In 2022 ME Research UK was fortunate to win a £1000 donation from The Benefact Group thanks to nominations from supporters. We now have the chance to receive a further donation but need people to #nominateACharity - bit.ly/416FWPz - our charity number - SC036942 #pwME

Something people don’t tell you about chronic illness is the toll it takes on you to go through these constant ups and downs. The hope you feel when things are better and the despair when things are getting worse again. That you can never rely on stability.

Severe/ very severe ME is your life, hopes and dreams being over but still being alive enough to experience the ongoing loss. It's to watch from the sidelines not knowing whether you'll ever be part of the game again. #MEAwarenessHour #pwME

Life is a seemingly never ending cycle of hospital appointments, scans/tests, nurse visits and symptom flare-ups at the moment. Very little joy or fun to be had right now. Not how I imagined I’d be spending my thirties but here we are… #PwME #MECFS #NEISVoid

I couldn't agree more that health is a human right. Millions of people around the world with #MECFS have been neglected and abused by health professionals for decades. Research and treatments are desperately needed please Tedros Adhanom Ghebreyesus #MedTwitter #WorldHealthDay #HealthForAll

It’s #WorldHealthDay2023 and the theme this year is #HealthForAll. Understanding the causes of ME/CFS can bring us one step closer to this goal. Help us get there by joining the #DecodeME study today: rb.gy/ws98 #MECFS #PwME

Missing this little bunny today, my first Easter holiday without her. I’m sure she’d be devouring a carrot based snack if she was here! 🐰🥕

Chapter Five of the Chronic Illness Survey Adventure is coming soon! Remaining Section 4 issues? Check your email; I should have replied to everyone as of this evening. Haven't begun? It's not too late to join in, but consider this your last call... meaction.net/epi

Happy Easter to those who celebrate. Hope you can enjoy the small joys this weekend if you are too unwell for the bigger moments #JoyInSpring

I just unlocked Amaterasu's Necklace in the Chronic Illness Survey Adventure! Can you help us achieve balance by sharing this message? We need to be sure we get enough people with #MECFS, #POTS, #MCAS, #hEDS, #LongCOVID, & healthy controls. meaction.net/necklace

I spent a couple of hours in the garden over the Easter weekend (sat down to plant some bulbs in a pot) and even that triggered a couple of days of #PEM Hours of activity = days of payback #MEAwarenessHour #PwME #MECFS #NEISVoid

A reminder that #MEAwarenessHour is currently taking place. Same time every Wednesday ~ 8-9pm BST. Join in worldwide by adding the hashtag to your tweets and help raise ME awareness. #pwME Poster credit Lisa_Cat

The DecodeME the ME/CFS Study reported last week that the first batch of DNA samples have been sent for analysis. If you haven't taken part yet, and are: based in the UK have a diagnosis of #MECFS and aged 16+ then there is still time. #MEAwarenessHour decodeme.org.uk/portal/

#dysautonomia so often ignored in a #ME #MEcfs diagnosis. I wish I’d known about it years ago. I would have avoided so much worry and self-doubt. I was a sitting target for the snake oil vendors.

Please sign to ask for masks in healthcare settings. Health equity or health supremacy? What is it to be? #MyalgicEncephalomyelitis #LongCovid #pwME #pwLC #CovidIsNotOver petition.parliament.uk/petitions/6363…

Please vote for Invest in ME Research to share in £40,000 at MyGivingCircle: mygivingcircle.org/invest-in-me-r…

Hello Sajid Javid 👏👏Sean O'Neill and millions of us have been waiting for 11 long months to see what might be implemented. Can we have an update as more of us now have an #ME diagnosis due to #LongCovid ? You’re right, it has not been taken seriously enough. Let that end now.

20,000 #pwME have completed the #DecodeME questionnaire, providing us with a wealth of information about lived experience of #ME/CFS to understand more about the illness. We still need more participants! You can still take part: shorturl.at/tyESV

Today is #NationalDNADay Genetic studies have transformed our understanding of many diseases. By studying your DNA, we aim to identify the genetic differences in those with #MECFS. Join #DecodeME today shorturl.at/kmnK7 #PwME #DNA #GWAS #Genetics

We’ve reached 10,000 DNA participants! We still need more so please help us spread the word about #DecodeME to #PwME Take part here if you haven’t already: rb.gy/hc04i #MECFS