I want to start this post by saying a huge, huge, heartfelt thank you to everyone who emailed, dm’d, and commented about this topic. You spoke to us about your experiences, the lessons you learned, your anger at the proposals and your fear for your own futures and the futures of other patients should these proposed guidelines come into effect.

We heard you.

Below is our submission to NICE. Much as we wanted to pour all of your – all of our – anger out, to be heard and felt by the panel, NICE specified how we were to feed back to them. So at times this document may feel dry, but scroll down towards the end and you’ll find some longer responses we felt just couldn’t be left out, largely taken from our blog which so many of you echoed.

The fight is not over. While we wait to hear about the outcomes from this consultation, another consultation is going to open in November that will also impact our community: assessment and treatment of ME/CFS. Once they release the papers we will, of course, be trawling through them and bringing you all the info and opportunities to have your say just like we did for this consultation. Watch out for that on our blog, in our newsletter and on our social media.

In the meantime, thank you again. I hope our submission does justice to your thoughts, feedback, ideas, fears and more.

Ellie, Chronically Awesome Founder and CEO.