UK: ME Association: Count ME In [survey]

Andy

Andy

Retired committee member
"We are asking people to complete a short survey about their health experiences and the support they have received from the NHS and social care services.

This anonymous survey will help us to:

  1. Improve NHS and social care services
  2. Raise much-needed awareness
  3. Better understand how people's lives are affected
  4. Help people find support, learn more about symptoms, obtain an accurate diagnosis and find specialists"
https://meassociation.org.uk/count-me-in-me-association-survey/
 
Done.

Facebook comments highlight the cut off from moderate to severe as if sound and light intolerance only happens to severe +.

Other comments along lines of: not sure what is going on with this ‘campaign’. A lot of doubt and cynicism out there.

I know NICE guidelines use these descriptors too but I’m struggling with the severity descriptors as they don’t fit.
 
Ebb Tide said:
I got stuck as it asks whether you have a close relative or friend with ME, which I do, so said yes. Then asks if you have permission to fill it in for them which wasn't what I was doing and as there was no way to change my response, I gave up.
Click to expand...

They definitely don’t make it clear here in advance that this section contains two separate pathways, one for people to fill in the form relating to themselves or one relating to people completing it for someone else.

I ended up using the ‘other’ sections to add comments to clarify what I saw as ambiguity in the options which wasn’t what it was intended for so aspects of my responses may get lost in the analysis.
 
I think even with a short, basic questionnaire, the value will be in showing what people in different parts of the country report. It can then hopefully be capable of being used as an advocacy tool with MPs and with ICBs particularly in those areas that have made zero effort to address the new guidelines.
 
NelliePledge said:
I think even with a short, basic questionnaire, the value will be in showing what people in different parts of the country report. It can then hopefully be capable of being used as an advocacy tool with MPs and with ICBs particularly in those areas that have made zero effort to address the new guidelines.
Click to expand...

The location information requested is only regional, though, so wouldn’t have enough granularity to draw conclusions about NHS commissioning areas (which mostly seem to have retreated to the familiarity of PCT/county boundaries).
 
I thought, on balance (and I don't do balance very often where the charities are concerned) was it's an ok survey actually - but echo some of the points above; I too fall above their 'moderate' but not bad enough for severe - but, I guess one thing we know is that everyone is different and can't be pigeonholed however much people try with us.

It's a shame that it's not a joint survey with other ME Charities that could get a wider reach as not everyone will be following the MEA, but there's a fair bit of traction online in the areas I lurk so it's getting to a wider audience.

It sounds like there is someone new at the MEA that has launched this (with the wording 'energy sapping' as part of the description, which doesn't go down too well), so perhaps this is the start of a bit more activity from them to shake things up a bit..time will tell.
 
Shadrach Loom said:
The location information requested is only regional, though, so wouldn’t have enough granularity to draw conclusions about NHS commissioning areas (which mostly seem to have retreated to the familiarity of PCT/county boundaries).
Click to expand...
Yes of course I hadn’t registered it was only regional, should definitely have been down to ICB level I don’t think that would have been too hard.
 
Done. They may regret asking, as I completed while fully PEM and more than a little grumpy

"What improvements would you most like to see to the NHS that could improve your quality of life with regard to ME / CFS?"

Not sure they were expecting an 8 point bulleted list...:whistle:
 
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