Thread by @meactionscot

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

@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 💪

.@Emma_Roddick joins the debate remotely. ‘Being disabled often means you have to become an activist to get help.’ Speaks about our points on healthcare education & talks about the amount of people who got in touch to ask her to speak (well done 👏). She’s sharing Morag’s story.

.@DAJCameron also shares stories of #pwME and says many contacted him. Need to support #pwME and also our carers and families. Interjection to remember children with #MyalgicE and failures of education. Patients are ‘abandoned and stigmatised.’ Highlights lack of services.

.@jackiebmsp says #MillionsMissing was a challenge to policymakers. Tells Amy’s story - a sadly familiar story of being told to push through. She provides facts on the economic cost of #MyalgicE and that medics think it’s rare & psychological. Asks to be joined up with #LongCovid

.@BeatriceWishart joins remotely & thanks us & @actionforme. Asks for pilot of #MyalgicE services & to consider island health boards. Must implement stakeholder review of the NICE guideline. Shares a young person’s story & highlights lack of data & understanding of cyp with ME.

.@GillianMacMSP welcomes the stakeholder report but says we must implement recommendations. Highlights recommendations against GET in NICE but that patients are still being recommended it. Asks minister to describe actions on pilots. We must be clear this is not a rare condition.

Debate has been extended due to amount of people who want to speak!

.@CGrahameMSP says she has been hearing about #MyalgicE since the days it was ‘yuppie flu’ & is grateful it has at least moved on from this. Recalls a colleague who suffered from ME & describes PEM. Shares a story from a mother of her son who got ill at 14. Support is self-funded

.@fincarson makes link with #LongCovid & talks about the great work of @actionforme and the Dumfries and Galloway ME & Fibro network, with a special mention of Eileen 👏 Talks about how networks & social activity can help with social isolation.

.@willie_rennie tells a story of meeting a #pwME while knocking on doors. A well deserved shout out to Keith Anderson, our one specialist nurse, who is in his constituency 👏 overview of the support Keith offers. Says we need research and references @PSPforMECFS 👍 and funding!

.@RealStephenKerr shares a story from David - a father/husband of his wife & daughter who have #MyalgicE. Was offered CBT & GET from NHS & has turned to specialists in England. Shares Jules’ story who has #severeME being told ‘it’s all in their head.’ Heartbreaking and powerful.

Minister @MareeToddMSP responds. Thanks #pwME for powerful testimonies 👏 Says she wants stigma & disbelief to end. ‘Working hard to progress’ coordinated care for #pwME. Recognises children’s right to education. Promises updated Scottish Good Practice Statement this month.

Interjection from @fincarson saying this has been going on and known about for decades and asks when appropriate care will be provided.

.@MareeToddMSP continues. Says @scotgov is talking to the Royal Colleges (we will ask about this!). Agrees there are things we can learn with #LongCovid. Importance of healthcare education and mentions @actionforme and Dr Muirhead’s module. Says they will continue to listen.

That’s all folks. There was lots covered in @MareeToddMSP’s speech so hard to get it all! We will share the clip soon.