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The misconception that people with M.E are malingerers is baffling to me. I have never known a bunch of tougher people in my life. You have no idea the mental strength & grit it takes to live every day like this. We deserve so much better than stigma & ignorance.
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This has been my view all day, every day for 28 years. I am imprisoned by M.E. I cannot stand much light, nor sound, nor touch. I cannot speak much. There are millions worldwide just like me. We have had no medical help whatsoever.
#MEAwarenessHour pic.twitter.com/cdpJHQuh2T
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#MEawarenesshour Millions of us are ‘living’ with#ME and, despite our increasing numbers, nothing is being done to help us... Many of us have been missing from society decades, we feel ignored, forgotten, invisible. We want our lives back. Please fund#ME research.@MattHancock pic.twitter.com/ZRh6Cru0ME
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For
#meawarenesshour I’ll share a story: The first year I was sick, I called my mom every night before bed to tell her I loved her. I was so sick, that I was afraid I might die in my sleep. Then I was diagnosed with ME, and it became my “new normal” to feel that sick sometimes.Prikaži ovu nit -
Two years ago I had a bright future. Now I am unable to talk, walk or eat, and have to deal with fatigue, pain, paralysis and more. ME receives less research funding than male pattern baldness, yet is more debilitating than MS. How is this acceptable in 2020?
#MEAwarenessHour pic.twitter.com/NqiXYvOF7V
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When I had cancer, I received skilled medical attention which cured me. When my heart became faulty, I received skilled medical attention which is helping enormously. When I got M.E. I got no help at all, we are just left to rot in our beds for decades on end.
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M.E. is not a rare disease. It effects anywhere from 15 - 30 million people worldwide, yet it receives a fraction of the research funding allocated to male pattern baldness. The neglect of ME patients is one of the biggest medical rights abuses of our time
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ME patients experience a worsening of symptoms following ANY activity. This is called Post-exertional malaise (PEM), or ‘payback’. This means that if I choose to spend a few minutes talking to a friend, I’m likely to ‘pay’ for it for hrs, or even days afterwards
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ME affects multiple systems in the body. I'm going to list a few examples here. 1. Cognitive function. I forget the names of items, how to work some items. I forget what someone has said to me in minutes. Headaches.
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Excellent thread on the severity of ME/CFS by Dr Mark Guthridge
#MEawarenesshour https://twitter.com/Dr_M_Guthridge/status/1225012930036416512 … -
Before M.E my husband & I hiked up mountains most weekends. Now he’s my carer. He cooks for me, helps me bathe, manages my meds & does all the housework. We’re only in our early 30’s. We wanted more adventures. We wanted to start a family. M.E took that from us.
#MEAwarenessHour pic.twitter.com/ONU9RlpPgK
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#meawarenesshour. When you have mecfs, the day goes by very slowly, but the months and years go by very fast. Anyone with this disease would understand this. Life keeps going and we are just watching it go by. NIH FUNDING is needed urgently!!! -
We invite the OMF community to participate in
#MEAwarenessHour every Wednesday from 3-4 PM EST: One hour every week, patients and allies tweet about ME/CFS using the hashtag#MEawarenesshour. The event takes place simultaneously in all time zones to achieve maximum influence.Prikaži ovu nit -
At Christmas, he was still able to sit. This is not the case anymore.
#MEAwarenessHour pic.twitter.com/Bztf6qErBs
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#MyalgicEncephalomyelitis is an invisible illness which can have dozens of debilitating symptoms#meawarenesshour pic.twitter.com/iRsDQANWgv
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"If we add the patient serum to healthy cells, the mitochondria become dysfunctional. If we wash out the blood serum again & bring the cells into a normal environment, the mitochondria recover. This means ... we might be able to make the patient healthy again”
#MEawarenesshour pic.twitter.com/ibch9zN9EB
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February, 1983 is when I became ill. I slid downward quickly. I never was able to work again after 1986. Not one day of the last 37 years has been anything like my previous life. 37 years without a day of remission is much too long.
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People suffering from
#MECFS are so ill that they are no longer able to fight on the streets for medical care, research into and recognition of their disease. But we desperately want our lives back! For this aim we do whatever we still can: Welcome to another#MEawarenesshour. pic.twitter.com/B0H1r2PKH8
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1) One of the saddest aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is when children get ill and their parents are accused of perpetuating the illness.
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It may be a long way down the road. But we won't stop until the
#MECFS sufferers' voices are finally heard. We may not be able to walk the streets. Yet millions of patients worldwide can achieve a lot together. Welcome to another#MEawarenesshour. pic.twitter.com/AZ5X2Yfodk
Čini se da učitavanje traje već neko vrijeme.
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