phleb0tomist

[phleb0tomist]

the state of ME services in the uk is rank. 2 years on the wait list only to find out that the only clinic in my area doesn’t even have gurneys. they apparently have exam tables in some of their rooms but thats not a proper surface for a bedbound person and they can’t even guarantee there will be a room with an exam table free on the day of my appt even though we’ve been liaising for weeks. idk how im going to manage the full appointment bc i can’t physically sit up for 3 consecutive hours. no one witj severe/very severe ME could sit up for hours in a row on a typical day unless a miracle happened.

no gurneys. no beds. this is bare minimum. claiming to provide services to severe ME patients while not even providing a place to lie down for ppl who’ve had to spend decades horizontal is conscious & wilful cruelty

[phleb0tomist]

old blood tubes from when i used 2 do phlebotomy

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[phleb0tomist]

brimming with joy rn. i got to sit in the garden in the sun today for 10 mins and i saw three crickets and an airplane and clouds that looked like butter spread on toast. im still coming out of that crash i had in june and I wasn’t sure i’d get to sit outside again before summer was over but i diiiiid and it was so good

[phleb0tomist]

oh yeah the results just came out for the biggest study on myalgic encephalomyelitis to date, Decode ME, and since it’s severe ME day it seems a good time to share. they weren’t sure they’d find a genetic component but they did! i can’t express how much this means. there are decades of stigma and poor science attached to the ME diagnosis with most doctors receiving no education on it and thus believing the popular (dangerous) misconstruction of ME as a bad attitude or a refusal to ‘believe’ in oneself. people die preventable deaths bc of the popular view that ME is behavioural or caused by pessimism. but this study is a meaningful piece of evidence to the contrary.

the study analysed the dna of 15,000 patients and found that people with ME have significant genetic differences. they identified eight genetic signals involved with the immune and neurological systems, which is in line with the expert consensus (and the belief of patients) that ME is primarily a neuroimmune condition and is not psychosomatic. the signals that predispose a person to ME are not the same as those that predispose depression or anxiety. with any luck, this will be a step towards real research that doesn’t just study how much patients ‘believe in themselves’ but instead looks at the physical mechanisms behind the symptoms… i’m so so hopeful that in my lifetime we’ll see at least some kind of treatment, some kind of relief or public understanding. anything. i think this is a big step!!

[phleb0tomist]

hey, it’s severe myalgic encephalomyelitis awareness day. i’m hopeful that things will change. i’m hopeful that people will learn about us.

infographic credit; see more here

please hold us in your heart. ME itself is not rare (it’s over 5x more common than MS), but it’s really rare to find someone who actually knows what severe ME is! ME has been misrepresented as a vague fatigue syndrome. it is not. it’s a complex multisystem illness with a predictable pattern of neuroimmune crashes that come 24-72 hrs after physical or sensory exertion. it can become progressive and fatal. millions of people with severe ME are isolated and neglected by doctors whose knowledge of ME is based on outdated research.

it seems as though long covid can sometimes progress into ME, so cases are increasing, but many of us have had it for decades already. it crushed my life when i was a kid. but i’m still hopeful.

[phleb0tomist]

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Abandoned examination room | source video

[phleb0tomist]

[phleb0tomist]

guy who hasnt posted selfies in months: I love posting selfies and i do it regularly

[phleb0tomist]

hold me. today i had my last session n completed 2 years of psychotherapy and i feel like im getting divorced and not in a good way

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out of all the Bedbound Activities, ive found such unexpected solace in learning geography. its worth knowing n makes me feel integrated with the world. my room is so static and dark and small and but the world is so big and even tho I haven’t really been ‘in’ the world for a decade I feel like i’ve met more of the earth now. i can get 195/197 counties from memory

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