NEWS

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.

In  Judith Woods' Comment piece on 2nd February 2024, ‘28-year-old Lauren Hoeve died by euthanasia - to a degree, I understand her pain’ she boldly asserts that a great deal of Lauren’s anguish was ‘psychological’.  The writer then belittles the immense pain suffered by people with severe ME, as Lauren did from 2019, as she does not believe that their suffering is ‘unbearable’.If Ms Woods had done even the most cursory research she would have found the updated NICE guideline

We are writing to express our deep concerns about a segment featured on an episode of Dragons' Den, which aired on BBC1 on Jan 18th 2024. The episode in question showcased a product “Acu Seeds” that had a back story where the entrepreneur said she “believed they had aided in her recovery of ME/CFS”. This is a complex condition with significant impact on those who suffer from it, and currently no treatment or cure is recognised by the NICE Guideline on ME/CFS (NG206) [1]. Whil

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

MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology, Neurosurgery & Psychiatry (JNNP) are publishing an edited version of 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’. We have taken out some of the more direct language but left the sense and the sentiment intact. We agreed to a few selected

#MEAction UK has now received a reply to our complaint about the removal of our rapid response from the Journal of Neurology, Neurosurgery & Psychiatry (JNNP). ‘Thank you for your email. I can confirm that your complaint has been received and is currently under review by the Content Integrity team at BMJ. We will endeavour to respond to you in full as soon as possible.’ In order to understand who/what might have been behind the re-evaluation and removal of our rapid response

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  

Below is the text of MEAction UK's rapid response submitted to the JNNP article that was published 10th July 2023.In the article ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’ published in the Journal of Neurology, Neurosurgery & Psychiatry on 10th July 2023, the authors claim NICE invented a new definition of ME. These claims are unfounded as NICE used the Institute of Medi

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

Experts at the #MEAction briefing linked long COVID to myalgic encephalomyelitis (ME) and urged NIH to research both conditions together.

A new education module designed to teach healthcare professionals about ME has been released. Send the new module to your GP, using our email template.

After the recent RCGP Annual Primary Care Conference & Exhibition held in Glasgow, it seems appropriate to reflect on the impact of the conference on educating GPs about ME/CFS.