#mecfs

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Save your spot at the global premiere of Unbound, a dance film created by twenty people living with #MECFS, #LongCovid, and other disabilities. July 29 at 6:30 PM ET REGISTER FOR FREE: #UnboundFilm #DisabilityCulture #LongCovid #MECFS

Save your spot at the global premiere of Unbound, a dance film created by twenty people living with #MECFS, #LongCovid, and other disabilities. July 29 at 6:30 PM ET REGISTER FOR FREE: #UnboundFilm #DisabilityCulture #LongCovid #MECFS

Solve ME/CFS Initiative

308,504 次观看 • 15 天前

Dianna decided to shave her head to make it easier on herself for her journey with #LongCovid and #MECFS. Many people struggling with this disease choose to do this if bed-bound for extended periods of time, like Dianna has been. Hopefully she can avoid crashes, and reduce the amount of energy it takes to wash and maintain her hair every week. Millions of people are suffering from this disease. -Kyle (Dianna’s husband)

Dianna decided to shave her head to make it easier on herself for her journey with #LongCovid and #MECFS. Many people struggling with this disease choose to do this if bed-bound for extended periods of time, like Dianna has been. Hopefully she can avoid crashes, and reduce the amount of energy it takes to wash and maintain her hair every week. Millions of people are suffering from this disease. -Kyle (Dianna’s husband)

13,642,237 次观看 • 2 年前

“It was horrendous, it was almost like being in a semi-coma. All my very basic bodily functions were struggling and my capacity to do anything like read or watch TV was zero.” Dr Nina Muirhead, describing how ME affected her in 2020 #MECFS

“It was horrendous, it was almost like being in a semi-coma. All my very basic bodily functions were struggling and my capacity to do anything like read or watch TV was zero.” Dr Nina Muirhead, describing how ME affected her in 2020 #MECFS

38,155 次观看 • 25 天前

TW assisted suicide / #MEcfs It breaks my heart to share this video. It's Luigi saying goodbye shortly before MAID/assisted suicide due to ME/CFS on 11 July 2026. Nonetheless, I also believe people should not close their eyes or look away from what is happening here. Young people are dying — or "choosing" MAID — because their suffering has become unbearable. We need help. There are millions of us. Things have to change. Farewell, Luigi. 🕯🕊

TW assisted suicide / #MEcfs It breaks my heart to share this video. It's Luigi saying goodbye shortly before MAID/assisted suicide due to ME/CFS on 11 July 2026. Nonetheless, I also believe people should not close their eyes or look away from what is happening here. Young people are dying — or "choosing" MAID — because their suffering has become unbearable. We need help. There are millions of us. Things have to change. Farewell, Luigi. 🕯🕊

34,663 次观看 • 22 天前

"For years and years I've been passed from doctor to doctor with me saying I'm so fatigued I've got all this pain... and noone could give me any answers." Miranda Hart talking about her diagnosis of ME caused by Lyme Disease on the Graham Norton show. #MECFS

"For years and years I've been passed from doctor to doctor with me saying I'm so fatigued I've got all this pain... and noone could give me any answers." Miranda Hart talking about her diagnosis of ME caused by Lyme Disease on the Graham Norton show. #MECFS

568,239 次观看 • 1 年前

“I went down to 36 kg because I stopped being able to tolerate a whole range of foods.” Wendy Matthews has lived with #MECFS for 28 years and has been bedbound for the last 7. She talks about her symptoms, how the illness has impacted her, and how #MECFS is not rare.

“I went down to 36 kg because I stopped being able to tolerate a whole range of foods.” Wendy Matthews has lived with #MECFS for 28 years and has been bedbound for the last 7. She talks about her symptoms, how the illness has impacted her, and how #MECFS is not rare.

13,357 次观看 • 16 天前

ME “is as serious as AIDS, cancer, multiple sclerosis. You feel as ill as those people do, but neglected a lot by friends and family because they don’t realise how sick you really are.” ME patient Barbara Kell, BBC Look North 2012 #MECFS

ME “is as serious as AIDS, cancer, multiple sclerosis. You feel as ill as those people do, but neglected a lot by friends and family because they don’t realise how sick you really are.” ME patient Barbara Kell, BBC Look North 2012 #MECFS

17,937 次观看 • 28 天前

“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019

“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019

18,982 次观看 • 1 个月前

BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project. Unfortunately Dr Oscar Duke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project. Unfortunately Dr Oscar Duke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

35,898 次观看 • 2 个月前

Dianna Dianna Cowern keeps showing us that there is hope for the millions of people suffering out there after infections. To everyone affected by #LongCovid and #MECFS, recovery can be slow, but it is possible! Don't give up! ❤️‍🩹

Dianna Dianna Cowern keeps showing us that there is hope for the millions of people suffering out there after infections. To everyone affected by #LongCovid and #MECFS, recovery can be slow, but it is possible! Don't give up! ❤️‍🩹

Danielle Beckman

185,731 次观看 • 1 年前

Millionen Menschen sind weltweit von #MECFS betroffen. Noch immer ist die Krankheit viel zu wenig erforscht, noch immer bei zu vielen unbekannt. Helft mit, aufmerksam zu machen. #lemonchallengemecfs

Millionen Menschen sind weltweit von #MECFS betroffen. Noch immer ist die Krankheit viel zu wenig erforscht, noch immer bei zu vielen unbekannt. Helft mit, aufmerksam zu machen. #lemonchallengemecfs

Katrin Göring-Eckardt

182,048 次观看 • 1 年前

I hate the term Chronic Fatigue Syndrome because “fatigue doesn’t even come close to describing what it is” and it’s “a minor symptom” compared to the others. Natalie Williams explains why CFS is misleading. #MECFS

I hate the term Chronic Fatigue Syndrome because “fatigue doesn’t even come close to describing what it is” and it’s “a minor symptom” compared to the others. Natalie Williams explains why CFS is misleading. #MECFS

11,122 次观看 • 23 天前