ABOUT #MEACTION UK
Our movement fights for recognition, education, and research so that one day all people with ME (myalgic encephalomyelitis) will have access to rapid diagnosis, and compassionate, effective care. As people with ME, carers and allies ourselves, we campaign on the issues that are most pressing.
In Scotland, health is a devolved issue for the Scottish Parliament and covered by #MEAction Scotland.
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We are always looking for volunteers with ME and healthy allies to join our team. If you are interested in helping or getting involved click on the photo to contact us today.
Check out our guide to meeting your Member of Parliament (MP). Click the photo to find tips, suggestions, asks and sample language to meet your MP. It will give you the basic tools to help you to feel comfortable meeting with your MP.
After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”
#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.
NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine