convince them that exertion is not potentially harmful.

CBT as practiced in the UK is not necessarily compatible with this description.

Similarly the following definition of GET is given

"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".

Similarly this may not correspond to varied reality of GET in different settings. There are approaches to GET based on the belief that there is no underlying biomedical condition and that seeks to impose increases in levels of activity regardless of any negative responses, that encourages people to ignore any adverse responses.

Also I wonder why this is restricted only to people who have offered CBT/GET since 2007?

[added - I have not started filling in the Survey yet, as I am left concerned about whether I wish to support it or not because of this first page, but it is not possible to check what is on later pages without answering questions first.]

 

[ME/CFS Skeptic]

The questionnaire reads:

This is a questionnaire for adults and children with a diagnosis of ME (Myalgic Encephalomyelitis)/ CFS (Chronic Fatigue Syndrome)/ PVFS (Post Viral Fatigue Syndrome), who received or were offered CBT and/or GET in the UK since 2007.

So this is for UK patients only I suppose?

 

[Peter T]

I have not started filling in the Survey yet, as I am left concerned about whether I wish to support it or not because of this first page

I should add that Forward ME does not endorse these definitions:

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.

 

[Cinders66]

2007 was date of last guideline release. I’m guessing this allows for responses to be on the approved medically directed forms of “treatment “ put out by nice, rather than the less centrally directed “care” prior to this.

 

[NelliePledge]

Done it. What I did at the CFS clinic wasn’t called CBT or GET but it was PACE lite so I feel my experience is relevant.

 

[Peter T]

I have now completed the questionnaire and do feel it is useful, though with CBT it avoids addressing the the issue of CBT as a management tool as distinct from CBT aimed at treating ME/CFS. Which means that it either risks throwing the baby out with the bath water, in that positive management aspects get tarred with the same brush as pressure to increase activity levels, or gives dangerous credence to CBT aimed at convincing patients they have false illness beliefs.

It does enable people to describe the impacts on their health/life/work/benefits of CBT/GET.

 

[Peter T]

So this is for UK patients only I suppose?

One of the questions asks for part of your post code, so this should only be completed by people resident in the UK which is a shame.

 

[Gecko]

Also I wonder why this is restricted only to people who have offered CBT/GET since 2007?

2007 was date of last guideline release. I’m guessing this allows for responses to be on the approved medically directed forms of “treatment “ put out by nice, rather than the less centrally directed “care” prior to this.

Yes think it's related to that being when the last guidelines were released.

So this is for UK patients only I suppose?

For people who have had CBT or GET in the UK yes, don't think it matters if they have since moved abroad.

 

[Trish]

I think the use of these definitions that claim GET is evidence based and mis-describe CBT as the supportive version make the survey so flawed as to be potentially useless. Anyone filling it in reading those definitions may have their feedback biased by what they were supposed to experience.

 

[Peter T]

I think the use of these definitions that claim GET is evidence based and mis-describe CBT as the supportive version make the survey so flawed as to be potentially useless. Anyone filling it in reading those definitions may have their feedback biased by what they were supposed to experience.

I share your concerns, but do think we should be encouraging people to ignore the problems of the definitions from NICE which prejudge the issue and to complete the form.

 

[Trish]

I share your concerns, but do think we should be encouraging people to ignore the problems of the definitions from NICE which prejudge the issue and to complete the form.

Sorry, yes, I agree, I don't want to put people off filling it in.

 

[ME/CFS Skeptic]

I think the use of these definitions that claim GET is evidence based and mis-describe CBT as the supportive version make the survey so flawed as to be potentially useless.

I see your point but maybe the authors of the survey intended it this way so that GET/CBT proponents cannot criticize the definition and argue that what they apply is actually different or an updated version.

I think there is a danger that NICE will only acknowledge the most controversial aspects of GET/CBT such as grading activity too fast, challenging somatic attributions or aiming for recovery, and that in the end a downgraded version of these therapies will still stand.

So it's important to recognize that GET already uses collaboration between therapist and patients to set the goals and pace, that it increase exercise very gently and already uses heart rate monitors to guide the patient etc. It's this form of GET that patients find unhelpful. All these precautions are already applied and they don't work. So they can't form an argument against the criticism of GET/CBT. Just speculating here, but possibly the authors of the survey had this in mind.

 

[MSEsperanza]

Thank you to all who are working on this.

It's now probably too late but I wonder how it could have been made more likely that actually (at least mostly) pwME will take part in the survey?

To enhance the significance of the data at least to some extent, an additional question could refer to membership in a ME charity and require a password. Or something like that.

(Apologies - brain-fogged & just thinking aloud.)

 

[Cinders66]

I can’t do the survey as I haven’t done CBT/GET in A “recent “ time frame. I pretended to do a bit . 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 MEaccording to my symptoms range, especially when moderate is basically greatly impacted so as to leave work or study I think.

I think , especially when people are being asked to categorise levels before and after harmful treatment, that a four stage severity as more commonly used, is needed to bridge moderate and basically very severe ME which they document , otherwise the significant shift, from getting out and about to high end housebound, down might not be adequately reflected, unless there’s symptom scores additionally. What I mean is that when I was first severe I was housebound but I could still self care and even cook basics, I could bathe myself but not wash my hair. I couldn’t clean the house but I could be left alone for a few days. I wasn’t confined to bed but was pretty much chair bound. I’m just not sure what people would tick if at that level when severe ME is presented as basically invalid levels and moderate means not in work.






This is the NICE severity guide, I’m not sure why they keep using NICE definitions if they don’t necessarily endorse them.

[QUOTE][/QUOTE]How severe was your condition before treatment with CBT and/or GET was offered/undertaken? (Please note the following are definitions created by NICE, these are not necessarily those accepted by the members of Forward ME)



Mild - People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.



Moderate - People with moderate CFS/ME have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for l or 2 hours. Their sleep at night is generally poor quality and disturbed.



Severe — People with severe CFS/ME are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after—effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

 

[Robert 1973]

I agree with @Trish and @Peter Trewhitt ’s concerns about the definitions of CBT and GET. They are completely disingenuous. If they refer to the treatments as “evidence-based” then they must describe the treatments as they are described in the (flawed) research from which the (dodgy) evidence is taken. You can’t describe a treatment as “evidence-based” and then invent a new definition of the treatment which does not accurately reflect the treatment that was tested.

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:

According to this [CBT] model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance). These beliefs and behaviours interact with the participant’s emotional and physiological state and interpersonal situation to form selfperpetuating vicious circles of fatigue and disability.

Page 17: https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/3.cbt-therapist-manual.pdf

That is the definition which should have been used in the survey.

With this survey, and other developments, I fear we are heading for a ghastly compromise where NICE reject PACE-type GET but keep a watered down version of CBT as a recommended “evidence-based treatment” for ME/CFS. There should be no compromise in evidence-based medicine between facts and falsehoods, or science and pseudoscience.

Whilst I would welcome the rejection of GET, keeping any sort of CBT as a recommended treatment would be totally unacceptable to me. CBT is not an effective treatment for ME and it would be deeply unhelpful to suggest otherwise.

Although I would not support it, if CBT were to be kept as a recommended therapy in the same way that it is used for other illnesses, it would have to be made clear that the PACE-type CBT has been rejected.

My suspicion is that any benefits that people with any sort of illness experience from CBT are no more than would be gained from a factsheet with useful information about condition management and a friendly person to speak to for counselling and emotional support.

So it's important to recognize that GET already uses collaboration between therapist and patients to set the goals and pace, that it increase exercise very gently and already uses heart rate monitors to guide the patient etc. It's this form of GET that patients find unhelpful. All these precautions are already applied and they don't work. So they can't form an argument against the criticism of GET/CBT. Just speculating here, but possibly the authors of the survey had this in mind.

This is a good point, but even if that was the intention (which I doubt), I don’t think it justifies providing misleading information. Garbage in. Garbage out.

 

[Andy]

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

Please confirm whether you have received or were offered CBT or GET or both in the UK since 2007.

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.

 

[adambeyoncelowe]

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.

The questions go on to ask if you completed the treatment or not (and why not). So if it was discussed and you or they decided against it, I think that should still count.

 

[MSEsperanza]

I agree with @Trish and @Peter Trewhitt ’s concerns about the definitions of CBT and GET. They are completely disingenuous. If they refer to the treatments as “evidence-based” then they must describe the treatments as they are described in the (flawed) research from which the (dodgy) evidence is taken. You can’t describe a treatment as “evidence-based” and then invent a new definition of the treatment which does not accurately reflect the treatment that was tested.

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:[...]
That is the definition which should have been used in the survey..

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 actually apply to the participant? (Too complex?)

(Edited for clarity.)

 

[Andy]

The questions go on to ask if you completed the treatment or not (and why not). So if it was discussed and you or they decided against it, I think that should still count.

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

Thank you for your interest in the survey. Unfortunately you are not eligible to take part as you have not been offered a course of CBT or GET in the UK since 2007.