News from Scotland

Good news.

D&G are looking to set up a ME/LC service. Consulting now with patients.

Sketchers on the ground, speaking and hopefully listening to people with experience, is a start.

 

Dumfries and Galloway?

 

Merged thread

Long Covid: NHS legal action launched by family of girl

https://www.bbc.com/news/uk-scotland-north-east-orkney-shetland-68017038

The mother of an 11-year-old Aberdeenshire girl with long Covid has launched a legal action against their health board, in what lawyers claim is the first case of its kind in Scotland.

The action alleges a number of failings by the health board.

These include claims that requests for Anna to be referred to the specialist paediatric services of immunology and neurology were refused.

It also claims no further help was offered after Anna was diagnosed with Chronic Fatigue Syndrome (CFS) and Paediatric Acute-onset Neuropsychiatric Syndrome (PANS).

And it says these failings "could have been avoided had NHS Grampian followed contemporary guidance on diagnosis and treatment".

"They have destroyed my family over the last four years. There is nothing more they can take from us."

Ms Goss added: "I don't want this to happen to other young people."

 

Brave family, and kudos to the lawyers who are working probono

 

ME services at 'rock bottom' in Scotland, say campaigners

"Services for people with ME are at "rock bottom" after the death of Scotland's only specialist nurse, campaigners have warned.

Myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS), causes extreme tiredness.

The charity ME Action says Scotland now only has "pockets of provision" based on "outdated" models of care.

The Scottish government says it is committed to creating a more equitable service for those with ME/CFS.

The condition causes extreme tiredness and can leave sufferers bedbound for months, or even years, at a time."

https://www.bbc.co.uk/news/uk-scotland-68316097

 

Tiredness...

 

https://www.cso.scot.nhs.uk/toolkit-now-available-to-help-me-cfs-researchers/

Toolkit now available to help ME/CFS Researchers
Posted by:Julie Simpson - Posted on:May 23, 2024

Following the establishment of a UK Clinical Research Collaborative Research Working Group on ME/CFS, government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit.

The “Researcher Toolkit” illustrates funding streams available for ME/CFS research, setting out:

• UK government research funding opportunities
• Support is available for researchers to help with their application
• Guides to embedding patient and public involvement
• Resources on developing high quality proposals

On the same page, you can also find:

• information on charity funding opportunities
• information on how to get involved with research for people with lived experience of ME