Welcome to the November Newsletter!
We welcome the new NICE Guideline for ME/CFS
Dr Charles Shepherd, our Hon Medical Adviser, writes:
“The ME Association is delighted that the new NICE guideline has been published (29th October 2021) and we fully support all the new recommendations.
It has been widely welcomed by the patient community. It’s important to note that the new recommendations are also supported by BACME – the organisation for health professionals who work in the hospital-based referral services. For almost 15 years, people with ME/CFS have had to live with a NICE guideline that was unfit for purpose – because it recommended treatments that were either ineffective or harmful.
After a very thorough review of all the evidence – from clinical trials, experts and patients – we now have a guideline that has reversed these recommendations.
The new guideline is of landmark importance because it
- Recognises that ME is serious and complex medical disease
- Emphasises the need for early and accurate diagnosis – preferably within 3 months of the onset of symptoms, which normally follow an acute viral infection, and where there are important overlaps with Long Covid
- Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET
- Recognises the special problems faced by children and those with severe ME
The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full UK network of hospital-based referral services where GPs can refer people for further help
Media coverage has been extensive and supportive – apart from comments from some of the Royal Colleges, some of whom are still not happy with the final version!
A collection of articles and news items on the subject can be found on the MEA NICE guideline website page.”
Our Big Give Christmas Challenge
Our annual Christmas Appeal launches on Tuesday, 30th November. This year we are once again using the full force of the Big Give Christmas Challenge to raise lots of money for our Ramsay Research Fund.
The Big Give is the heavyweight champion of the UK when it comes to delivering real punch for donors who want to ‘Double Their Donations’.
We already have £20,000 waiting to be doubled up in the matched funding pot – made up from £12,500 pledged by the MEA’s own supporters and £7,500 from The Reed Foundation, one of the corporate sponsors of the Christmas Challenge.
The Challenge is being held entirely online from midday on Tuesday, 30th November until midday on Tuesday, 7th December. We’d love to end up with at least £50,000 by the close of the appeal. It can be done!
Supporters who pledged that total of £12,500 for matched funding [including Vegepa Club] should hang on to their money until our fundraising manager Tony Britton asks them to redeem their pledges immediately AFTER the online appeal has closed.
To donate to our Christmas appeal, please visit here
Thank you for your continued support.
With kind regards