#LongME - Twitter Hashtag

over 1 year ago

This post of mine is over 4 years old. It still makes me cry and it still reminds me just how many of us #pwME have had our lives ruined and in some cases curtailed. Nothing has changed and that is the real tragedy. Have a look! #ME #LongME

Carole Bruce @CaroleBruce17

over 5 years ago

#ME #MECFS #pwme How long have you been ill? Weeks, months, years, decades? #LongME #LongMECFS #LongMyalgicE

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Emma Portch @e_portch

over 4 years ago

It’s time to admit that my chronic illness is more intrinsic to my self-concept than my professional identity. Is changing your Twitter blurb a step toward acceptance? 😂 #MECFS #LongME

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IG: rikotso_rikhotso

@Miss_Baloons

over 4 years ago

Struggling to caption this #LongMe🤷‍♀️

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fra m @frannylizzie

over 4 years ago

@CaroleBruce17 11 long and hard years. #LongME #LongMECFS

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Kira Stoops // Imperfect Working Order @TheArghonaut

over 4 years ago

The permanent headache started when I was six. In debilitating pain by age 11. Guts went out at 20. Excruciating pain began at 33. ME by 34. MCAS at 36. I'm 38. Basically always. #LongME #LongMECFS #LongMyalgicE

Carole Bruce @CaroleBruce17

over 5 years ago

#ME #MECFS #pwme How long have you been ill? Weeks, months, years, decades? #LongME #LongMECFS #LongMyalgicE

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Aliinthewoods @aliinthewoods

over 4 years ago

@doctorasadkhan @resiapretorius 'Early on there is severe hypercoagulability- best time to intervene'. 😭 #LongME

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ME since 1982 #longhaulers #longcovid @me_1982

almost 5 years ago

#LongCovid ppl must follow their own path. This person with #LongME since 1982 tried everything many times. I was desperate. I've tried graded exercise a number of times since 1991; didn't help. Tried intense psychological therapies since circa 1995; only helped with coping.

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BEA🐝VotesBlue💙ToSaveAmerica Vax💉&Care4others❤🌱 @grinningbamE

almost 5 years ago

@Dakota_150 @NINDSdirector @NIHDirector I approve of this message 💯👆👆 💔😢 When are you going to take #PwMe seriously & help? Move us forward out of the dark ages NOW! PLEASE HELP #PWME 💜💔 #WeHaveSeenThisBefore #MillionsMissing 😢 #PwMe 💜💔💜 #MECFS #Cfids #ChronicFatigue #LongCovid #LongMECFS #LongME

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BEA🐝VotesBlue💙ToSaveAmerica Vax💉&Care4others❤🌱 @grinningbamE

almost 5 years ago

@NINDSdirector 💔😢 #WeHaveSeenThisBefore #MillionsMissing #PwMe #MECFS #Cfids #ChronicFatigue #LongMECFS #LongME #LongCovid So when are you going to take #PwMe seriously & help?

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ME since 1982 #longhaulers #longcovid @me_1982

almost 5 years ago

@did_40 @NICEComms Feck me...here we go again. Nothing much has changed since the 1980s. Yes, when we're desperate we'll try anything. #LongCovid #LongME

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ME since 1982 #longhaulers #longcovid @me_1982

almost 5 years ago

@Aarsil0 @Petra_ikhebME_ Wow! I'm so sorry. I was always punished for my incapacities. Now people are "getting it". Per Fink sounds like a...{searches for a polite word but can't find one). Karina Hanson endured exteme medical abuse. X #LongME #MyalgicEncephalomyelitis #LongCovid

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ME since 1982 #longhaulers #longcovid @me_1982

almost 5 years ago

When I was young with #ME my Gran used to say how sad she was as I should be enjoying my life. Now I am old I understand her feelings. Young people now suffering so much and losing what could be wondrous years. #pwME #longME #LongHaulers

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Carole Bruce @CaroleBruce17

almost 5 years ago

There are few things more devastating than to have it drilled into you that you do not count, you are simply hysterical and that no provisions will be made for further investigations into your symptoms your protection or survival. #ME #MECFS #LongME

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BEA🐝VotesBlue💙ToSaveAmerica Vax💉&Care4others❤🌱 @grinningbamE

almost 5 years ago

@CaroleBruce17 Yes, Exactly! 💔😢 #PwMe #WeHaveSeenThisBefore #MillionsMissing #MECFS #Cfids #ChronicFatigue #LongME #LongMECFS #LongMyalgicE 💔😢 #PwMe #WeHaveSeenThisBefore #MillionsMissing #MECFS #Cfids #ChronicFatigue

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jaci Mac @jacislk

about 5 years ago

Add this to the number of #ME sufferers terrified of catching Covid & resultant #LongCovid which has high likelihood of worsening their #ME #LongME #SevereME & we certainly do have a potential worldwide health & social economic problem

Prof Nisreen Alwan 🌻 @Dr2NisreenAlwan

about 5 years ago

I don’t think UK can take a new wave of #LongCovid with rising infections & a potentially more transmissible variant spreading in younger unvaccinated groups. Already 1.1 million people with LC estimated. How will the system cope? This will def affect livelihoods & other services

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Kirstie Sivapalan @KirstieSivaP

about 5 years ago

I know it's a likely consequence of all our posts and messages raising awareness but someone asked me "Have you tried..." this morning and my heart just sank... Yes. After 32 years. The answer is always yes #pwME #MECFS #longME

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