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

Honestly I think this survey has different value. The MEA survey was obviously much more in depth, done over a longer period of time, and people were able to send in paper copies as well as respond online.

What I hope this survey can give is a little more insight into adverse effects around CBT/GET, and additional qualitative data on their impact on symptoms/benefits/work. I also think that by being much shorter (the MEA one was 228 questions long!) more people, and especially more of those with cognitive difficulties, will be able to take part.
The MEA 2012 survey had 1428 respondents in 4 months, this one has had 1000+ respondents in 4 days.

So, although there are many limitations to the data this survey will produce, I think the potential to gain some more recent insights from it is a positive. And that it will add weight to the evidence we already have that will inform the NICE GDG deliberations on CBT/GET.

 

Interesting that the 2012 one had 'only' 1428, and the new one is over 1000 already - probably shows how much more the patient population is connected via social media now.

And I'm just interested to hear the argument against the survey to understand why it's seen as different, given that the 2012 survey seems to be pretty well accepted as useful information and I can't see why this one wouldn't be as well (with the proviso that any survey will have pros and cons, and that they are unlikely to be able to reveal the absolute truth).

 

Both authoref by Crawley

 

Hi

Just wanted to add that the 2012 survey took us THREE YEARS to collate and then produce a report. And we had hoped the report would be one of two - the second part being about self-management. But in the end due to the very large drain on our limited resources, it was decided to just stick to the report we published in 2015.

I do think it would have been possible to create a better/easier online survey that asked more questions than the current one from ForwardME/NICE. Back in 2012 I think there wasn't really the focus to our survey that was needed. And we had a lot of paper surveys which all needed collating with the online responses.

Of course some people wanted to have paper versions for the current survey, but we just didn't have time I am afraid. The University need time to generate the report, it then needs reviewing before being presented to NICE on March 1st I think.

But that 2012 MEA survey was being collated when I came on board as a volunteer and I have never been so frustrated over generating a report before. It was hell. But, yes, I think if we ran something similar using today's survey generators we could attract more responses and have the results independently assessed and even seek publication in a relevant journal.

All the best

Russell

 

If for one would support this idea (easy for me to say given that I probably wouldn't be involved in all the work I know).

 

Don't forget that Healthwatch are an organisation which should be tasked with doing this, and I believe they recently were awarded more Government money for that purpose.

So why did Peter Barry not appraoch Healthwatch England?(https://www.healthwatch.co.uk/our-staff)

" Imelda is passionate about championing patients’ needs and ensuring that their views are listened to."
Our Deputy Director - Neil Tester
Neil has led our policy, communications and external affairs work since 2015 and became Deputy Director in April 2017. He has a focus on developing how we maximise our impact and show the difference it makes to health and social care services when people talk to their local Healthwatch.

Neil started out in journalism on The House Magazine and The Parliamentary Monitor before moving into communications, marketing, policy, strategy, public affairs and network development in a range of leadership roles in membership organisations including the Chartered Society of Physiotherapy, in federated charities such as Girlguiding UK and Relate, and in the public sector.

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Moderator note:
A new thread has been created for further information on Healthwatch and discussion of how it may be useful for ME research of this sort.

 

Well I would argue that they do it anyway? You have to live and to live without support means you have to gradually increase exercise? The Exercise is a bit of a misnomer anyhow due to the fact no one is given exercise so none of it fits. In reality they have a patient with CFS they get funding for CBT and GET so in effect everyone does it?

I know these points are a little tong in cheek but in reality this is what happens and we should stop playing by the rules that manipulate us into a corner of not action?

They have for 30 years manipulated the reality of this disease by splitting hairs and we keep letting they by fighting the detail. They are not honest or true and we have to work with those facts.

 

NICE are aware of how their guidelines are used we have told them enough times. With this knowledge they have to work making them safe and they can and should work from that viewpoint, they can and should insist on the reporting of harm and that is to say - if the patient looses the ability to do what they had even for a short time this is harm due to PEM.

 

You are right Tilly. It seems we are being expected to keep 'reinventing the wheel.' Again, again and again....

That could be because they are so far behind the curve of the available information, or they don't know their own processes or anyone ones else's......

Or they don't want to know because it's too difficult for them, or that they have been hijacked......

...and at the end of the day, all we are asked to do all these things, talk, attend and do surveys; and play the game, play the game.

This ties up all our available energy and capacity, limiting us to really effect any change or influence, ....possibly......

But if this situation is understood and we see it and peer through it, we can and will effect change.

We have to keep persisting and champing at the bit until they get fed up and relent to our needs, action which they call 'vexatious'.



Effectively, keep bang our collective heads on that NICE NHS wall.

Well that's my personal theory anyway. Others are welcome to disagreed!

 

https://twitter.com/user/status/1089154942546395137

 

Deadline to complete the survey is today!

https://brookeshls.co1.qualtrics.com/jfe/form/SV_cwGfVEpqF7CmdTL

 

https://twitter.com/user/status/1090899133488078848

 

Final evening boost for this, just a few hours left to complete the survey:

https://brookeshls.co1.qualtrics.com/jfe/form/SV_cwGfVEpqF7CmdTL

 

2310 people completed the survey. Not a bad response!
Now over to Oxford Brookes Uni to do the analysis and report. Should be published by the various Forward ME charities at the end of Feb/beginning of March.

(@Andy I'm not sure how to change the title of the thread from open to closed, could you do this?)

 

Am i just becoming increasingly cynical?

What is the expectation from this survey - there are previous larger ones and papers including Keith Geraghty' s provide a peer reviewed evidence base.

The survey itself is poorly worded- excluding many from completing it.
It was too long for many to complete
It has a very tight timescale - again capable of affecting participant numbers

What will it say that has not been said already?
By its parameters and timescale will it tell a different story.
Is it simply to be seen to be doing something and tick a public consultation box ?

Hopefully my cynicism is misplaced.

 

To put things into context, I've gone back and looked at the ME Association survey from 2012.

This ran for 3 months, and was completed by 1428 respondents. Over three sections, it asked 228 questions in total.

Link to survey report, https://www.meassociation.org.uk/wp...No-decisions-about-me-without-me-30.05.15.pdf

Also, Tom Kindlon's 2011 report on reporting of harms, http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx, says "Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT", so those 8 surveys had an average of 542 respondents each, and the 5 surveys mentioned 361 each.

So it seems to me, even as someone who couldn't honestly fill it in due to the survey's parameters, that in 20 days to get 2310 respondents is pretty impressive. And are there any larger ME patient surveys out there? In my quick look for this post the MEA's one, of 1428, seems to be the largest one I can find.

 

OK, yes there is a larger survey, the MEA's one from 2010 on "What people with ME/CFS and their carers want from the UK’s health and social services". This says "Overall, 4,217 people took part – making this the largest ever survey of patient and carer evidence on issues relating to ME/CFS management. A total of 3,494 people took part using the on-line version. Another 723 completed the paper version. Almost all of those completing the paper version (97%) were members of The ME Association. Most people who completed the on-line version (77%) were non-members.".

This survey was open for 4 months, so, again, I would argue that the Forward ME survey's response, in the time allowed, was impressive. This survey asked about the "Affects on symptoms of 25 therapies tried by respondents" but it's not the survey, I believe, that Keith Geraghty looked at in his paper, that was the 2012 one with 1428 respondents.