United Kingdom News
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TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS
Help prioritise ME/CFS research by filling in this survey A major UK project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your responses must be in by Monday 5th July 2021. Find out more
#MEAction Discussions with REGAIN Trial Clinicians Led to Staff Training on PEM
Earlier in 2021, concerns were raised by people with ME about the REGAIN clinical trial and whether there was a risk to people suffering from post-viral symptoms, particularly post-exertional malaise. The REGAIN study aims to find out which of two treatments is better for helping people recover after being in hospital with Covid 19 –
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