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Category Archives: United Kingdom

All I want for Christmas is #ScienceNotStigma

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This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and ...

Community Roundup – Telling Our Story to the World

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Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME). In our fall roundup, you'll be inspired reading about the work and accomplishments of some of our community heroes. Support the #MEAction community by donating to our #GivingTuesday campaign this Tuesday, Nov. 27  where ...

Advocacy Round-up – A Season of Protest and Petition

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The #MEAction community has dug in deep this fall to undertake the incredibly important work - and heavy lifting - of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily ...

Sept & Oct — Research Roundup

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The end of September was a whirlwind! Between the CDC's website work, the CDC's awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn't much time to devote to breaking down the science.  If you'd like to see a quick run-down of ...

NICE Appoints Committee Rife with Bias – Take Action!

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What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines ...

UK: MPs fight for a crucial parliamentary debate on ME

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Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial ...

The final NICE scope is here: read our analysis

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N.b. We wrote this article prior to more of the appointments for the guideline development committee being made. Some of these appointments are inappropriate and we are working on a response to that. There are still some committee vacancies that have yet to be filled. We’ll update everyone as soon ...

#MEAction keeps up the political heat of ME in the UK Parliament

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A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, ...

UK: More than 250 GPs Attended ME Workshop at the RCGP Conference

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A week after the recent RCGP Annual Primary Care Conference & Exhibition held in Glasgow on the 4th – 6th October, it seems appropriate to reflect on the impact of the conference on educating GPs about myalgic encephalomyelitis (ME). The RCGP Conference is the must-attend event of the year for GPs ...

Meet with your MP about ME – Our Toolkit shows you how!

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Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care and investment in biomedical research for ME. Gaining MPs support in lobbying for change is vital to our success. So whether you are a person with ME, their carer, friend, family ...