Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

[Barry]

I tried the save function and leaving the tab open but unfortunately neither of these options worked for me. I got halfway through the survey which was a lot of effort and then lost everything after taking a break

Given this is intended for severe pwME, that is an appalling state of affairs.

 

[Trish]

I suspect it was set up in a hurry and not properly tested before going live. I think Keith Geraghty has been given a very short time span to do the research and report to NICE.

 

[NelliePledge]

I suspect it was set up in a hurry and not properly tested before going live. I think Keith Geraghty has been given a very short time span to do the research and report to NICE.

Agreed but NICE must have experience of seeking input from seriously ill patient groups. There should be a service standard for their questionnaires. The IT issues are fairly basic requirements that should be capable of being delivered even on a rush job.

 

[Gecko]

Tweet from Keith at 3:51pm today (Sunday 17th 2019) saying:

Big response to our Open Survey on your views with Severe ME/CFS; I know some people have had issues with save function sorry. We will CLOSE survey in a few days [around Wednesday 2oth-Friday 22nd Nov] I think, we have enough data already, so just giving people time to complete

Glad to hear they've had a big response, really hope they've had enough input from those with severe ME, and that those who want to have had enough time to respond.

 

[Sly Saint]

 

[Amw66]

Seems like some similar issues to the paediatric survey.
Perhaps in future those whom the survey is aimed at could advise re a range of formats for information capture.
Sadly a one size fits all doesn't t work