Category: Scotland

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Be part of designing UWS research into ME and long COVID

UPDATE: The research team have let us know that they’ve received a huge response to this request and they now have the information they need. They’ll be in touch with people individually if they are eligible to participate in the study. If you got involved, thanks for your support! Researchers at the University of the

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Apply to join the UK’s ME/CFS priority setting workshops

Over 2,000 people with ME/CFS, carers and health professionals in the UK engaged with the recent survey from the ME/CFS Priority Setting Partnership.   Through three stages of participation, this process is aiming to define the top ten research priorities for people affected by this disease.    The process now has just one more step – and you could be part of it.   These

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NICE Retweeted #MEACTION UK's DEAR DOCTOR CAMPAIGN

NICE Retweeted #MEAction UK’s Dear Doctor Campaign!

On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign and shared their thanks in our work to educate the medical establishment about the new guideline. This is cause for celebration! This is the start of a real change that has begun in how we are

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New Black British support group seeks members with ME and Long Covid

Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences and create community, with the

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Join over 1,000 people and vote for your ME/CFS research priorities

Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians in the UK are all asked to take part. The ME/CFS Priority Setting Partnership is particularly looking for more people from ethnic minorities, carers and health care professionals to take part. So far: Just 4% of respondents are

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How the media reported on the UK’s new ME/CFS guideline

Media coverage of the publication of the new NICE guideline in the UK was impressive in its geographical spread and range of publications who reported on the story. The volume of articles shows the importance of the new guideline and highlights the increased awareness of the issues amongst the UK media.   #MEAction UK volunteers are

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NICE ME/CFS Guideline Published

Final NICE ME/CFS guideline published – find out the big news!

The National Institute for Health and Care Excellence (NICE) has now published its ME/CFS guideline and we are delighted that they have finally listened to the ME community in several key areas. NICE delayed publication of this guideline in August after concerns were raised by a few Royal Colleges. Instead, they held a roundtable event,

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