News from Scotland

[Dolphin]

https://meassociation.org.uk/2025/0...in-place-of-scottish-good-practice-statement/
NHS Scotland adopts NICE NG206 in place of Scottish Good Practice Statement
May 29, 2025

Scottish Government announces withdrawal of the Scottish Good Practice Statement (SGPS) on ME/CFS in favour of NICE Guideline NG.206: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management: 29 October 2021.

The Healthcare Quality & Improvement Directorate inform us that they have told Scottish NHS & medical professional bodies that NG206 is now the formal guidance source for clinical practice and service provision for ME & CFS.

 

[dave30th]

Scottish Government announces withdrawal of the Scottish Good Practice Statement (SGPS) on ME/CFS in favour of NICE Guideline NG.206: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management: 29 October 2021.

What did the 2010 version say? I can only see the 2023 updated version. Did the initial version promote the CBT/GET regimen? (I assume so but does anyone have a copy of that document?)

 

[Dolphin]

What did the 2010 version say? I can only see the 2023 updated version. Did the initial version promote the CBT/GET regimen? (I assume so but does anyone have a copy of that document?)

 

[Dolphin]

Someone with CFS and Fibromyalgia was on Scottish tv https://s4me.info/threads/on-chroni...tors-in-sngception-2025-lee.44498/post-615207

 

[SNT Gatchaman]

On Bluesky Dr Janet Scott posts —

New role: I'm stepping in as Clinical Lead for Scotland's Long COVID Network!

We're now focused on making these services sustainable while expanding to address post-infection conditions more broadly.

Grateful to patient groups and colleagues whose insights drive this work forward.

 

[Cinders66]

 

[Cinders66]

 

[Cinders66]

Statement from long covid kids Scotland When Engagement Fails: Why Long Covid Charities Resigned from the National Services Scotland Long Covid Network.

https://www.longcovidkids.org/post/when-engagement-fails-why-long-covid-charities-resigned-from-the-national-services-scotland-long-co

“Challenges We Faced
The network’s structure and restrictive practices made meaningful engagement almost impossible. Key decisions were made without transparency. Representatives were reduced to passive observers rather than collaborators. Feedback was routinely left unacknowledged, unassigned, or deleted from risk logs with no explanation.

One telling example is the flawed national POTS pathway - developed over years and promoted as a flagship project - only to be abruptly retracted post-launch due to critical issues that could have been avoided through better oversight and lived experience engagement.

Even basic asks, such as circulating letters to Health Boards, issuing newsletters, or publishing reports, were stalled or blocked.

Essential information, including meeting minutes, updates, and presentations, was repeatedly withheld from lived experience members. The wider Long Covid community, who have a right to understand how decisions are being made, were left in the dark.

And all the while, time passed. Services struggled to open and then closed. Waiting lists grew. And the majority of children were left with nothing.”

….

“Why We Are Stepping Away
We have reached a point where continuing to sit at the table would mean endorsing a system that has failed, and continues to fail, the very people it was created to support.

Performative engagement cannot be a substitute for delivery. Lived experience cannot be used as a tick-box or shield.

We believe our time, energy, and expertise are better spent in spaces that value transparency, inclusion, and real patient-centred outcomes.”