MEsufferer

Suffering with ME/CFS for 2 years

[MEsufferer @ME_sufferer]

@renamemecfs What dose are you on? I'm on it as well so keen to know more 💙

[Ror Preston @RorPreston]

ME/CFS shows the highest impact on family members’ and partners' quality of life among conditions so far studied using the FROM-16 questionnaire

[ME/CFS Science @mecfsskeptic]

1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening."

She gives examples of patients who do not get appropriate care.

[Marco @Gmwetz]

Hi @bryan_johnson ,
For people with severe ME - a chronic disabling neuro immune condition- this is how their daily life looks like. Bound to a bed, unable to tolerate stimuli, unable to get the body to move. It’s devastating. No approved treatments. No cure.

Imagine you have to do this for 24/7 - for months and years. Unimaginable, I know.

If you want to support research to support kids and adults - please raise awareness about this condition and maybe consider donating to @OpenMedF or @weandmecfs

Thank you 🙏

[MEsufferer @ME_sufferer]

@AutonomicBrad Wow, you're a real bundle of fun

[James Walton @james_walton96]

Thanks to @StuOnSport for reaching out and doing this piece and helping us raise awareness amongst a new demographic. I'd always hoped to feature in @tri247 one day for my sporting exploits, not for my bad health. #ThereForME #mecfs #millionsmissing @actionforme @ThereForME_UK

[MEsufferer @ME_sufferer]

@MEAssociation Thanks for all your hard work over the years Neil. Regardless of what people may think, you have been amazing for the ME community over the years. Wishing you all the best for the future and I hope you can enjoy some downtime now 💙

[MEsufferer @ME_sufferer]

@AmbrosineShitr2 They're clearly not socialist though are they? This post literally proves your point wrong.

[Whitney Dafoe @DafoeWhitney]

Ron Davis's message of hope for 2025 and plea for help

by Ronald W, Davis, PhD.

Dear ME/CFS Community,

I think of you all every day as I work to untangle the complex molecular basis of this horrific disease. We have made a lot of progress lately, and many scientists around the world are taking the data and making much more informed hypotheses about the causes and potential paths to treatments. I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure.

This work requires funding and unfortunately, NIH is not very supportive and funds very little ME/CFS research.  So I must ask all of you - patients, parents, family, loved ones, friends, supporters - to donate to my research so it can move forward as fast as possible.  The more funding I have, the faster I can make progress and the more projects I can take on at one time.  This significantly speeds up research and the hopeful discovery of a cure.

If you can, please donate to my son’s birthday fundraiser, where 100% of your donation goes directly to my research.

https://t.co/TXpDROL0IQ

Right now we have multiple projects making progress. Projects on the itaconate shunt, Manganese, BH4, neutrophils, red blood cell deformability, genetics, pathogen hunting, and oxidative damage. We constantly communicate and collaborate with the best researchers around the world. We are working with an excellent team at the University of Utah who have developed three different animal models of ME/CFS and Long Covid - bacterial, mouse and zebrafish. This is allowing us to test all known drugs and multiple supplements and natural products, some of which are demonstrating an ability to block the disease process. Taken together, this work fills me with hope that my son and all of you will have some treatment possibilities quite soon. Please hang in there. We are with you every day and I send you all my love and solidarity.

If you can, please donate to my son’s birthday fundraiser, where 100% of your donation goes directly to my research.

https://t.co/TXpDROL0IQ

Thank you all so much for whatever you can contribute and may all ME/CFS patients be cured as soon as humanly possible.

- Ronald W, Davis, PhD.

(picture taken by Whitney Dafoe of Whitney and Ron)

[MEsufferer @ME_sufferer]

@Annakwood Thanks Anna. Hope you have a good Christmas yourself ❤️

[MEsufferer @ME_sufferer]

28 years old and this is me. Spending Christmas alone for the first time in my life

[E ❀ @farbeyondtired]

Thinking of all the very severe #pwme who are spending Christmas completely alone, in a silent room, in darkness, too unwell to even acknowledge Christmas. I see you. ♥️

[Tessa Munt MP 🔸 @tessamunt]

Delighted to have joined the APPG ME and been appointed an officer. Too many people live with ME, with too little understanding, and inadequate care. It’s time to engage - I’m #ThereForME.

[Sky News @SkyNews]

"ME is a very dangerous and debilitating condition."

Heather Gordon, whose daughter Karen has severe ME, speaks to @skysarahjane. It comes as there have been calls for specialist care on the NHS.

https://t.co/PAiZ4D1jU3

📺 Sky 501

[Janet Dafoe @JanetDafoe]

Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’ https://t.co/WXFX2jnlhY

[Sajid Javid @sajidjavid]

An awful condition that rarely dominates headlines, but impacts the lives of hundreds of thousands.

Ministers may have changed, but the urgency to act remains @TimesONeill

https://t.co/wX8MekZH7J

[BBC Health News @bbchealth]

'I'm scared my daughter will die in hospital' https://t.co/8Q2qyHqCvw

[Irish ME/CFS Association @IrishMECFSAssoc]

Lee Colligan finishing his marathon walk around Ireland remembering his brother and raising money for ME

Donation pages:

https://t.co/m0wJOmgGUb

https://t.co/tKMuapyePf

#SevereME #MEcfs #CFS #PwME

[ME Research UK @MEResearchUK]

ME Research UK is pleased to an announce an open call for applications from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. Funding is available to support biomedical studies at appropriate host institutions worldwide. https://t.co/Hee1BIcoJI

[Whitney Dafoe @DafoeWhitney]

@elonmusk

Please read this urgent plea for help.  You have the opportunity to save the lives of millions of profoundly suffering people and lead the way to the biggest medical breakthrough of the century.  

My name is Whitney Dafoe and I have severe ME/CFS, short for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.  I am 100% bedridden, haven’t been able to speak in 11 years, have not been able to eat or dink water in 11 years - I am completely fed by tubes.

ME/CFS affects millions of Americans and is estimated to inflict the lowest quality of life of any chronic illness, comparable to end stage Aids or end stage renal failure right before death.

Yet ME/CFS research is dismally funded by NIH.  Thus for over 60 years now millions of people have been suffering from this illness with no cure, no effective treatments and not even a diagnostic test or biomarker.  Because finding these things requires investing in research.  

Here is a graph showing the funding disparity between ME/CFS and other illnesses.  

https://t.co/B3ohHzCCjc

HIV patients live relatively normal lives today (when they have access to treatments) due to years of billions of dollars of research.  

My father is Ronald W. Davis, PhD, who was named alongside you as one of the greatest living inventors by the Atlantic.  He is one of the greatest geneticists in history, and he has transitioned all of his research to ME/CFS research to try to save me, his son.  He is dedicated to finding a diagnostic test, real effective treatments and a cure for ME/CFS.  

There is no other medical cause where your investment would have such a dramatic impact on the quality of life of so many suffering people.  

Ron is going to find a cure for ME/CFS and possibly many more illnesses.  But he needs funding to free his research and make progress happen faster.  

Will you lead the way and invest in ME/CFS research?  You would be remembered for the rest of time for making the discoveries that come out of this possible.  Even $1 million would make a huge difference, but if you really took this on and donated $100 million to Ron’s research, we could see a cure very soon.  

This is groundbreaking medical research that will transform the lives of billions of people.  Like Space X, Elon, please lead the way and take this on and change the world.  

I would be happy to setup a phone call with you and my father, Ronald W. Davis, PhD to discuss his research and answer any questions you have.  Please contact me here, or send me an email on my website

https://t.co/1htSyxmhoD

Thank you Elon.  

Sincerely,
Whitney Dafoe and millions of suffering people around the world.  ❤️ 

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#mecfs #SevereMECFS #pwME #LongCovid #Disability #ChronicIllness

[Katy B @KatyBruce108]

Huge thanks to @MattNisbet6 for running the Brighton Marathon to fundraise for @MEResearchUK
“This is such an important area of health which sadly has been neglected for many years"

"GP to run Brighton Marathon to raise funds for #ME #MEcfs research" https://t.co/adXeBaXfpB