Greg Sanders (Teotima)
@greggycatLiving with ME Guitar / Composition / Arrangements / Production Teotima / @Juanitaeuka Mailing List sign-up: https://t.co/f10mDgN614
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We made the paper!! 💪💪 #MECFS #LongCovid @LCMEBillboards Thank you @helen_melon__ for finding out for us.
'Boards bid to highlight ‘abandoned’ patients' “DESPERATE” campaigners have put up a billboard advert near a city research centre calling for more funding to help better understand long Covid and ME.' H/T @AaronCa11 pressreader.com/uk/leicester-m…
🛑I wrote about what “fatigue” really means for people with long COVID and ME/CFS, and why this profoundly debilitating symptom is so often misunderstood and trivialized. (This piece also covers PEM.) 1/ theatlantic.com/health/archive…
One of the most accurate things I’ve ever seen. Everything I do comes with a cost #chronicillness
I love this! I WOULD BE HERE IF I COULD. An Arts Council England funded project for people with severe ME and Long Covid. @bethereificould 1/5 #PwME #PwLC #MyalgicEncephalomyelitis #MyalgicE #LongCovid #Access #NEISvoid #ChronicIllness #Disability iwouldbehereificould.com
Let’s talk about stats: Severe chronic illness - UK State research funding Parkinson’s (2018) £234 pp/yr Dementia (2018) £94 pp/yr MS (2016) £70 pp/yr Stroke (2012) £40 pp/yr RA (2016) £31 pp/yr Epilepsy (2018) £20 pp/yr #mecfs (2023) £4 pp/yr Fibromyalgia (2016) £1.50 pp/yr
Today is #RandomActsOfKindnessDay! When you live with ME, you often appreciate even the smallest gestures from others all the more. Here are just a few of the ways that the people around you could offer their support... #MECFS #PWME #DecodeME #RandomActsOfKindness #RAOK
I just unlocked the Invisibility Cloak in the Chronic Illness Survey Adventure! Join me in helping reveal the realities of chronic complex disease by clicking here: ctt.ec/Od1dF+ #SC4D #NEISvoid #MEcfs #POTS #MCAS #hEDS
Digging through #MECFS annals - "Interesting note: The one lifestyle change that doesn’t seem to help is exercise" from a 2011 CureTogether blog Still a novel finding in 2022 apparently! cc: @elizacharley web.archive.org/web/2017010511…
Today is International Day of People with Disabilities #IDPD2022 We want to take this moment to recognise the stigma faced by people with ME and other disabilities everywhere, and acknowledge the role that research must play in creating the change needed. #MyalgicE
New piece on the ME/CFS (and Long Covid) protest by the White House, and what it teaches us about bravery, risk—and ourselves. In many protests I studied—Tahrir, Gezi, Hong Kong—the bravery was easily visible. Here, it was in the out-of-sight aftermath. nytimes.com/2022/10/27/opi…
First went to GP with #ME symptoms in August 2018, still waiting for a diagnosis.. 4 years & counting, and I know that a lot of people have had to wait a lot longer, or are still waiting, or have given up! Who can see my 4 years and raise me? #ME #MECFS #chronicillness
#MECFS mentioned on last nights Times radio show with Kait Borsay. @gezmedinger talks about gender bias in #MECFS and the overlaps with #LongCovid.
Morning! For those who didn’t catch @daltmann and me on the wonderful @kaitborsay’s show on Times Radio last night, here’s the link. Feature starts 38 mins in. thetimes.co.uk/radio/show/202…
New video: What is ME/CFS? A brief overview of symptoms, diagnosis and treatment based on the 2021 NICE guideline. Its not being tired all the time, patients have an energy impairment that dramatically limits their activity.
Anyone in UK diagnosed with ME/CFS (>16yo) - including ME triggered by SARS-CoV-2 virus - is welcome to join the DecodeME study via decodeme.org.uk. To accelerate discoveries we need 10s of 1000s to participate.
People with ME invited to take part in major genetic study independent.co.uk/news/health/pe…
"There isn’t much room in the culture for my illness. Invisible disabilities, complicated chronic conditions and the like are not very dramatic in our moment." quillette.com/2022/09/05/fat…
Are you a #pwME or have #LongCovid and your "left ventricular ejection fraction"(used in heart ultrasound studies) is higher than 75? (Please share widely, few patients probably have this datapoint)
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