ME Association: Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS

E

Eagles

Senior Member (Voting Rights)
ME Association: Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS | 03 April 2019

https://www.meassociation.org.uk/20...urvey-on-cbt-and-get-in-me-cfs-03-april-2019/

Lady Margaret Mar, Chair, Forward ME.

We are pleased to be able to let you see the results of the recent survey conducted on behalf of Forward-ME.

All the raw data was analysed and inserted into a comprehensive report by Professor Helen Dawes and Her team at Oxford Brookes University...

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The conclusion includes –

“The results show clearly that cognitive behavioural therapy and graded exercise therapy are unsuitable treatments or management approaches for ME/CFS. The changes in severity and the worsening of symptoms are clear indications that the therapies being offered are having adverse effects on the health of individuals.”
 
#MEAction UK post with FMG statement: https://www.meaction.net/2019/04/03/cbt-and-get-survey-results-published-by-forward-me-group/

We also wrote our own summary here in a hopefully slightly easier to read format: https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/

Topline findings
A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that cognitive behavioural therapy (CBT) led to no change in their physical health; however those who reported a change were more likely to experience deterioration than improvement. More than 3 times as many people reported severe illness after GET than before, and almost 2 times as many reported severe illness after CBT.
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In conclusion, these results clearly show that GET and CBT are not safe treatments for people with ME, CFS or PVFS. For those who received both treatments, reported outcomes are even worse. The results parallel those of previous patient surveys (Geraghty et al., 2016) and reinforce the call for GET and CBT to be suspended as treatments immediately.
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Cinders66 said:
How will this be more influential than previous charity patient surveys on GET?
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Our take at #MEAction UK:
The vast majority reported being offered CBT or GET on the NHS, not privately, implying treatment was in line with the 2007 NICE guidance. This, coupled with a majority reporting starting treatment within the last 4 years, indicates that these results can be taken as an accurate assessment of the impact the 2007 NICE guidelines recommendations of CBT and GET are currently having on people with ME, CFS or PVFS in the UK.
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Read the discussion section of our article for more. It's up to date data that the NICE ctte chair person specifically asked for. Maybe not more influential, but it comes at a pivotal time and strongly reinforces previous surveys.

Also whilst not surprising for most of us here, I do still think the results are pretty shocking.
This I found particularly sad and angering:
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Cinders66 said:
How will this be more influential than previous charity patient surveys on GET?
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The survey was initiated at NICE demand so I guess they can't totally ignore it.
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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https://www.s4me.info/threads/forward-me-group-minutes-–-21st-november-2018.7575/#post-134680

It's been done by an academic. So maybe, it will have more weight.

Edit: crosspost with Gecko
 
Since I'm sure there's quite a few others on here who enjoy playing around with numbers, I'm attaching the appendices from the Oxford Brookes report in an excel spreadsheet. Data is just copied and pasted across from the PDF of appendices, but no point others spending time and energy doing that when I've already done it myself.
 

Attachments

What is the distinction between "CBT with GET combined" versus "GET combined with CBT". They clearly are different given the results, yet my alarm bell rings when I see that in both cases the number of people offered a course was 943, which seems to be an amazing coincidence. What am I missing? Or could there be a misprint?

Edit: I realise that the numbers mean that in both cases they must be the same cohort of 943 people. So now I'm still confused but differently! How can the same cohort fulfil analyses of two different treatment variants that deliver very different results?
 
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Barry said:
What is the distinction between "CBT with GET combined" versus "GET combined with CBT". They clearly are different given the results, yet my alarm bell rings when I see that in both cases the number of people offered a course was 943, which seems to be an amazing coincidence. What am I missing? Or could there be a misprint?

Edit: I realise that the numbers mean that in both cases they must be the same cohort of 943 people. So now I'm still confused but differently! How can the same cohort fulfil analyses of two different treatment variants that deliver very different results?
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Answering my own question, though it still leaves a question or two unanswered.

Looking at the full report, it clarifies that for the cohort of 943, who had courses of both CBT and GET, they were asked to report separately on the CBT component (reported as "CBT with GET combined") and the GET component (reported as "GET combined with CBT"). My first thought was that that might be incredibly hard to discriminate in some cases, especially where symptoms are delayed; I think that is going to be true. My second thought was that for purposes of this survey it probably makes little odds, given the results are so consistently bad in both cases.
 
think the key point is the previous surveys by AFME and MEA were getting long in the tooth so presumably a fresh take was wanted to show if the concerns highlighted in those surveys continued to apply to the approach currently being delivered by the NHS. Which it does.
 
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