Below you will find links to the new
draft and the actual NICE guidelines for ME/CFS. These are taken from their respective websites (as defined in their titles) and are their own copyright.
Initially, I set this page up based on the draft guidelines and then decided to wait until April 2021, which is when the draft will become official.
FYI: Disappointingly, these guidelines were postponed and then after much ado about not a lot they were finally release 29.10.2021.
Initially, I was going to dissect the draft guidelines but I will make a start only when they become official.
Bookmark this page and keep checking for updates (below will begin to be updated very soon).
NICE actual guidelines for ME/CFS … (published 29.10.2021)
Can you imagine,
every single day of your life,
feeling like this quote by a leading specialist in AIDS & ME/CFS?
“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” ~ Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University.
And I am so sorry to write this, but sadly, it is the reality that myself and millions of others live. Feeling like we are dying every single day of our lives and wondering how on earth we are still alive the next day. This illness is like a living death.
The National Institute of Health and Care Excellence (NICE) estimates the prevalence of CFS / ME to be ‘at least’ 0.2% to 0.4% of the UK population, implying up to 1 in 250 people affected, or 260,000 in total.
The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. A recent UK biobank study places that estimate at 30 million. In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States.