#MEAction Scotland Profile picture
May 19 4 tweets 4 min read Twitter logo Read on Twitter
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.

Thread 🧵 [1/4]
gov.scot/publications/m…
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.

We'll be calling on @MathesonMichael & @jenni_minto to take this work forward. [2/4]
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.
[3/4]
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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More from @meactionscot

Feb 2
We are here @scotparl ready to see which MSPs stand up for #pwME in #Scotland in @SueJWebber's debate today 💪

Brilliant to be joined by #pwME, their families, and colleagues from @actionforme and @LCKScotland

Watch live on Scottish Parliament TV: scottishparliament.tv ME Action Scotland volunteer Karima outside the Scottish Par
@ScotParl @SueJWebber @actionforme @LCKScotland Meant to say, starts at 12.45pm! Can you tell we're excited 😅 Will do our best to live tweet on this thread as we go.
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 💪
Read 17 tweets
Oct 2, 2022
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
Read 4 tweets
Oct 1, 2022
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 ❤️
Read 4 tweets
Sep 30, 2022
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 🧵

Starting with @BrianWhittle - the first there! @ScotTories MSP for South Scotland. ME Action volunteer Helen stands with Brian Whittle MSP outs
Jackie Baillie, @jackiebmsp, MSP for Dumbarton and @ScottishLabour Deputy Leader and Spokesperson for Health, Social Care and Equalities.
Alex Cole-Hamilton, @agcolehamilton, MSP for Edinburgh Western and leader of the @scotlibdems.
Read 20 tweets

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