This week, @scotgovhealth published findings from an analysis of surveys issued to NHS Health Boards in Autumn 2022, to understand existing support for #pwME (or lack of, as we would argue) and implementation of the 2021 NICE guideline.
Pleased to see the publication of the report, & the acknowledgement that the survey was a direct result of #MEAction Scotland's meeting with the then Cabinet Secretary for Health, @HumzaYousaf.
Disappointing to see that 4 Health Boards chose not to respond - @NHSHighland, the largest Board geographically, @NHS_Lothian, one of few identified as having a specific support pathway, @NHSaaa & @NHSGrampian. Also, not all of the 10 who did respond answered all questions.
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We'll go through the report in detail & share a full response when we can (many of us are recovering from last week), but it's clear it conveys the inconsistent approach to #MyalgicE across #Scotland & supports our call for @scotgov funding to increase education & resource. [4/4]
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We’re off! @SueJWebber opens the debate, sharing @therealmecfs’s powerful words. Jo’s here with us in the chamber today ❤️ Also sharing a story of a #pwME post-Covid. You are all with us in spirit 💪
An #MEAction Scotland volunteer has shared her thoughts on #MillionsMissing Scotland 2022 and the unseen price that people with ME pay for their attendance:
Millions Missing
Well that was great.
People with ME, partners, friends, dogs.
Wheelchairs, scooters, chairs and a bed
The bed for all our friends who can’t be here.
Some sent words, their voices for one moment as loud and clear
As any healthy person.
And MSPs. Wonderful, wonderful,
To see so many and hear their support.
They came, they spoke, they signed the pledge,
They saw and heard us
Now for the fallout.
Because that was all our energy.
There’s none left for cycling home
Or having a shower or cooking a meal
Or phoning parents or meeting friends.
We’ve all spent many hours in that bed.
The price for today is another sentence
The awful reality of the price #pwME face for protesting. @therealmecfs is documenting the post-exertional malaise/symptom exacerbation she’s experiencing post #MillionsMissing
We don’t encourage anyone to push themselves into a crash but Jo was determined to join. Rest well ❤️
For ease of reference in future (for you and for us!) - a thread of all the MSPs who supported #MillionsMissing Scotland and chatted to #pwME/signed the pledge/spoke to the crowd 🧵