It’s time to send out our SOS signal if we want to have funded research.

This global #MEAction initiative aims to raise awareness among medical professionals of the challenges faced by ME/CFS and emphasise the need for healthcare education about this condition.

To: Andrew Gwynne, Under Secretary of State for Public Health and Prevention Subject: Treatment of Very Severe ME  Email:...

The annual report covering what #MEAction UK has done in the year 10/2022-10/2023.

We tallied up some numbers from our #TeachME, TreatME campaign to educate clinicians and medical students about ME, and the results are fantastic!

With the upcoming UK election, It’s important that candidates are made aware of the challenges facing people with ME and Long COVID.

As a charity we were pleased to be able to submit a longer response than is possible using the online survey. Below is the text as submitted to the DHSC. (PDF Version available here)IntroductionThis response is submitted on behalf of #MEAction UK, a not for profit organisation operating in all regions of the UK. We thank the DHSC staff past and present who supported the Delivery Plan and the volunteers on the working groups who put so much effort into this report. We give mor

Halfway through summer, we have so much to report about our immense, day-to-day work advocating for M.E., for you, and for each other. On the medical front, our ongoing, grant-funded project with Mayo Clinic Rochester continues to transform medical education at Mayo. Together, we have updated the ME/CFS homepage, written a Concise Clinical Review article that will debut in Mayo Clinic Proceedings with an attendant CME, and created a new diagnostic and treatment algorithm on A

My full reality: the interim delivery plan on ME/CFS is a great opportunity for the ME community to make our voices heard. Reading the interim plan and completing the survey is a big committment for #pwME so we have put together a document with advice on how to save your answers, a list of FAQs from the DHSC and a preview of the survey questions. • Easy Read version • Saving • Community call slides • Challenging the introduction • FAQs from DHSC • Question previewEasy read ve

MEAction UK has sent the following letter to the BMJ Editor in Chief, the JNNP Editor in Chief the and the JNNP Editorial Office Team to request more information following the removal of our rapid response to the paper published in the JNNP this month.We are disappointed that the JNNP decided to remove our Rapid Response to, “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis”.1  

MEAction UK is preparing a detailed response to the latest published paper attacking the NICE Guideline on ME/CFS. In the meantime this is the response sent to The Guardian in reply to their article covering the publication.MEAction UK was shocked to read the article ‘ME/CFS guidance that discourages exercise is flawed, say researchers’ published on 11th July 2023.The article covers an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focussed on

This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland.Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community to join our digital campaign. The campaign asked people to share photos based on two ideas – their view of living with ME or the spa

This year, #MEAction Scotland will be doing smaller, more focused activities for #MillionsMissing than previous years, and we are asking the community to take part in the digital campaign, rather than joining us in person. We also need people to email their MSPs, which there is information about below.Volunteers are planning two main activities during ME Awareness Week in May.Parliamentary event for MSPs - 9th MayFollowing the successful debate in the Scottish Parliament in F

May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and #MEAction UK are returning to the central theme of #MillionsMissing - drawing attention to the people missing from their previous lives and wider society because of ME.Most people don’t understand how widespread ME is, or that so many in our community have been ill for decades. We want to flood social media with powerful images that show the reality of life with M

Caroline Kingdon's new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as well as Charles Shepherd of the ME Association and Luis Nacul of the London School of Tropical Medicine. As members of the NICE guideline development committee, the authors wrote this paper with GPs and primary care practitioners in mind. It explains the key messages of the guideline, including the need for better and earlier diagnosis, better treatment and the n

New York Magazine’s Intelligencer published an fallacious article last week about Long COVID and ME/CFS in which the author, Jeff Wise, paternalistically argues that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) can successfully treat patients if only the ME and Long COVID communities were open to this possibility. Wise fails to acknowledge the long history of patients willingly undergoing these treatments at the guidance of their doctor, and the subseq

Taking BOLD ACTION with our press outreach has led to national media writing about ME.

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue.

Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are entering we have postponed #MillionsMissing London that was due to take place on September 13th in Parliament Square.We received official notification today, see below:‘You will be aware that the country has entered an official period of mourning following the death of HM Queen Elizabeth II. As a mark of respect, the Greater London Authority, (GLA), has taken the decision to can

We are asking all our supporters, people with ME and people with other complex chronic conditions to lobby the Wellcome Trust, the biggest funder of medical research in the UK, to commit significant funding to ME.  ME has been neglected, ignored and stigmatised for far too long and, as a result, hundreds of millions of pounds have been missing from ME  biomedical research and this has to change.Virtual ActionsStep 1: Take a picture of yourself holding a red threadHere are the