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ME is Real 🥄 17h
I always thought I had gotten ME at age 25. But reading MEpedia, this part about pediatric cases stands out: "Slow processing of information makes it difficult to follow auditory instructions or take notes." I was a straight-A student until this started happening at 19.
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🌼Hayley Date🌼 3h
Replying to @wakebutsleeping
I am very lonely but very grateful to the community on here. I don't get help from GP, PIP taken away over a yr ago, don't see anyone apart from husband, children & parents really as my illness is keeping me housebound. I'm 44 but feel 94
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Alison Orr 20h
Replying to @jenbrea
Why?! Just when we’re asking for clarity of definitions Jen Brea comes up with this. She’s a liability to FFS
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Mary Gelpi Sep 18
1 petition. 51,000 signatures. 2,300 pages of names. 500 pages of stories, feedback, & comments. 350 empty pills bottles in lieu of packing peanuts. One HUGE box. Everything inside, 50 lbs. $100 to ship. Friday evening, we sent to Thank u ALL. We did it!
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🌼Hayley Date🌼 Sep 22
I'm really p*$$€d off with this insomnia. Not had a break from it for..I actually can't remember🙄. Some days I can cope, some days it's all too much. Today is an 'all too much' day
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Jacquie Wilson 🦋 6h
2 slides from Per Fink’s lecture in 2017. He is still supporting debunked ‘treatments’ of GET & CBT. The man is a danger to all . He continues to preach his harmful lectures to other medical professionals, globally!
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CatEye 47m
Ok, so (& recommendations 4 ) was thrown under the bus start of september. Now we get this: meeting to push & new coding , & . Don’t know if everybody gets it but are being sidetracked. Quietly but strategically ... shut down.
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Allison Haynes May 10h
. 2/2 One may say that Jen's tweeting as an individual, but 4 most she's synonymous w ur org. That comes w responsibility. Might help clarity if her tweets were vetted by ur org, but sheer volume is a problem. Hope u can see the dangers for org: M.E. or MixedBag ?
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cja_cali 19h
and You came here to destroy a simple hashtag like has been destroyed. We want discussions about the many diagnoses that can often be seen along w/ an ME dx. Stop posting in where we came to discuss and get away from all of you.
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Colleen Steckel 17h
Replying to @TurnItUp4ME @HHSGov
Proper criteria leads to reevaluation of every CFS patients’ diagnosis Proper criteria leads to respect for the severity of ME Proper criteria brings awareness about the most severely ill are dying due to improper def+name+codes Learn more at
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Not Just Tired Sep 22
Grateful to my sister for hosting a family birthday celebration for me today 💖 And also for making things easy for me by having a room ready for if I needed a lie down & catering for all my fussy food sensitivities!
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Gabby Klein 17h
Replying to @TurnItUp4ME @HHSGov
The introduction of SEID - another separate “entity” to add to the already very confusing umbrella “CFS” is aiding to muddy the waters and minimize and erase . We didn’t need another entity. We needed ME per as defined by experts - the ICC.
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Berlijntje Sep 23
Replying to @jenbrea
Q6?: How is in dx? I'm waiting for an appointment at ´clinic for rare diseaeses´ at Charite, as 3 of my specialists suspect an , but are not qualified to dx it. How was your dx? Specialist for? How is dx made in case of no genetic abnormality?
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Related searches

@hhsgov · @secazar
CatEye 1h
Has anyone got a link to an article w/the full story of Katrina (in english).
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Gabby Klein 16h
Replying to @TurnItUp4ME @CDCgov
Lily Chu explains That the term SEID as a sub-class would be helpful since it would allow better tracking and RESEARCH into these conditions. But, SEID was never supposed to b a RESEARCH definition!
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Jade Leanne Cooper Sep 17
I have absolutely no idea how I am going to get through today. I would do anything for just one day of feeling well/rested or a good night of solid sleep. It’s such an isolating illness which doesn’t help one bit 😴
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Laura Elliott Sep 17
Here’s a question What would you do if you were better tomorrow? What’s your first instinct? I think doctors forget that we aren’t being difficult, we just want to get back to our lives So what would you do first? I’d travel, go skydiving again, get a job. Walk. A lot.
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Carrie Patten 8h
Thank you for alerting us to this meeting that quietly took place two weeks ago. Deeply concerned orgs did not share this critical info.
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ME is Real 🥄 Sep 21
Happy to say my weeks of crash seem to be over, back to baseline! Such a great feeling. 🙂
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Jade Leanne Cooper Sep 18
People MUST stop saying ‘what’s wrong?’ when you say you feel unwell and ‘I hope you feel better soon’ to chronically ill people. You may mean well but it’s a kick in the teeth. Reality is we are NOT currently getting better
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