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

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/

 

How will this be more influential than previous charity patient surveys on GET?

 

It won't have any influence. The only thing that can be said about it is it's on record.

 

Our take at #MEAction UK:

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:

 

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.

 

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?

 

Good results to take to UCL appointment in May for teen with ME, who is being threatened with discharge if she refuses to undertake their GET/CBT regime.

 

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.

 

If this was a drug it'd be on the front page of newspapers tomorrow. It won't be in the papers at all, of course. We live in a crazy world.

 

Is that actually in the document? They seem to have left an "un" off the front.

 

yes, well spotted I just copied and pasted it from the MEA site

 

Can someone let them know?

 

https://twitter.com/user/status/1113730433173393409

 

Looks like it has been sorted:

 

Also linking to my recent post, which I think is relevant:

https://www.s4me.info/threads/me-cf...esting-of-get-in-pace-trial.6801/#post-157554

 

https://twitter.com/user/status/1154784310634930176

https://twitter.com/user/status/1154785467377889281