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Category Archives: United Kingdom

ME Services in the UK Not Fit for Purpose

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A recent survey conducted by #MEAction UK found that UK specialist myalgic encephalomyelitis (ME) services are not fit for purpose. Areas investigated included: Management strategies Experience attending a clinic Cognitive behavioural therapy (CBT) Activity management   The survey was conducted to provide evidence to the National Institute for Health and Care Excellence ...
NICE Call for Evidence response #MEAction UK

NICE Called for Evidence: Read #MEAction UK’s Response

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The National Institute for Health and Care Excellence (NICE) are re-writing their guidelines on ME. As part of this they issued a call for evidence relating to three topics. #MEAction UK has now submitted our full response, collecting studies, surveys and data from multiple sources.   #MEAction UK also wrote, circulated and ...
Background of papers with graphs and charts, overlayed by text reading "Take the ME call for evidence survey"

Your experience of ME/CFS services – Take the survey by #MEAction UK

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The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee.   The survey asks about advice given on ...
NICE Call for Evidence 2019

NICE Call for Evidence on ME guidelines

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The National Institute for Health and Care Excellence (NICE) have put out a call for evidence in relation to the ongoing update of their ME/CFS guidelines, due to be published in October 2020. This is an opportunity to ensure that all relevant information is held by the guideline development committee ...

NICE drag their feet on stopping the harm caused by GET and CBT

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As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines. Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive ...

UK fundraiser seeking your ME stories

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Ellie Rushton, Birmingham UK, is setting out on a rather unique fundraising adventure. For the next six months (September to February) she will be attempting to do 1000 reps of bodyweight exercises every, single, day. Ambitious indeed! But what does it have to do with ME? “I had never heard of ME ...

Why people with ME need healthy allies

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On Sunday 29th of September, my husband, David, and our daughter, Rosslyn, are taking part in the Great Scottish Run 10K to raise money for #MEAction UK. As friends of #MEAction volunteer Emma Shorter and her family, David and Rosslyn have been aware of ME for some time but they’ve only ...

Greater London Authority Unrest screenings to raise awareness of ME

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The Greater London Authority’s offices have held two Unrest screenings over the past few months to raise awareness of myalgic encephalomyelitis (ME). The screenings, held for staff, took place at Union Street and City Hall, and were part of ME Awareness Week and the #MillionsMissing campaign. Officers and staffers attended the ...
Gigi riding a mobility scooter.

Gigi Update: Lewisham Hospital Removes Gigi’s Pain Medication, Leaving Her in Rising Pain

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An update on Gigi’s situation: Gigi’s family are launching an urgent appeal to find lawyers to bring their daughter, 17, home from Children's Ward in Lewisham Hospital, London. Her family is desperate to bring her home, but the hospital has withdrawn Gigi's pain medication, leaving her in steadily rising pain ...

A petition cloaked in the respectability of research

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#MEAction UK has written a letter with regards to a survey that states it is to protect specialist CFS/ME services in the UK. We do not recommend people fill in this survey. It is written in such a way that it could be misused to support the existing treatment paradigm that ...