Alice is home. And as relieved as we are. It was an appalling, inhumane experience. @RCHTWeCare Drs disregard the specialist because he is private, even tho he’s been working 40yrs. So what now? Alice is left to die at home? #pwME #VerySevereME #MECFS

Staying in nhs hospital soon for surgery, any ideas as someone with #SevereME for sign on my door? Eg I’m sound and light sensitive and don’t come into my room before 12 etc. FYI Specialist nurse has read #MECFS NICE guidelines and put notes on system. Mum will be with me. #pwME

A message from my Mum and also news that donations are going to be matched on the 29th and 30th April (up to £5000): https://t.co/mdhn9LIfR7

We have reached the goal of £3.5K for @MEResearchUK !!!! However, please still continue to share if you can!! @MEResearchUK deserves all the money we can raise to help us ME Patients!! 🌟💙

This is not just for Alice but all #pwME 💙 (2) #biomedicalresearch #pwME #severeME #ThereForME #MyalgicEncephalomyelitis #GoFundMe https://t.co/KW9ml769DK

Alice turns 21 on 11th May, her 10th bedridden birthday with #VerySevereME Two amazing people are running 21km for 21days (only 5 runs left!) to raise £3.5k for @MEResearchUK & show Alice how much she means to them. They're £40 short! Please read, share & support! Link below! (1)

Dear @wesstreeting and @AshleyDalton_MP Please #FundThePlan I’ve lost my teenage years to ME and I don’t want to lose my twenties too. #ThereForME

Dear @wesstreeting & @AshleyDalton_MP My 20yr old daughter @FrickerAlice has been bedridden for 9yrs with Very Severe ME. She hasn’t lived a life since she was 12yrs old. Please #FundThePlan @ThereForME_UK @JayneKirkham4 #SevereME #pwME

https://t.co/KxxsGWVm21 These Red Tree Warriors, Mum has done a good job ♥️ We hope you enjoy and take a read - Caroline

Our Friend James is running the Manchester Marathon to raise awareness & support for Alice & all #pwME He's even announced he will be shaving his head to boost the fundraising pot! If you can, please share & donate.💙#verysevereME #severeME @MEResearchUK https://t.co/jJnbvNraam

Please click on the image for the full poem. Bit of a raw one, but I know many will relate. I wrote it for/of my mum really. #MECFS #poetry #chronicillness

When I was doing my residency decades ago, there were some very severe patients with complex neurological symptoms that no one could figure out. They were given five rounds of plasmapheresis followed by five rounds of IVIG treatment. In most cases, this approach actually helped,

I have emailed this complaint to @MEAssociation 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.

Kirsty Young on radio 4 just now hosting Miranda this week. She believes she'll have "full energy in a year" by "saying no to things". This is trite and frankly irresponsible to use a huge platform to spout platitudes around #ME when right now several patients are facing death.

URGENT #SaveCarlasLife: West Middlesex Hospital has now sectioned her under the Mental Health Act #MEcfs #ThereForME It is being challenged. Please read the below, watch the videos from Pierre in the article, and consider what I've said. Share widely: https://t.co/j89bcACilU

This isn’t a bad piece, and I salute the courage of those who allowed their stories to be told. But headlines matter, given that many people never read beyond them. #ME has nothing whatsoever to do with tiredness. It’s pain and suffering on a scale that most cannot comprehend.

Maeve died in 2021 after suffering from ME for a decade, a coroner looking into her death has called on the NHS to drastically improve the care for ME patients. Her mother Sarah Boothby tells @skysarahjane, Maeve was "a dream daughter." https://t.co/PAiZ4D1jU3 📺 Sky 501

Exactly this 👇🏻 There has been more than enough misrepresentation of ME in the media and psychobabble about self cure through positive thinking/increasing activity. This is not helping to change the narrative #ThereforME

#MaeveInquest witnesses - please stop calling ME “chronic fatigue syndrome”. The total lack of respect for Maeve, her family and all of us. #MyalgicEncephalomyelitis - learn how to pronounce it or just say ME 🤦‍♀️

Does anyone experience this? Especially in their tongue and cheeks? Alice has always experienced what she explains has very bad restlessness even before ME, however the past 9yrs it's got a lot worse!Especially recently! Would this even be something like restless legs? 2/2