UK: ME Association: Count ME In [survey]

"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.

 

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.

 

yes me too

the other pretty silly thing about it is that there is no 'back' button. Not good for people with cognitive difficulties, i made mistakes but cannot correct them as no way to go back

 

Done . i agree with trish as to the grouping .

 

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.

 

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.

 

Struck me as too vague and general to gather anything useful

 

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.

 

Done.

 

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...

 

The ME Association on Twitter.

"Support the ME Association's #CountMEin campaign - please keep sharing, thank you! A major campaign to reach people living in the UK, Channel Islands, or Isle of Man, who think they might be affected by symptoms – or who have a diagnosis – of #MECFS or #LongCovid "

 

Both barrels are always good to deliver with!

 

The ME Association are still sending out emails highlighting this survey