Maria-louise Williams

Severe M.E warrior (One of the missing millions).
Crohn's disease in remission.

[Maria-louise Williams @Mariararoo]

@hopefullizzy 🫂💕

[Maria-louise Williams @Mariararoo]

@NeurologistMom 🫂💕

[Maria-louise Williams @Mariararoo]

@DafoeWhitney Incredible post @DafoeWhitney Thank you so much for using your precious energy to raise awareness and be a voice for all of us .💙 Hope that makes sense,couldn't find the words !😫 Very severe M.E 🧠.💙🫂

[Maria-louise Williams @Mariararoo]

@Naomi_D_Harvey Aww thank you 💕 .I'm not able to come on here much as it uses so much cognitive energy. You are all in my thoughts. I will try & do an update soon .I'm very severe think I'm in a permanent crashed state most of the time .Hope you are as ok as you can be.xx

[Maria-louise Williams @Mariararoo]

@hopefullizzy Hopefully, they will adjust the feed rate , volume & type of feed to what your stomach can tolorate if you appear to be not tolerating it . I have Nutrison multifibre soy feed as i couldn’t tolerate the standard feed. Hope that makes sense. Sending love xx

[Maria-louise Williams @Mariararoo]

@hopefullizzy Oh, that's so good to hear.I hope you tolerate the NG feeding.I didn't realise until i got home with mine that you can pause or stop the machine if you feel sick & full as in hospital they wouldn't even pause it whilst i was vomiting .Their main aim was to complete the feed.💕

[Maria-louise Williams @Mariararoo]

@hopefullizzy You're very welcome .Yes, it's a battle .I hope they listen to you .Stay strong. Sending love & positive vibes 🫂💕xx

[Maria-louise Williams @Mariararoo]

@VladVexler 🫂💜

[Maria-louise Williams @Mariararoo]

@thephysicsgirl 🫂💕

[Maria-louise Williams @Mariararoo]

@hopefullizzy I am able to eat & drink small amounts .I had to battle to come home with an NG .Hope that all makes sense .Its so hard to type. Stay strong and remember its your body .There's so much more i could tell you if only my brain would cooperate.take care thinking of you .🫂💕

[Maria-louise Williams @Mariararoo]

@hopefullizzy I,ve had an NG for 15 mths ,I was told by the hospital that its not possible to have an NG at home.A nurse comes & replaces it every few months .I am rarely sick now my weight is stable. Consultant wants me to have a peg but I'd rather not until i absolutely have too

[Maria-louise Williams @Mariararoo]

@VladVexler So sorry you are going through this Vlad.Thinking of you & sending hugs & stay strong vibes .🫂💙

[Maria-louise Williams @Mariararoo]

@JasonS1269 🫂💙

[Maria-louise Williams @Mariararoo]

@JasonS1269 💙🫂

[Alice Fricker💘 @FrickerAlice]

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!! 🌟💙

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

Would any journalists be interested in investigating the allegation of a secret or semi-formal agreement between the Royal Colleges of Medicine and the General Medical Council to not accept complaints from patients with ME or about ME-related medical neglect? 1/2 #MECFS

[Christoph Ströck @cstroeckw]

The handling of ME/CFS is clearly one of—if not the—biggest systemic failures in modern medicine. I’m convinced that nothing else even comes close, at least not in the Western world. In no other case is there not only such profound neglect, but also so much active harm inflicted.

[Maria-louise Williams @Mariararoo]

@VladVexler 🫂💙

[Maria-louise Williams @Mariararoo]

@DafoeWhitney 🫂💙

[Whitney Dafoe @DafoeWhitney]

I can't lay here. i can't sit still. I can't work on anything. They all just make me want to scream. But there's no way out. No door that I can walk through. No path through the wide world beyond that will carry me. Nothing to do but silently scream. #MECFS #LongCovid