Patient surveys and PACE: what patient surveys tell us about efficacy and safety of GET, CBT and pac

[Solstice]

Bit weird to see such different data from MEA and AfME surveys. Anyone know what the cause of that is?

 

[Karen Kirke]

Hi @Dolphin, hope you don't mind me butting in! Previous tweets about the paper are at this link : https://sage.altmetric.com/details/20072990/twitter so you'll find Jaime's and others' there. Different people picked out different aspects of the paper to highlight.

Many thanks @Tom Kindlon for tweeting about it today.

 

[jaybird1]

Excellent article. Thank you so much. I particularly like that you refute the claim of White and others that people who get worse with GET aren't doing it with a properly trained therapist. Great that you found evidence of the opposite - that the therapist run GET is worse!

A very well researched and reasoned article, and written with severe ME - you're a star. I salute you and hope it hasn't made your health worse.

As I have stated elsewhere on this forum, my GET was conducted by Bavinton and her Vitality360 team and she was involved in both Pace and NICE guidelines; I was made worse and lost my job so if she - the author and expert - couldn't make the therapy work who can??

 

[ukxmrv]

Bit weird to see such different data from MEA and AfME surveys. Anyone know what the cause of that is?

From memory AFME did one survey and use around 5 different possible responses i.e. much better, slightly better, neutral, worse, much worse then they change it for the next survey to 3 possible response better, neutral and worse

This was to hide the true effects. They had too many slightly betters and much worse and using the new scale this could be massaged away better.

I remember when the 2nd survey was published in their magazine it was accompanied with a pro-GET article written by a nurse who quite blatantly spun the results to suit her agenda.

This is one of the reasons AFME shouldn't be allowed to get away with the excuse of "that was then and we are better now" as the damage done by them lingers even now.

 

[Dolphin]

Hi @Dolphin, hope you don't mind me butting in! Previous tweets about the paper are at this link : https://sage.altmetric.com/details/20072990/twitter so you'll find Jaime's and others' there. Different people picked out different aspects of the paper to highlight.

Thanks. I had checked that but couldn't see any by Jaime.

I now see that it is 3 pages long and can see Jaime's tweets.

Also you can't see which contain extracts without clicking on them. If you or anyone else see any ones with extracts, please feel free to post them here.
Okay I see that on this new page you can see people who have posted extracts in their tweet rather than as an attachment.

 

[RogerBlack]

I am a health professional and have severe ME (housebound).

But you diddn't put that in the conflicts of interest bit!
Seriously though, thanks!