United Kingdom News
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Global media tells the story of the #Millionsmissing
We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long haulers” expected to develop ME/CFS following a COVID-19 infection. In Pittsburgh, a mother of four told her story in the Tribune-Review about her 25-year journey of never recovering after contracting EBV, the virus that causes Mono.
Respond to the Patient Safety Commissioner role consultation
Scottish Action Alert! Use your voice to make a difference and respond to this goverment consultation.
Continuing pressure on NHS to vaccinate people with ME in light of survey results
In light of this new evidence of exacerbation of ME from Covid-19, #MEAction UK have again written to Matt Hancock and Professor Stephen Powis to make them aware of the risk to people with ME in not being able to access the Covid-19 vaccine as a priority.
Covid-19 has worsened our ME, report survey respondents
Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to gather evidence of the impact of Covid-19 on people with ME. Preliminary Report The aim of the survey is to provide data that can be used, along with personal stories, to help our campaign to make
UK ME/CFS Priority Setting Partnership launches first survey
This is an exciting opportunity to set research priorities for ME, and could be the next big step towards improvinging research funding in the UK.
Telebriefing was a success!
We were thrilled at the outcome of the #MEAction press briefing last week where we invited a panel of experts to discuss the intersection between long COVID and myalgic encephalomyelitis (ME) to the media. The panelists made it crystal clear that a subset of long haulers are meeting the criteria for ME, and that it
Investigating the impact of Covid-19 on ME – Survey
Please help #MEAction UK and #MEAction Scotland by taking part in this survey to find out the effect that Covid-19 has on people with ME. Take the survey We are working in collaboration with Action for ME to gather evidence on the impact of Covid-19 on our community. We have heard many stories from people
Graded exercise therapy is not safe for ME or Long Covid – Guardian Letters
In response to an article on Long Covid last week, the Guardian published a letter from three men – Dr Alistair Miller, Professor Paul Garner and Professor Peter White. This letter spread false information about the efficacy and safety of graded exercise therapy for ME and Long Covid. We are pleased to see that The
NHS England omits advice to apply clinical judgement re vaccine
It has come to light that a letter from NHS England and NHS Improvement to all vaccination centres and GPs in the UK has omitted advice that health professionals can and should apply their clinical judgement when placing people in group 6. Vaccination of people with underlying health conditions that put them at risk of
Waiting for Superman – UK Book Giveaway and Review
Do you want to win a free copy of Waiting for Superman? We have three copies to give away to people in the UK! To enter, all you have to do is follow #MEAction UK on Instagram, like and comment on this post. The deadline is 9am (GMT) Monday 8th March! Win a copy! Thank
Scottish Election! Ask your MSPs to support people with ME
If you live in Scotland, please join our campaign to ask your MSPs to pledge their support for people with ME. Email your MSPs The Holyrood elections are coming up on 6 May 2021 and we want to make sure that MSPs are aware of ME and the desperate need for support. There are more
UK COVID-19 Vaccine Priority and Template Letters
The JCVI make it clear that the vaccine priority list is not exhaustive and clinical judgement should be applied for people with ME.