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Michael VanElzakker Jul 10
Twitter hive-mind: I'm interested in somewhat unique onset stories preceding diagnosis.The “normal” story is a flu-like illness, but I’ve also heard post-dental-surgery, post-Nepalese-parasite, post-concussion, etc. Any other “not standard” onset stories out there? Thanks.
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Alison's head Jul 13
Lately I feel like is two things. Waiting for treatment, or waiting to die. It’s just luck which might come first
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Alison's head Jul 15
I really wish I was getting up and going to work tomorrow. I know 99.9% of people don’t, but I really do.
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Lisa Gibbs Jul 13
Am I the only one who drives herself nuts thinking "is this a virus or has my just gone crazy?" until someone else goes down with it?
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MECFS Support Group Surrey Jul 10
We have been informed that NICE are removing us from the stakeholders list and that we were added in error. We shall be appealing this.
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MECFS Support Group Surrey Jul 11
Any other regional groups who have been taken off the NICE stakeholder list who are interested in lodging a complaint please let us know. Group pressure needed.
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Emma. 💋🎤🎭 Jul 12
How ill are people with ? It is a serious neurological immune disease. I am moderately affected. Had to stop work, my Mum helps make my food & I need help walking when I leave the house & wheelchair for anything far. Please RT for awareness!
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Sally writes 👩‍💻 Jul 13
Printed out my book for the first time in ages. When M.E. is whipping my butt, I need to remember how many years I spent when the idea of writing one chapter was something I thought would never possible, let alone 47k words 💜
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Derya Unutmaz, MD 11h
From CDC website for the record: “ME/CFS is a biological illness, not a psychologic disorder. Patients with are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.”
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Josh Evans Jul 12
Had such a hard time lately with illness and the heat! Been feeling so much pressure, and it doesn't help having M.E! Hope you're all OK?
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Sonya Jul 13
THANK YOU for requesting a House hearing on the clinical care crisis! ME is a severe neuro-immune disease that disables 1 to 2.5 mill Americans, costs the U.S. $17-$24 Bill/yr, and has no treatment or cure. Patients & family members appreciate ur support!
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Cort Johnson Jul 14
The Cortene Chronic Fatigue Syndrome (ME/CFS) Drug Trial Begins -FDA and IRB approval has been achieved and the experimental drug trial which hopes to reverse ME/CFS will begin soon. Could we be so lucky? Find out more....
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Sten Helmfrid Jul 12
Blease & Geraghty: “We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with .”
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Jennifer atypical poliomyelitis Brea Jul 10
Can someone who knows more than me please tell me why, despite maybe a dozen studies demonstrating persistent enteroviral infections in patients, this strand of inquiry has essentially been dropped?
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Je Banach Jul 12
With Ron Davis's grant and the recognition of 's amazing documentary, and the new center opening at etc., I feel really heartened by all of the progress this year. Conversations and narratives really matter--they can lead to cures.
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Tom Kindlon Jul 14
From the updated CDC website created for healthcare practitioners. Bolding is theirs.
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Chris Afford Jul 15
Just watched Dr Ron Davis' () talk on the conf dvd... fascinating, inspiring and hopeful! Metabolic trap theory especially intriguing as was the trypanosome / sleeping sickness link.Thanks Ron, and all collaborators for your amazing work
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ME Life In a Tweet 13h
I used to really pride myself on my muscular strength, challenging boys to arm wrestles and never letting anyone carry anything for me no matter how I struggled. Now I can hardly lift the kettle and it feels, well, just totally shitty. Just saying.
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Emma. 💋🎤🎭 Jul 12
is terrifying. When you crash, it is like you’re paralysed, in and out of consciousness. Wanting to throw up, your head going thud thud thud. Internal tremor, dizziness, spasms all over, you cry & just pray it eases. This is me today.
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Something delicately vicious, no doubt. Jul 9
I want people to be angry for me, to be raging on my behalf about how little gets done to for people with . I want other people to be indignant, grief-stricken at my loss, at all our losses. Why is it mostly just us, the , who have to shout, when we can't?
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