Category: United Kingdom

#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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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  The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy.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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#MEAction Network UK: FITNET letter published in Positive Health Online

#MEAction Network UK’s statement denouncing CBT as a form of treatment for ME has been published in the January edition of Positive Health Online today. The letter was sent in response to FITNET, a controversial study that purported children and young people with ME could be successfully treated through CBT conducted over the internet. Esther

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#MEAction Network UK's polling results for the proposed MEGA study

Last week, we asked for your thoughts on the proposed MEGA study. The poll ran for 5 days and 154 of you lent your voice to the concerns raised by many. Here are the results of the vote: “The study must include severely and moderately affected patients.” 140 of 154 voted this. (90.9%) “Those researchers/advisors

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No more 'should': the aim to stop punishing myself for having ME

Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.

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Join us in the #isignedfive challenge!

Want a way to raise your voice this #MillionsMissing but don’t know how? Perhaps you’re unable to attend a protest in person, or want to do a little something extra to make a difference. The stopGET petition against graded exercise therapy trials is one of the most vital actions circulating at the moment. With a

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