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

Russell Fleming said:
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.
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I don't think GET or anything involving incremental increases in activity has any place in the NICE guideline at all. There is no research evidence supporting any of them. I would include pacing as a management tool not as a treatment. (edit: based on the principle of 'first do no harm').

But then I think any clinics run by therapists should be shut down and replaced by consultant led clinics with nurse practitioners to help people with pacing, symptomatic medications and benefit applications etc, as the Parkinsons' disease clinic in my area provides.

Anything that just tells the current therapists a different name for what they should do and lets them get on with it will just perpetuate the problem, and palming us off on IAPT would be just as bad.
 
Gecko said:
Out of interest, do you understand what they meant by "too positive"? Were they attempting to preempt who would and wouldn't respond?
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I assume now that they meant that I wasn't, obviously, depressed and so was unlikely to get any benefit from the CBT that they offered to other patients, so, yes, I would assume that they were preempting me not responding.
 
Andy said:
Ellen Goudsmit is crying on the forums Facebook page that the survey doesn't distinguish between the "right" and the "wrong" CBT, and therefore it is invalid research...
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I have little sympathy for this since it's generally the CBT folks that are intentionally trying to blur the distinction between the two. Since pleading by patients changed nothing at all, it appears that they must learn through negative consequences.
 
strategist said:
I have little sympathy for this since it's generally the CBT folks that are intentionally trying to blur the distinction between the two. Since pleading by patients changed nothing at all, it appears that they must learn through negative consequences.
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According to her, by not distinguishing between the two, the reports from those patients who received the "positive effects" of the "right" CBT will cancel out the reports from those patients who received the "negative effects" from the "wrong" CBT, thereby leading to a null result. She 'advised' me to look up the definition of average....
 
Andy said:
Ellen Goudsmit is crying on the forums Facebook page that the survey doesn't distinguish between the "right" and the "wrong" CBT, and therefore it is invalid research...
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Although I have sympathy for the idea that there is a 'right' and a 'wrong' form of CBT for people with ME (the 'right' being CBT to help people who need it to adapt to their long term disabling medical condition and the 'wrong' being PACE type CBT design to cure the underlying condition), there is no evidence so far that the 'right' form of CBT is helpful in ME, and PACE itself provides clear evidence that their 'wrong' approach to CBT is not helpful.

So at present there is no place for recommending any form CBT in the NICE guidelines. I would argue further that the new NICE guidelines should clarify the difference between CBT as an aid to adapting to your condition, which has not been examined in relation to ME, so it can neither be recommended or rejected, and CBT as a treatment for ME. NICE should further say that CBT as a treatment for the underlying condition is not appropriate for ME and the evidence shows it does not work.

It is unfortunate that NICE's previous guidelines and the CBT advocates have, either through ignorance or to deliberately mislead people, obfuscated the distinction between the two approaches to CBT. The previous NICE guidelines misinterpreted the evidence from such as PACE as support for the 'right' form of CBT, whereas these studies were using the 'wrong' form of CBT, and do not even offer any meaningful support for that.
 
Andy said:
According to her, by not distinguishing between the two, the reports from those patients who received the "positive effects" of the "right" CBT will cancel out the reports from those patients who received the "negative effects" from the "wrong" CBT, thereby leading to a null result. She 'advised' me to look up the definition of average....
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I suppose this will depend on how the data from the survey is analysed/reported.

If the 'right' form of CBT is helpful in ME then a percentage of respondents, if offered this, might report a positive effect. When contrasting this with negative effects from the 'wrong' form of CBT, if figures are just added together then the positive might cancel out the negative, however if the results are reported as x% improved, y% stayed the same and z% deteriorated this is still useful evidence. It tells us that CBT as currently experienced by people in the UK is helpful for some, irrelevant to others and harmful to others.

NICE should interpret this as not supporting recommending CBT to all people with ME as they effectively do at present, and further research is required to work out what if anything is helpful for whom, especially given current the confusion in the UK by what is meant by CBT in relation to ME and the current error rates (potentially 40 to 50%) in ME/CFS diagnosis.
 
My personal experience of CBT was of the 'right' form, and on the last day of the intervention I would have reported it as being helpful, but shortly after completing the treatment I experienced a significant relapse in my ME, going from moderate to severe.

So I felt I could have reported it either way in the current survey: I could have described it as helpful, regarding the subsequent relapse as an irrelevant coincidence, but my decision was to answer that at the start of the CBT I was moderately impaired, but in the aftermath I became severely impaired with significant new symptoms.

[added - given the crudeness of this survey, perhaps the only option with the time and resources available, all it will be able to offer is a hint at the rate of adverse responses.]
 
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Andy said:
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.
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Because they think they're treating depression and/or anxiety?
 
I do see that there are problems with this survey. The main problem is probably that there will be so little time to get people to complete it though. It's not much time to make people aware of it.
 
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Andy said:
Ellen Goudsmit is crying on the forums Facebook page that the survey doesn't distinguish between the "right" and the "wrong" CBT, and therefore it is invalid research...
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I am surprised by this survey. It isn't 'research' in any meaningful sense. It cannot provide any quantitative evidence because of all the confounding factors with this sort of approach to gathering data.

I think it can only be use as a pointer to adverse experiences - and even there it is weak. I wonder who actually commissioned this.
 
Jonathan Edwards said:
I am surprised by this survey. It isn't 'research' in any meaningful sense. It cannot provide any quantitative evidence because of all the confounding factors with this sort of approach to gathering data.

I think it can only be use as a pointer to adverse experiences - and even there it is weak. I wonder who actually commissioned this.
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To answer your question of who commissioned it:
Latest ForwardME minutes said:
Dr Charles Shepherd had some important information about the NICE guideline. He had been in e-mail contact with Peter Barry, the Chair. He wants us to produce some new patient evidence on CBT and GET. The time limit for producing this is fairly short; they want it by March 1st 2019. What they would really like is another survey like that done by the MEA in 2014, but up-to-date and including evidence of harm (particularly from GET) supplied by the patient community. Charles had put together a skeleton for the survey which he would e-mail round to members. But developing it would mean a lot of work – so we need to work together on this. Was there someone who could organise an online survey using Survey Monkey or something similar?
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So all it would appear to be is a rushed attempt to give Peter Barry some updated information on patient's experiences with 'treatments' in the NHS.
 
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Esther12 said:
I do see that there are problems with this survey. The main problem is probably that there will be soon little time to get people to complete it though. It's not much time to make people aware of it.
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Which seems deliberate. Also they have a full decade of those guidelines being implemented in clinics around the country. There should be plenty of data on effectiveness as well as feedback. When they voted in 2017 to continue the guidelines, they were expected to make that determination based on real-life data, not on the original assumptions and flawed research. Governments are expected to make policy based on real life, not assumptions. Where's the data?
 
rvallee said:
Which seems deliberate. Also they have a full decade of those guidelines being implemented in clinics around the country. There should be plenty of data on effectiveness as well as feedback. When they voted in 2017 to continue the guidelines, they were expected to make that determination based on real-life data, not on the original assumptions and flawed research. Governments are expected to make policy based on real life, not assumptions. Where's the data?
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These 2 studies were published:

BMC Health Serv Res. 2017 Jul 14;17(1):488. doi: 10.1186/s12913-017-2437-3.

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England.
Collin SM1, Crawley E2.
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https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3. This

QJM. 2013 Jun;106(6):555-65. doi: 10.1093/qjmed/hct061. Epub 2013 Mar 28.

Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
Crawley E1, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/
 
rvallee said:
Which seems deliberate. Also they have a full decade of those guidelines being implemented in clinics around the country. There should be plenty of data on effectiveness as well as feedback. When they voted in 2017 to continue the guidelines, they were expected to make that determination based on real-life data, not on the original assumptions and flawed research. Governments are expected to make policy based on real life, not assumptions. Where's the data?
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I agree that NICE is problematic but I think it is a mistake to think there is any 'them' with a particular attitude or policy. NICE is just a framework that gets used by anyone who gets roped in. Nothing is really deliberate here. And the individuals involved in this episode are pretty much all on side with the S4ME consensus - Peter Barry, Ilona Findlay and Charles Shepherd. Last time the committee was dominated by the estalishment professionals and we are still left with the fallout but that situation no longer holds. Doing a survey seems a reasonable thing to do but my concern is that it will suffer from exactly the same uncertainties as th trials in such a way that it is not going to provide any new useful evidence. Tom Kindlon's survey seems much more relevant.
 
We have been advised this morning that there have been over 1,000 surveys completed which is pretty amazing as it was only launched last Friday. Thanks to everyone who has been able to take part.

There's still time to register your experience of CBT and/or GET in the UK. Deadline: 31st January 2019.

ME Association Blog:
https://www.meassociation.org.uk/20...w-cbt-and-get-patient-survey-11-january-2019/

Direct Link to Survey:
https://brookeshls.co1.qualtrics.com/jfe/form/SV_cwGfVEpqF7CmdTL

Russell
 
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