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#MEAction UK’s letter to The Telegraph, Feb 2024
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
#MEAction UK’s letter to the BBC over the show Dragons’ Den
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
#MEAction UK’s Response to DHSC (My full reality: the interim delivery plan on ME/CFS)
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) Introduction This response is submitted on behalf of #MEAction UK, a not for profit organisation operating in all regions of the
JNNP to publish edited rapid response by MEAction UK.
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
#MEAction UK interim update on JNNP complaint.
#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
DHSC interim delivery plan on ME/CFS
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
MEAction UK challenges removal of rapid response from JNNP website.
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
MEAction UK submits a rapid response to the JNNP in support of NICE.
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
MEAction UK’s response to the Guardian article 11 July 2023
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
#MillionsMissing 2023: Scotland calls for healthcare education
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
#MEAction Scotland’s plans for #MillionsMissing
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
Join the UK and Scotland’s digital campaign this #MillionsMissing
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