1/ 📣 ME Association update on my complaint As some of you know I made an official complaint in relation to the chairman’s editorial in the ME Essential magazine. I personally felt the article was so inflammatory, so misleading especially for those newly diagnosed, and as it

Janet Dafoe Whitney Dafoe ME Association Absolutely Janet. It goes against everything the MEA stands for and basically supports GET. It’s a very unwise editorial which is why I made an official complaint to the MEA which was ignored. I was twice just pointed to his statement of ‘apology’ which didn’t really help anyone.

To everyone with ME who read the editorial by the Chairman of the MEA. As I’m elevating my complaint to the Charity Commission Charity Commission it would be very helpful to me if you could briefly state in the comments how it made you feel. What was it about the article that

The ME Association have made a public statement, now on their website, in response to our motion below. Link to their statement in next tweet.

here it is: meassociation.org.uk/2024/12/the-me…

The best thing we can do to drive change for people with ME and LongCovid is to findraise for change. Having spent time to understand the organisations, I am donating to Action for ME and ME Research UK. If you or your family can support, please do. donate.biggive.org/campaign/a0569…

Jonathan Davies, chair of ME Research UK, shares about the Big Give Christmas Challenge. Donate here - bit.ly/biggivemeresea… Read more about the Big Give - bit.ly/4hYEuYF #BigGive #Christmaschallenge #MECFS #myalgicencephalomyelitis #MEresearch

It’s Rory Stewart! Rory Stewart is one half of The Rest Is Politics podcast, which covered Long Covid earlier this year. His message: “My Christmas wish for people with Long Covid is that you are able to feel welcome, accepted and cherished over the holiday season.” #ThereForME

Really glad to see LongCovid and ME being talked about together by Layla Moran 🔶🕊️ and Andrew Gwynne MP

Grateful to Rory Stewart for his Christmas message to #pwME & #LongCovid & to #ThereForME for organising this. Reading messages throughout December from such a diverse range of allies means so much to a patient group who continue to be so misunderstood & mistreated.

Just seen the hygienist for the first time over 5 years. Being bedbound with Severe ME meant there were no options until recently which is ridiculous. I highly recommend Mobile Dental Hygienist Jo covers Derbyshire, Nottinghamshire, Leicestershire, Staffordshire, South Yorkshire…

I second that. Dr Claire Taylor is a gift to us who have #MEcfs, #LongCovid & comorbidities (which she knows how to dx & tries to treat). She deserves to win this award. We need many more like her. Thank you Dr T.

ME Association ME Association AGM #pwME #MECFS NickyProctor and I are sharing a public statement about the ME Association AGM. motionmea.wordpress.com/response-to-me… Nicky and I are pleased to see the ME Association has issued this public statement in response to our proposed motion 🧵

for the 2024 AGM. We have been in communication with Mr Riley and other trustees since submitting our motion. There have been times when emails to us have not been clear or straightforward. The next phase will necessitate the involvement of larger numbers of people with ME and

we hope the MEA makes collaborating more straightforward in future. The ME Association still has to demonstrate to us that it can make reasonable adjustments in its communications with the community it serves. Drafting this motion and engaging in discussion with representatives

of the MEA has required a lot of energy. We have asked advice from the MEA and been guided by their responses on matters regarding deadlines and the format of our motion. We appreciate the support of the ME community who have responded on social media, via email, and by phone to

our call for change. We look forward to seeing as many of you as possible at the online AGM. We are grateful for your input and understand how much energy this will have taken. Elisabeth Klaar & Nicky Proctor

Further information and background can be found at this website: motionmea.wordpress.com

And for further info - here's the ME Association statement that they posted online and on social media accounts yesterday morning. meassociation.org.uk/2024/12/the-me…

Charities are the biggest funders of medical research in the UK - we can't achieve change without funds. Please do give if you can, and share with friends and family