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#MEAction UK response to NICE 2017

#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

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NICE 2017 response

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

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Troubled by NICE guidelines? Three easy ways you can help

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

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Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines

  The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy.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

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Share this film and join the petition to reform the NICE guidelines

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

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Push to change ME/CFS NICE guideline

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

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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

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A stock photo with a close up of some papers on a table, which have multi-coloured graphs and charts on them. A hand is holding a clear pen with a blue grip to the paper.

#MEAction UK and Scotland update prevalence figures based on new data

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

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#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

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Medical education resources on ME

Medical education resources on ME Thank you for taking an interest in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  This page brings together a range of resources to help you keep up-to-date on the latest recommendations and support your patients. CPD Module and Podcast: Learn About ME This free, CPD-accredited learning module aims to support GPs and

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