Thread by @swastrosarah

Long 🧵Daughter's diary entry, age 12
'The writing beyond this page is strictly private and is only to be viewed with the express permission of Maeve' Of course I never asked or viewed. She died 2021 from #ME aged 27. We never identified a viral trigger. Lo & behold,
1/13

Tue 7 Aug 2007 (Three weeks after a peculiar viral infection that lasted exactly 29 days, and recovering well enough to have orthodontic brace fitted; audition for school show; pack & move house; go to best babysitter's wedding with no complaints) 'God I am TIRED!'
2/13

Sat 11 Aug, Oooohh . . . tired . . . hav a dolls house YAY! Almost completely unpacked
Sun 12, I am still vair tired! Why?! Mum has said she wants me to stay in bed all day and rest :¿ (got a tiredness headache too. Ow ow ow ow)
Fri 17, in bed - still tired :(
And so it
3/13

begins. I had the same virus. Went back to work too early. So dizzy I had to slow my gait too much & boss sent me home. 29 days off during term time from a KS3 behaviour unit is a long time off feeling pressured to go back but I recovered completely. No lasting effects.
4/13

Tired all the time is not normal. There must be something wrong. Ask everyone, what can it be? Meanwhile, like every child she's driven to do something & loves to learn so going to school isn't a question. It's just the tiredness & the headaches & being unable to fall asleep
5/13

Countless GPs, a Paediatrician, self diagnosing & moving back again to where a centre of excellence for CFS confirms the diagnosis 4 years later, just in time for A Level results & #SevereME for the rest of her life. No help from anywhere after that. The diary is a treasure
6/13

@TimesONeill
She loved reading and adopts an ironic voice from teen fiction to her style, leaping from one topic to another in a staccato of excessive yearning for a new top to intense dread of particular teachers or kids at school, without any narrative thread. School is
7/13

Stalag 14. I don't know this girl.
The voice I know is her excited joy when Dad's partner is pregnant with their first. Struggling to reconcile her love for separated parents. Shuttling between addresses over 100s of miles. The jarring adjustment to different house rules.
8/13

'Why can't I just be normal like everyone else? Shut up!' goes beyond an adolescent's desire to fit in with peers.
24 Aug 'Well, two days to go until I'm 13!' then a list of the presents she was given at her beach party the weekend before, punctuated by how tired she feels.
9/13

Sat 25 It is 53 minutes (underscored) until I'm 13! OMG! We (me & dad) went shopping today for sprog stuff and [dad's partner with snapped achilles] has borrowed a wheelchair off her friend . . . the plan tomorrow is to have a nice breakfast then a picnic with PINK CHAMP
10/14

AGNE!' (surrounded by hearts and stars)
11.57pm 3 minutes to go . . .
11.58pm 2 . . .
11.59pm I minute . . !
Sun 26 LDN room - in bed. 12.00am I am officially 13 years old and have made it to TEENAGERDOM! (surrounded by flashes and stars)
12.01pm Wow! I'm 13!
11/14

#MyalgicEncephalomyelitis #pwME #ME #MECFS #LongCovid
@TimesONeill
Nobody ever told us this illness could kill. We found that out thanks to Merryn Crofts' & Sophia Mirza's familys' courage and grit. No acute immune reaction to the peculiar virus we had. No fibrile response
12/14

to it from either of us. It lasted exactly 29 days for each of us, first me, then her. I recovered completely. She seemed recovered. Three weeks later, extreme, persistent tiredness becomes a significant feature, peppering her diary entries like the stars and exclamations
13/14

in teen lit.
It is too easy to push through because you don't want to be left out, at the beginning.
It was too easy for healthcare professionals to miss it & pathologise puberty & family instead.
@rcgp @RCPhysicians
#MyalgicEncephalomyelitis #pwME #ME #MECFS #LongCovid
/ends