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” ]
#MEAction Georgia: Voice of the Patient in Coordination with CDC & Emory School on Nursing
January 8, 2025
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Back in September, #MEAction Georgia State Chapter partnered with the Centers for Disease Control and Prevention (CDC) and Emory School of Nursing to host, Voice of the Patient: A Panel Discussion with #MEAction Georgia. This event was a continuation of #MEAction Georgia’s #MillionsMissing 2024: #TeachMETreatME programming. Erin Lee and Liz Burlingame of the #MEAction Georgia
3 thoughts on “NICE Guideline for ME: #MEAction UK Responds to Second Draft Scope”
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.
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/
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