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Christina Baltais ☀️🌻 Aug 5
It’s Awarenesss week. 1/4 of are severe, yet ME remains the lowest funded disease in proportion to disease burden. I froze a blue rose to symbolize the abrupt halt and shattering of ones life when you develop this disease.
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lingerie daddy 🍒♿ Aug 4
One thing I've realised is that people don't get what mean by "rest" Rest according to my partner: mosey around the house in PJs, read a book, maybe bake cookies. Rest with ME: Lie in bed all day with ear plugs and an eye mask. No sleeping. Hope you don't need to piss.
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Leia Jul 29
I lost a friend last week to . Writing this feels surreal, I'm devastated and in shock. But I'm also angry. This HAS to stop. We need adequate care for severely affected . The neglect of this illness is killing people.
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MortenGroupOxford Aug 6
can be stigmatised for many people, passingly call the illness a minor inconvenience, saying it's in the head of . With an accurate method to diagnose it, then those who have ME/CFS could finally be given the recognition and empathy they deserve.
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Margherita Hart Aug 5
Dear , thank you for getting me through the last couple of years since I became housebound - after being dismissed and left to rot by my GP I don’t know how I would’ve coped without the support and knowledge I’ve gained from this community.
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Steph 21m
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Dr Ben Marsh 1h
So....exertion makes you so ill it can wipe you out for days, weeks, longer But is telling you to increase your exercise every day even if it makes you worse 🤔
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TheFibroWarrior 6h
This is my dumbass usually on a flare up day. Anyone relate?? 😂🤣
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Danni Watts Jul 31
Since I shared this and had an overwhelming response what has become so painfully clear is how many relate to it if they are or . This is why education for is so important to stop people going through the experience I did when I first became unwell.
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#MEAction Network Aug 5
Today's US Advocacy Community Meeting about NIH was a great success! Big thank you to Ben & the amazing activists who have been working hard on this behind the scenes. 98 people attended today’s call--exciting to see so many faces!
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Paul Carter Aug 2
It should not be the responsibility of to prove the existence of their illness. Recovery is hard enough without ignorance to contend with!
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Hannah Aug 5
, this week is my 5-year anniversary of "lasts." Last mountain I climbed, etc. I don't usually think about it in those terms, but with everything else in my life right now, it's a bit much. Animal memes, please?
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Vlad Vexler Aug 5
Ep. 68. Why I believe ME is the biggest social injustice in the Western world today.
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Dan Wyke 9h
"Doctors suspect she has developed ME, also known as chronic fatigue syndrome, as a result of the virus."
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Singlerheum ♿🌹 2h
Been meaning to snap my hydrangea for a couple of weeks, it's such a beautiful bright shade of pink!
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Joan McParland Aug 4
Any more feeling overwhelmed reading post Covid longhaulers patient’s distress, at going though just months of what we’ve went through for 20+ years & no end in sight They’re v scared they’ll never recover, I remember that fear, takes abt a decade to acceptance, if ever
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ME Association 6h
Severe ME Week 2020 - Untold Stories "“Having Severe M.E is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day." - Merryn Merryn died aged 21 from Very Severe ME
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MortenGroupOxford 12h
Without a clear quantitative method too diagnose , it becomes harder to create repeatable, reliable and ultimately useful studies and clinical trials on treatments for . With we can help make studies for more accessible and significant.
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Vlad Vexler Aug 4
Ep. 67! I had severe ME for 2 years. It’s worse than you imagine. It takes you out of time. (*This video is recorded during a less good moment for a moderate patient.)
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MEG93.3 Aug 5
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