NICE Guideline for ME: #MEAction UK Responds to Second Draft Scope

The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic Encephalomyelitis by October 2020. #MEAction UK has issued a response to the second draft scope for the ME/CFS Guideline. 
The scope is a document which will provide the framework for the new guidelines; providing feedback about the scope is one of the best ways in which stakeholders can influence those guidelines.
Now is our opportunity to shape how NICE presents the disease to the medical community.
We are fighting hard to move away from the current false psychological framing of ME focused on harmful prescriptions of exercise and talk therapy to reflect the accurate reality of ME as a multisystem condition whose hallmark feature is post-exertional malaise, not fatigue, in response to physical and cognitive exertion. Our response urges NICE to refer to the CCC and ICC for a complete clinical picture.
Building on our initial analysis of the scope, we have addressed in much more detail the inadequacy of this document.
[maxbutton id=”17″ url=”http://meaction.net/wp-content/uploads/2015/05/NICE-Final-Comments-Form-MEAction-UK.doc-1.pdf” text=”Read #MEAction UK’s Response” ]  

Facebook
Twitter
WhatsApp
Email

3 thoughts on “NICE Guideline for ME: #MEAction UK Responds to Second Draft Scope”

  1. Lorraine Wren-Jones

    To whome it may concern.
    Firstly I would like to take this opportunity in thanking you for all your hard work and efforts concerning highlighting hidden illnesses like ME, however, I still find very little support concerning Chronic Fatigue Syndrome, and Fibromyalgia. As I suffer of CFS and Fibromyalgia, there is still very little support for people like myself, there is still a lack of information out there for people like myself, and for GP’s. I guess I have been lucky concerning the support I have had, from both my GP, and family.
    I am currently living with my sister at the moment due to a decline in my health. I am more mind altering medication than ever before, it’s not mind altering medication I need, it is the correct pain managment I need, however, right now, I’m at a loss as my GP isn’t sure what to do concerning the medication I am on.
    I accepted I am not the same person I was 2/3 years ago, that I’m learning about the new person I have become both physically, mentally, and spiritually. I’ve gone from being extremely active, hyper active, to someone who times isn’t able to get out of bed, however the determination to push myself is still there, even if it means I’m in considerable pain, I will still try and do my 30 minute exercises as I don’t want to be bed bound (that frightens me sometimes, as I’ve only just turned 50).
    I want to spread more awareness concerning the conditions I have, however, I’m not sure how ?
    Can you please help me?
    Warmest regards,
    A Fibro warrior aka,
    Lorraine Wren-Jones.

    1. Hi Lorraine,
      Be very careful with pushing yourself to exercise. This has caused a lot of damage in patients. Do you understand the difference between pacing and pushing yourself to exercise? Learn more about pacing here: https://ammes.org/pacing/
      Our “Living with ME” Facebook Group is a great place to engage with other patients: https://www.facebook.com/groups/211058135999671/
      Also, check out our patient’s page for how to get involved in advocacy and more resources for treatments: https://meaction.net/patients/

Comments are closed.

Latest News

black rectangle with white squiggles in the background. red bubbles and honeycomb in the corners. in the middle a red box that reads: #MEAction & the Mayo Clinic awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant. #MEAction logo in the bottom right hand corner

#MEAction & Mayo Clinic Projects Continue – New Grant Awarded

Given the rapidly changing landscape at the federal level, we recognize that the road ahead may bring some changes for patient advocacy. Even in this evolving environment, we’re excited to share some positive news: #MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by

Read More »

You’re Invited: The Beth Mazur Innovation Prize Fundraiser

You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST. Beth Mazur, who co-founded #MEAction was a kind and compassionate human being. She cared deeply about the ME and the Long COVID communities. She also cared deeply about innovation, new creative ways to solve problems that

Read More »
rectangle image with a purpleish marble background. In the center is a blue square with the words a very modified movement class - nov 15th-. the #MEAction logo and nourish therapeutic yoga logo at the bottom.

A Very Modified Movement Class on 11/15

Join #MEAction for our final very modified movement class of the year on Friday, November 15th at 11am PST/2pm EST/7pm GMT. This class has been crafted specifically for people with ME. This 30 minute class will be hosted virtually. We are, once again, thrilled to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga, who has

Read More »
Scroll to Top