#MEAction UK response to NICE 2017 Background information UK clinical guidelines are written by a body called the National Institute for Health and Clinical Excellence (NICE). The current guidelines were last revised in 2007 and contain recommendations that people with ME consider unsuitable and potentially harmful. These guidelines also impact how ME is perceived in
10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (2007) NICE guideline CG53 Stakeholder consultation comments form – proposal for ‘no update’ Consultation on the proposal for ‘no update’ opens on: 9am Monday, 10 July 2017 Comments on proposal to be submitted: no later than 9am Monday, 24 July 2017 Organisation name
When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines for ME/CFS only recommend two main therapies for ME: Graded Exercise Therapy (GET – which asks you to gradually increase your exercise each week, ignoring any worsening symptoms) and Cognitive Behavioural Therapy (CBT). The majority of
The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy. We’ve just heard that NICE, despite being due for a revision this year, are intending not to revise the guidelines after all. This is worrying for all patients who have been harmed
On Friday, 30th October, Change For M.E. Change For Us launched their short film, The Last Great Medical Cover Up. The film details the extent of medical discrimination and neglect people living with M.E. are being subjected to every day. The 35 minute documentary features 6 individuals expressing what it’s really like to have a
Minutes just released for the 15 July 2015 meeting of the cross-charity Forward-ME group record a discussion with Dr Martin McShane of NHS England on getting him to recommend that the NICE guideline on ME/CFS should be revised. The guideline, which should be based on the best available scientific evidence, and which is followed by
To: Andrew Gwynne, Under Secretary of State for Public Health and Prevention Subject: Treatment of Very Severe ME email [email protected] 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
Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based on a recent US survey. Unfortunately, all prevalence estimates for ME are of limited accuracy. This is due to a range of factors including, but not limited to, uncertainty around diagnosis, lack of confidence among healthcare
