Category: United Kingdom

NICE guideline to be implemented in Scotland

NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular contact with the Scottish Government about the change needed in Scotland. Now that the guideline has been published, the government has got in touch to involve us in a development. What is the plan?The government plans

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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 Committee Member Community Call Review

Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline process and answer questions. Adam Lowe is a person with ME and has been supporter of various ME organisations, including #MEAction UK and Science for ME. He was one of five lay members on the committee.

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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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UK Parliamentary Group to discuss new ME/CFS guideline

The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 – 3 pm on 24 November 2021. Email your MP asking them to attend, and help to ensure the new ME/CFS guideline is implemented. Find their contact details at: https://members.parliament.uk/FindYourMP This meeting will focus on the

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