Action for M.E.'s big survey, 2019

https://www.surveymonkey.co.uk/r/afmebigsurvey

Just to highlight this bit

So Action for ME, a charity that are meant to represent pwME, have created a survey with so many questions that they put a warning on it that it might be too much for pwME to complete. Something seems wrong with that idea to me (and not just for AfME, any charity that does this is doing it wrong - if it needs that many questions then have multiple, shorter surveys).

 

While they are getting there, they still don't quite get the idea of PEM

No mention of an exertion limit, so of the possible answers

if I was being truthful and answering the letter of their question then I would answer "Yes, sometimes". If I was answering how their question should have been asked i.e. "Do you experience PEM after you have undertaken too much mental or physical activity?" then I would be answering one or the other of the first two answers.

 

There can be good reasons to doing a single longer questionnaire. eg: If it was multiple shorter surveys then we wouldn't be able to say that certain answers to question 3 correlate with certain response to question 20.

I've not looked at this questionnaire so don't know if that might be an issue.

Can't you save your answers half way through with survey monkey?

Looks like there's an option to do this (https://help.surveymonkey.com/articles/en_US/kb/Can-a-survey-be-saved-halfway-and-finished-later) but I don't know if AfME used it.

 

One possible answer is

Internet based delivery of CBT anyone?

 

Then lets hope that they realise, and take into account, that their survey design excludes more seriously affected patients.

No, that isn't possible with this survey.

 

Unfortunately surveymonkey does not let you save and return to a survey- a method where you could do this would have been ideal as you could have broken it down into sections and done a bit at a time. I suppose a more complex interface would have been expensive to set up?
ETA hadn't read full thread re option for this - apologies

 

Yes!! that and some crutches.

 

Caution - I may be a little grumpy right now.


So they've deliberately chosen a survey platform that doesn't meet a basic requirement of PwME, the ability to stop and pick up later when able.

They've deliberately, presumably, designed a survey that even with their apparently very limited understanding of ME they feel the need to warn people about the length.

Over the years it's become apparent to me that they know nothing about ME, care less, and whatever the original aims of the 'charity' they are not on 'my' side, that they are completely incapable of being so.

They're an organisation that I'd not trust to know what I had for breakfast as I have no confidence this information wouldn't be sold to the DWP.

They're an organisation that feels no need to answer basic questions, by PwME, about their own policies and literature.

So yep - I'm going to do their survey, shortly after the next ice age.

 

@Andy, Just took a look at the first page and it says this there:

Might give it a try later and report back if it takes you back to where you're up to, but not right now as struggling already today.

 

The survey done in 2014
https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf

based on the results of that survey

that worked well.
maybe sort out existing problems first?

 

As a designer of these sort of things (marketing surveys) if it takes more than 12 min to complete it’s too long ..end of ...I’ll time myself and report back. 40 questions seems on the long side.

I also have the same disquiet as @Wonko so will not be giving my contact details.

 

Ok

Just completed it...it took 22 minutes and I didn’t need a break. I filled in some of the sections on GET and employment reasonably well, but there were sections I didn’t have to fill in because I wasn’t under 21 or claiming universal credit etc. If you had to fill these in it would take 5-10 min more.

I’m mild/moderate so I would imagine that others will take longer ...this is too long imo with too many verbatim sections. They could shorten it quite easily to be in a 10 min window and attract more respondents.

I chose not to donate or be a volunteer at the end

 

I was concerned by @Action for M.E.'s version of the Functional Ability Scale.

They suggest that people at 30% functional capacity might be able to go for a short walk outdoors and that at 70% you might find a walk or swimming helpful.

Where is the evidence for this?

 

Here it is, for reference.

 

It will be inaccurate because severely affected won't fill it in.

 

I will not participate in this survey because @Action for M.E. has shown to twist results and thus harm pwME. I simply don't trust them.

This made me angry:

Sure, a "specialist" will be the salvation. Or a psychotherapist. Or a priest.
Those dumb peasants!

Given the existence of great diagnostic criteria like Oxford or Fukuda, it is not surprising to find non-ME people who might find GET great. pwME won't find it great.

 

And, of course, if they have not self-prescribed a form of GET, they can always be dismissed as idle b...…. who just will not make any effort to make themselves better.

 

I think a non understanding of PEM underlies this.
My daughter on this scale is 25-30.
On a good day, yes she could potentially walk with a cane to the top of our road and back, resting en route ( the road is approx 70- 80 m to top).
She would then not be able to do much else for the rest pf the day, and for the next 1-3 days not do very much at all.