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#Pwme
Vlad Vexler
VladVexler
For two years in my life I couldn't speak or read due to neurological problems from ME. I asked to be surrounded by open Bach scores. I would like to
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Mary-Jane Kohler đ
TruthAbout_ME2
I wish that #pwME would be more aware of how their words could affect #Covid #longhaulers. Many Covid patients are getting close to the 6 month mark & are taking
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Hannah Davis đŠ
ahandvanish
#LongCOVID fam: it took me many conversations with patient #pwme to understand that ME is a full-body systemic illness."Chronic fatigue syndrome" was named by a dude who later apologized for
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Nora Helfand
nhelfand
Today, @NICEComms granted #LongCovid patients a dignity that #pwme (people with #MECFS) have fought for and been denied by NICE for years. 1/https://twitter.com/bmj_latest/status/1285542552700178438 BMJâs highly misleading article above m
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Christoph Ströck
cstroeckw
I have very severe me/cfs. There is something I wish I had known as a newly diagnosed moderate patient (years of mild undiagnosed disease before that). One would think it
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Tom Kindlon
TomKindlon
Press Release from NICE about its new draft #MECFS guidelines that are out for consultationhttps://www.meresearch.org.uk/nice-guideline-update-press-release/âThe draft guideline also highlights the importance of ensuring that people remai
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Physios For ME
PhysiosForME
Awareness of post exertional malaise is so key to preventing harm and yet we are still seeing obvious ignorance from medical professionals, or missed opportunities to spread the word when
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James David Chapman đ
ahelluvabird
You see, my current daily activity curve needs a bit of work. Am getting most of my steps in a single long walk in the early evening. Better if activity
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John Cullinan
beta1hat
Thanks to @PPI_NUIG and @hrbireland for supporting this work on the economic impact of ME/CFS in Ireland, which highlights a range of costs for patients, informal carers, and the economy.
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Nicola Jeffery
NicolaCJeffery
Whilst members of parliament like Matt Hancock and Jeremy Hunt praise Simon Wessley today for his #MentalHealthAct reforms for autistic people, can I remind you that this is the same
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Open Medicine Foundation
OpenMedF
In recognition of Severe ME Awareness Day on August 8th, 2020, we are taking this week to share stories from people living with Severe Myalgic Encephalomyelitis / chronic fatigue syndrome
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Tom Kindlon
TomKindlon
[Thread]âRe: Management of post-acute #covid19 in primary care - A warning to #PostCovid sufferers and their cliniciansâ by @ozfish (who has #MEcfs for 30 years)https://www.bmj.com/content/370/bmj.m3026/rr-7#LongCovid #LongHaulers #Scep
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Tapanui 'Flu ('Tui Tapanui')
TapanuiFlu
1/25 I would like to deconstruct one of the persistent myths about #MyalgicE, because I'm seeing a recurring theme where quite a few #pwme are making sweeping statements on Twitter,
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Ellena Deeley
EllenaDeeley
A medical lesson in the failure to listen to the patientâs voice in CFS/ME: on the need for co-production in CFS/ME (and #LongCovid ) services #meawarenesshour #pwme #MECFS The new
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Emily Bazalgette
EmRoseBaz
You shouldn't have published this @bmj_latest I'm glad Paul has recovered, but this is promotion of dangerous pseudo-science. I expect better from a Professor of medicine (especially someone involved with
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Undercover Autie
UndercoverAutie
Short series about the scandal of how people with ME are treated in the U.K. and beyond.(@theslowlane_MEâs post reminded me that I never shared these insta stories on twitter)If you
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