🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Elisabeth Klaar | Oak Tree Studio NickyProctor Your words are skilfully chosen. Any of us actively involved with public service know it’s a BIG ask of anyone to become a Trustee. To chair a board of trustees is even bigger. I hope someone is interested enough to volunteer. It’s a magnificent opportunity.

An extraordinarily ill-advised and offensive editorial by the Chairman of ME Association. It's beyond disappointing that one of the leading ME charities thinks it's appropriate to publish such condescending, unnecessary and potentially harmful advice. Support withdrawn.

Does anyone here take midodrine, and what improvements have you seen on it? I have just been prescribed it. My doctor said it was basic first line of action and that I will be able to stand 🥺 #LongCovid #MEcfs

Carole Bruce Katy B ... @nickyproctor and I propose in our motion to the forthcoming AGM. See here for thread of info and background: x.com/lammas_leaves/…

I have emailed this complaint to ME Association detailing why I find the article their chairman wrote so appalling. I agree with what seems to be the majority of #pwME that an apology and retraction isn’t enough and that Neil Riley should resign.

We are sad to announce that #ThereForME has suspended our collaboration with the ME Association. We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed. More here 👇 (alt text below)

I still have PEM. The reasons I didn't share THAT article all came true last night. It is devisive and causing our community to argue amongst themselves. Too much for me to deal with so I have removed all related posts. The article has been shared by many other #pwME I'm out.

I'm in tears right now. Reading through this list of names and the little snippets of peoples lives affected. Sending spoons, love, kindness and solidarity to all 650+ of you See the list of signatories: docs.google.com/document/d/10J… to If you want to sign: docs.google.com/forms/d/1vwFiH…

Turning commenting off is a great way to silence a population of chronically ill and disabled people who already struggled to have a voice. Not a good look for a charity that is supposed to support us. #pwME

I need to vent. If I don’t let it out to those who understand, I feel I’ll explode. 👇👇👇 #ME #MyalgicEncephalomyelitis #ChronicIllness #ItIsNotChronicFatigue #NEISvoid

NEWS! We've some very positive news to share. The HSE have formed a working group for #LongCovid. LCAI reps will be part of this group. 'The working group will examine and make recommendations on the strategy, design, planning and management of Long Covid services in #Ireland'

Carole Bruce postersandme The ME Association became a Mental Health charity when it adopted CFS. Poor mental health is extremely common (25% of 70m UK at any one time). Of COURSE people improve/recover from mild mental health conditions (comprising no more than mild phobias). #DecontaminateTheMEDataSet

Inspired by Lizzy H, I have written my 1st ever Haiku. ‘Please can you help me?’ Doctor replies ‘You look fine’ Struggles continue

I have an account on blue sky. @[email protected] I hate to lose my contacts with 16,000 followers on Twitter so I don’t really know how to manage this. I only use it for MECFS. Trying to support people.

🕸️Dr.T, PhD Please remember the keto diet causes huge metabolic demand. In #SevereME this has resulted in symptom exacerbation such that tube feeding is critical to survival. For them, getting out of permanent crash state takes decades. Repeated recommendation of this approach is high risk.

sarah 🕸️Dr.T, PhD Thanks for saying this! Keto diet after Sarah Myhill for 2 months caused me a big crash and a permanent decline. 1.5 years later I cannot return to my pre Keto state. Never again!

Dan Wyke 🦠➡️🧠🔥 30 years between my diagnosis & that of my young daughter’s. No difference in what’s available to help (apart from the emphasis on absence management by schools has become so very much worse!). The lack of progress is utterly soul destroying.

I am migrating. This algorithm makes respectful conversation unlikely. X profile will remain. It has helped some orientate to how #ME is a disease. Badly managed #MEKills. NHS has yet to manage it since #CFS. The inquest evidence is all on record. Devon County Council is withholding it.

#PEM is NOT the same as fatigue or exercise intolerance. It’s different. It is hard to understand if you don’t live with it yourself…. ….or if you’ve been misdiagnosed (not your fault) and are conflating these. PEM is unique to ME.

By the time you & I woke up today, Heather had already had her Christmas breakfast & been making good use of her Christmas present 😊. Thinking of you all today and sending love from me and Heather. Thank you for being here 🍂💙🍂 #pwME #AloneTogether