To: Andrew Gwynne, Under Secretary of State for Public Health and Prevention Subject: Treatment of Very Severe ME email psandrewgwynne@dhsc.gov.uk Dear Andrew Gwynne, Thank you for being an ally to people with ME (myalgic encephalomyelitis) and Long Covid and committing to ensuring publication of the DHSC ME/CFS Delivery Plan without more delay. We trust your
In the next few weeks, candidates will be knocking on doors seeking votes for the upcoming UK Election. It’s important that candidates from all parties are made aware of the challenges facing people with ME and Long Covid. It can be a little daunting to be unprepared so here are some questions you might want
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
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
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
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 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
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 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
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
