Maria-louise Williams

@hopefullizzy 🫂💕

I burst into tears all the time at the moment because of sheer exhaustion. Each day I struggle stubbornly through to as near the end of my feed as I can possibly manage. I just feel so horribly unwell😔 in some moments more so than when I was in hospital. Sorry for the moan!

@NeurologistMom 🫂💕

My angel, with all the pain you carry, I admire your resilience, your wisdom, and your faith in me and your dad♥️ Even in agony, you stood yesterday for a minute before nearly fainting, just to feel normality. You are my hero. I’ll do all I can to help find a cure. I promise.

@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 🧠.💙🫂

A Moment of Silence for Severe ME/CFS Patients Today we honor the sickest among us.  The ones who have been least lucky among some of the least lucky people on earth.  It is only bad luck that lands us with ME/CFS, none of us did anything to deserve this or to cause this.  And no one with severe ME/CFS did anything to wind up sicker than anyone else. ♿ 𝘈𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘪𝘭𝘪𝘵𝘺: 𝘓𝘪𝘴𝘵𝘦𝘯 𝘵𝘰 𝘵𝘩𝘪𝘴 𝘱𝘪𝘦𝘤𝘦 𝘳𝘦𝘢𝘥 𝘢𝘭𝘰𝘶𝘥: whitneydafoe.com/mecfs/audio/25… The person most dear to me in this world has gone from moderate to extremely severe this spring and I weep for her everyday.  Because I know exactly what she is going through - it is absolute hell on earth - and I am completely helpless to help her or stop it.  All I can do is be here for her so she is not alone. People living with severe ME/CFS lose every single thing that defines being human - every single one - and experience symptoms that no human should have to endure.  Unworldly symptoms that you could not imagine in your worst nightmare - until you experience it.  Dehumanizing, incapacitating, uncontrollable, reality bending.  It is torture for every single second of existence worse than anything most humans on earth will ever experience. And these symptoms are layered with a lack of acknowledgement from the world that leaves these patients in the shadows of society as if they do not even exist anymore.  Or worse, lost on their own, abandoned and destined to die alone on the streets.  See my post "The True Horror of ME/CFS" where I walk you through the logical, factual steps that lead you to the hidden reality of what many severe ME/CFS patients face - dying alone on the streets. whitneydafoe.com/mecfs/?post=th… Think about that combination.  Living in a world worse than Hell, and being completely abandoned by society with no help and a feeling of no hope to ever get better, nothing to look forward to but endless agony and rejection and loss.  Because when you are in that pit of severe ME/CFS, you have no contact with anyone or any way to know about research progress or anything hopeful.  You are isolated and alone with nothing but your mind and punishing, relentless, never ending suffering. When you think about this, it is not a surprise that so many severe ME/CFS patients take their own lives.  But it is absolutely, unconscionably tragic and must end with real care, real treatments, and real, tangible hope. Anyone reading this is better off than those who are most severe and we should all share the horrifying reality of our lives - whatever stage of ME/CFS we live with - through writing and photographs and anything else that makes sense to us.  And hope that someday someone listens.  But until the world turns an ear, an eye or hell, I’ll take a fucking toe, all we can do today is have compassion;  Offer our prayers and hopes and wishes.  And take a deep bow of respect to those clinging onto this life desperately, in absolute agony emotionally, physically and spiritually. Today let’s take a moment of silence to honor severe ME/CFS patients.  Really.  Let’s all take a moment - even just 1 minute - right now and just hold still in silence with our eyes closed like many severe ME/CFS patients live all day everyday - and think of them.  You might not think this makes a difference, but it does, and I am asking you - all of you - please - take a moment for the least lucky amongst us. To all those living in silence and darkness.  Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss. We are here, we are praying for you and we understand.  And we are not going away.  We are right there beside you.  We are all in this together and stand united until the backs of society are turned towards us and the light of science and care and awareness finally shines. Love, Whitney 💙 #MECFS #MECFSAwarenessDay #SevereMECFSAwarenessDay #pwME

@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

@Mariararoo I was just thinking about you this week Maria but my brain wouldn’t give my your tag to ask how you were doing. I’m glad you’ve been able to stabilise your weight now 🫂 x

Please can #pwME #EDS and/or #POTS tell me their experiences of NJ tubes, particularly if they were useful to you. I’m in hospital and being told of the risks, that supposedly people don’t come back off them once they’re on them, that it doesn’t improve things, etc etc so I

@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

Thank you to everyone who has helped, supported and advised me and my family. They inserted an NG tube yesterday to check tolerance, then once more stable will insert a PEG if I can tolerate using my stomach, and if not try NJ or PEJ. Absolutely exhausted but a lot more settled

@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.💕

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

@Mariararoo Thank you Maria this is really helpful. It’s so hard to keep fighting for what we need isn’t it? I really appreciate your energy. Sending love xx

@VladVexler 🫂💜

Wow worst suffocating chest clamp of entire period, both hosp & home time. Threw all at it - 10L oxygen, nebivolol, slow sodium, electrolytes, aspirin, cold press, nitric oxide, next step ambulance - but too ill to go to hospital & GTN spray doesn’t work for me. #pwME #LongCovid

@thephysicsgirl 🫂💕

Two days ago, my dad William “Bill” Cowern passed away somewhat unexpectedly. I flew last minute to Hawaii to be with him and my family for his last days. I feel incredibly lucky to be healthy enough I could finally see him after years of missing him. My dad was joking, and swearing, and crying until his last moments. You asked how he was doing and he replied with a smile, “I’m dyin’ here!” His humor and warmth were a gift he gave until the very end. Some of you might know my dad from my videos talking about getting hit by lightning (twice!) or interrupting our filming to ask me why his PDF was printing small. (Holiday time was always dad tech support time.) But I knew him as a 6’3 gentle giant. He gave the biggest bear hugs as he welcomed anyone and everyone into his home, and into his life. He was curious about people and the universe. He’s the reason I love science, math, qnd scifi. He’s the reason I’m curious about the world. He was a Vietnam war helicopter pilot in the Marines. But much of the island of Kauai (where I grew up) knew him as “The Tree Man.” He was a tree farmer, and true tree lover his whole life. He could talk to you endlessly, and humorously slowly, about trees, vitamin D, Larry Bird, or one of his many other obsessions. He just loved to share. He shared his knowledge, his kindness, his stories, and his warm love with everyone. I will miss him every day. He was the reason I went into science communication. I hope even half of his warmth and greatness lives on through me, my 4 wonderful siblings, and my amazing mom. I love you forever, Dad. 🖤💔🖤

@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 .🫂💕

@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

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

Hellish day of profound toxicity and brainstem breathing and swallowing problems triggered by stress heart MRI yesterday. Also for first time in life, delirium during night. It’s proving a complex jigsaw puzzle to solve!

@JasonS1269 🫂💙

Sorry all. I am in need of help again for my ongoing 'drama'. Care home has taken my supplements away from me saying they could be the reason I feel so ill. They'll let GP decide who knows nothing about LC. This is after showing them Dr Taylor's letter on POTS etc. Any advice?

@JasonS1269 💙🫂

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!! 🌟💙

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

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.

@VladVexler 🫂💙

Taken by ambulance again with worst ever heart chest ME crisis. As I struggle to breathe and the episodes get worse, there are no solutions from NHS or private hospitals. Feeling deeply this nightmare that millions of people with ME and Long Covid face. #pwME

@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