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We call upon the
@WHO to take action to: recognice M.E. as a "serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients"#MECFS#PwME https://tinyurl.com/y8uunljo -
Angry GP: "This is too much!" pointing at my list of symptoms I prepared for the meeting. Eh.. I'm sorry? But I think so too, that's why I'm here. =/ Neurologist: "There's no nerve there." when I asked about pain under my skin. How do we sense anything from the skin then?
#pwME -
My
#pwme daughter (#VerySevereMyalgicEncephalomyelitis) started 2019 with hospitalization. A specialist examined her and told her he doesn’t believe that M.E. can lead to severity like hers. Any advice on how to convince him? I am compilng links to very severe M.E. patients. Thx -
I can't tolerate a lot of vegetables or carbs. I can't tolerate lentils. Forcing me to eat that way would make me crash. Some people with ME do bad on vegan or vegetarian diet and can make us worse.
#pwme -
NHS doctors have been dismissing ME patients for years, telling them it's 'all in their head', but no one wants our blood. Odd that.
#pwME#MyalgicE#MEcfs#MyalgicEncephalomyelitis@NHSEngland@gmcuk@NICEcomms@rcgp@NHS_HealthEdEng@NHSMillionhttps://www.bbc.co.uk/news/health-11465723 … -
Still in a flare from Christmas, keep resting, keep waking up hoping today is better. Nope. I can’t wait any longer to write my essay, going to be a fun weekend
brain fog and omitting words. #pwME#chronicillness -
“As an observer-participant, I can say with certainty that ME is not depression; neither is it laziness, nor something that can be 'snapped out of' or 'pulled together' and it is definitely not just tiredness.”
#PwME#MyalgicEncephalomyelitishttps://spark.adobe.com/page/uNLWHP6la8KmK/ … -
This falls in category of important circulatory info the
#MyalgicEncephalomyelitis community has been discussing for years. Learn more about circulatory impairment in#PwME in this important guest blog post by@SpurginMaryann "Circulatory Impairment in ME"https://www.meadvocacy.org/circulatory_impairment … -
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Hey
#pwME, super short survey about our preferences for researching our quality of life with ME https://twitter.com/jaguilarsw/status/1079103686679429120 … -
Thank you
@OpenMedF so, so much!#mecfs#pwme https://twitter.com/OpenMedF/status/1079746840592031745 …
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GET & CBT for
#MyalgicEncephalomyelitis
#pwME Old OUTdated MISinformation that, indeed, needs correcting. Thank you ! https://journals.sagepub.com/doi/full/10.1177/1359105317722370 … -
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@NIHDirector: You have the power to unlock key discoveries for ME. We cannot wait another generation for diagnostics and treatments. We demand outcomes for#pwME within the next 5 years. We need your bold leadership now! #DeliverResults4ME#MEAction -
Brand new flipping book for 2019 with some new designs
Order at http://www.cards4investinme.co.uk
Delivery £3.50, free on orders £30 and over
+ labels advertising IiME to stick on your cards
All my profit goes to @Invest_in_ME#PwME#MyalgicE#LetsCresearch#CofEforME#MEresearchhttps://twitter.com/flamingopaperie/status/1081109263282593793 … -
Does anyone know what that knitting is called that you do with the giant needles I want a jumper knitted in it
#pwme , memory difficulties
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There are two excellent films Unrest on Netflix and 'Voices from the shadows' on vimeo watch free http://Www.voicesfromtheshadowsfilm.co.uk BUT These were made by
#pwME or with interest in ME Shocking underrepresentation in mainstream media :-(#MEcfs#MillionsMissing#MyalgicE -
Myalgic Encephaloymyelitis/Chronic Fatigue Syndrome research in 2018 Of these 13 diseases,
#pwME has the worst quality of life Yet the number of#MECFS scientific publications in 2018 comes a distant last@drval@FamHealthGuide@HHSGov@AmerMedicalAssn@PublicHealthpic.twitter.com/teN6igh9GU
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Dear
#spoonie friends, I’m moving conversations on#chronicillness#HSD#EDS#pwme to a new twitter account:@zebrahannasus. I decided to share my journey because I was working in#health innovation. But I’m moving to a different sector with different interests. See you soon! -
She had a person with ME once who had a detached retina & hadn't sought treatment because they assumed it was their ME. I hope that 2019 is the year that
#pwME feel heard and treated by drs so no more people risk damage because we just assume no one will believe or treat us.Show this thread
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