Science and health journalist with ME/CFS. Lived expertise in pacing, managing energy levels and rest. Previously at BBC Science Focus magazine. She/her 🏳️🌈
I wrote a book!!
For anyone told “you just need to pace yourself” but given no help to do so.
For you, reading this, exhausted and stressed and on the path to burnout.
For me, age 15, diagnosed with ME/CFS and sent away with a one-page flyer on pacing.
“[Intense exercise] damages your muscles, it worsens your metabolism, and it can explain why you feel muscle pain and fatigue up to weeks after the exercise.”
In 2024 we are going to STOP telling people w/ long Covid and ME/CFS to exercise. Please.
@cwillycs
@LushLtd
please, please consider something like this.
Sincerely, a customer with anxiety who uses your products to calm my mind but can’t shop in store because it’s an accessibility nightmare 🤷♀️
Anyone know any disabled researchers working on their own conditions?
Like, is there a scientist out there with fibromyalgia looking into chronic pain, for example??
The last holiday I spent with my ex, he said he wouldn’t support or help out if I “gave myself extra work” by pursuing writing/studying.
This year my partner found the recommended reading for the Philosophy course I’m taking and ordered loads of books as my Christmas present 😭
🚨 Do you work in
#STEM
?
🏳️🌈 Are you LGBTQ+ / disabled / BAME / someone that isn’t a cis het well-off white dude?
📢 I wanna know about your work!!
Please reply with a short bio so I can follow you and find out about the cool
#science
things you’re doing.
RTs appreciated! ☺️
Often, when I tell someone I have ME, they'll go; "I knew someone who had that, they recovered after xyz..."
Which is great. I'm so pleased for every single person who gets better. But evidence is <10% of
#pwME
experience substantial remission. So many of us are ill for life.
In 2021, I had a terrible relapse with my
#MECFS
.
I started pacing & was determined to do it right: learn the science, understand my body, and build back up to the life I wanted to lead.
I did it, and now, 2 years later, I’m publishing my very first book – all about pacing! 😭
I am a disabled woman, and I support trans women carers.
I am a disabled woman, and I support trans women carers.
I am a disabled woman, and I support trans women carers.
Mum watched a show about tin cans & was really excited to tell me about it.
Mum: “...AND there was this chef called Jack who made these amazing meals using canned food!!”
& that’s how my parents discovered
@BootstrapCook
& the reason I’m buying Jack’s books for them this Xmas!
My book is out TOMORROW and I have mixed feelings about something that has been years of work and learning and experimenting being in the world and under scrutiny 🥺
Yet I’m also desperate to help people who struggle with exhaustion and low energy like I do, for whatever reason!
"It is very likely that a subset of people with long COVID are actually suffering from ME," says Dr David Strain
"A greater understanding of both conditions will be to the benefit of all, particularly as we start to explore treatment options."
@DocStrain
I just saw someone post on Facebook the front page of their dissertation, celebrating that they’d just handed it in. I commented congratulations but it is taking ALL my willpower not to also mention they’ve put an apostrophe in the wrong place in their dissertation title 🙈
I am by no means recovered, but today I walked several miles and only took a few rest breaks.
This just 3 years after my most severe ME/CFS relapse. My pain was bearable, my pace slow, but I am so grateful to be able to be outside.
If anyone wants to speak to/commission a science journalist who's lived with
#MECFS
for 12+yrs, get in touch.
There is currently no cure & touting this as such is dangerous.
I also cannot believe she was told she'd "never recover, work again or have children".
#journorequest
That Dragon's Den pitch & the Ear Seeds.
Information below crediting recovery to the use of those acupressure seeds.
Already seen a tweet where someone's family member already bought them these seeds thinking they'd work.
There's going to be complaints lodged.
Amy Barrett of
@sciencefocus
has gone beyond expectations, her passion about the industry visible from miles away. Every team needs an Amy. Congratulations on winning the Best Editorial Assistant Award – you rock!
Since my ME/CFS relapse, showering has been a real struggle and brushing my long hair was painful and tiring.
So I did something a little drastic… what do you think!? 😅
#NEISvoid
#MECFS
#spoonie
Has anyone ever read a book with a character who has fibromyalgia or CFS/ME?
I would so love to spend my audible credit on a book with a protagonist like me 😭 esp because my current relapse has meant I can’t physically read books right now!!
#NEISVoid
#DisabilityTwitter
Six months ago I couldn’t do anything. I had about an hour’s worth of energy each day and couldn’t even read or write, let alone walk a fair distance or do any exercise.
But today, I swam in the sea ☀️
I am tired and aching now, but endlessly proud of myself!
Have some very exciting news that I forgot to share earlier this week –
I'm now the Chair of our employee network for disability, mental health and neurodivergence! 🥳
@haziethompson
This is really important, thank you! Pacing has changed my life, but I still get pain, I still get fatigue. And sometimes it really f'ing sucks.
Also, the people with LC in this study had to spend "about 10-15 minutes on an exercise bicycle" which would absolutely floor me.
I get why research needs this to happen, but my goodness, I feel for participants who had to knowingly induce PEM for the advancement of knowledge.
One year ago today, I asked the man I’d been dating for just 3 weeks to move in with me.
We have been incredibly lucky. My thoughts are with everyone else today who have not been as fortunate these last 12 months.
Shit like this happens and then they wonder why neurodiverse people don’t feel welcome in the newsroom.
Not only is the article bollocks, imagine being a journalist with ADHD who struggled for years to get a diagnosis, and then your colleague goes and does this?
#ADHD
OK then, you want to play? Let's do this
Here's a thread of every red flag I can identify in this article, and why they're misleading/dangerous/just generally bad
Strap in, because there are lot of them.
/1
Earlier, I walked past a Mum and young boy stood outside a shop.
Mum, on the phone: Yeah, they have the game cheaper in the sex shop.
Boy: Mum!!
M: What?
B: It’s the CEX shop, not a sex shop!
Spent this morning chatting to
@amateuradam
about new book. Interview won’t be out til Dec, but to offer an insight
I asked Adam what people can do to avoid a trip to A&E at Christmas time
He replied “just stop sticking things in orifices that don’t belong there”
"Dragons' Den lifts the lid on what happens in the business world"
You're telling me I can get thousands invested without even being questioned about the validity of what I'm selling you?? With no clinical trials or evidence to back it up??
Hi guys! I’m taking part in
#nanowrimo
this year and want to introduce myself. I’m Amy, a biro ace writer in south west England.
I’d love to meet some fellow
#LGBTQwrimo
peeps, so please do reply and I’ll follow! 🏳️🌈
Very excited, though, to be moving into my first
#publishing
role!
I cannot wait to start the next chapter of my life as an Editorial Assistant for BBC Science Focus magazine 🥳
It’s been an absolute pleasure to work with the
@imascientist
team over the last year! This really is a role where you can learn and grow — the perfect entry to
#scicomm
!!
Hmu if you have any questions at all ☺️
I’ve just moved out of my parents house. For the last 6 months they’ve put up with me storing furniture, clothes and books in their living room to the point where you actually couldn’t step in the door 😅
This is what they sent me yesterday:
So throughout Lockdown 2.0 I’ll be taking a course in Philosophy.
With that in mind, I want to find other philosophy students (or post docs, profs etc!) to follow and learn from!! Particularly any lgbt+/bame/disabled/neurodiverse peeps 💕
Tag anyone you know ⬇️ and pls RT!
@elliemidds
I totally get this. I've always kept a close eye on my energy because of
#MECFS
but realising I'm autistic really changed how I rest (and what activities avoid/limit!)
I'd love to send you a copy of my book, Pace Yourself, all about managing your energy?
So. Today is my last working day at BBC Science Focus. After 3 great years on the mag, I am taking the leap and going freelance!
It's as exciting as it is terrifying...
I have made a space to work in. I've raised the laptop screen to not hurt my neck. I'm taking regular breaks. I'm hydrated.
I'm doing everything I'm supposed to be doing to make WFH work, but I just... can't do anything but stare out the window.
It's getting harder, right?
Really chuffed to have been shortlisted for Best Editorial Assistant in the
#BSMETalentAwards
!! 😮
Well done to the rest of the
@sciencefocus
lot who are up for Best Art Team 🙌
I just spent nearly an hour on the phone with a bee researcher and now I am convinced more than ever that bees are amazing.
We need to save all the bees, not just honeybees. Not just bumblebees with their fuzzy jackets.
Save the solitary bees. Save the green bees. Save bees 🐝
@PaulaRowinska
Right!! And we need to stop thinking about exercise as being the only form of physical activity. People are out there beating themselves up because they don't meet recommended exercise guidelines but they spend hours on their feet, cleaning and tidying, running after kids...
Would love to see your subtle chronically ill apparel and accessories! 😍
A few years ago my friend gave me a silver spoon necklace for Christmas, so I'd always have one spoon saved 😭 Anyone in the
#NEISvoid
and
#pwME
communities please share your favourites below?
Went to a new doctor to get a prescription I’ve used for years to help w/painful periods.
He prescribed them, then a couple days later followed up as he’d been thinking about my symptoms and wanted to discuss pos endometriosis.
It’s scary but also that’s a good GP right there🥲
Normally when I get my hair cut I feel so happy, but I’m feeling a little self conscious about this! 🙈
The main reason I wanted it short was so it’d be a lot easier to wash in the bath, as I don’t always have enough energy to stand in the shower!
Two and a half years ago I struggled to speak for any length of time without pain or bad brain fog.
Two and a half years ago if I did too much I’d have no energy or ability to talk.
Today I’m recording my audiobook 🥹
#MECFS
#ChronicIllness
#Disability
@MMLitAgency
@bwpublishing
@bonnierbooks_uk
‘Pace Yourself: How to have energy in an exhausting world’ is the result of all my research, interviews with experts & lived experience.
If it helps just one person feel a bit better, the stress of writing & making the deadline will have been worth it 💕
I am unable to follow any more people! Which means (I think) that I need to gain some followers myself…
So if you enjoy infrequently hearing from this disabled journalist, I’d appreciate it if you could give me a RT or recommendation to your own followers!
I have woken up to a couple of congratulations tweets today... So I guess I’m going to the supreme court? Just to say —
Wear a damn mask
Pro choice
Trans rights
LGBT+ rights
#CripTheVote
#BlackLivesMatter
Learning how to throw on a wheel has been doing wonders for my health.
The pot decorated with tulips was actually part of my CBT — something to keep my anxious thoughts in.
It takes me weeks to do even one small thing sometimes, but I am just glad to be able to do it at all!
So I’m finally back working on my passion project 💕
The Discriptionary is a directory of all things disability in literature. It’s in its infancy right now, but with your help it can grow!
Submit your
#CripLit
:
Bonus points if it is
#OwnVoices
!
Oh my god, I can’t believe my novel was longlisted!! 😭
I’ve been seriously doubting whether my story was worth the pain and effort it will take to finish it.
This was just what I needed to keep pushing forward 💕
The announcement is out! A huge congratulations to the winners of this year's novel prize and all those who made the lists. Click below to see who
@Catkcho
chose. It's been an amazing year of competitions, and this was the perfect way to end it.
This week marked 1 whole year at BBC Science Focus magazine! 🎉
I’ve seen 14 issues of
@sciencefocus
on sale with my name in them. Which cover is your favourite?
Nah, fuck this.
I can’t take care of myself properly, so I can’t live on my own. If I didn’t have a boyfriend, I’d be living with my parents.
But I guess you didn’t think about disabled people when you wrote this, did you?
Twitter is once again telling me I’ve reached my limit and cannot follow anyone else until I get more followers 🙃
So if you’d like to give me a follow, I offer in return:
- photos of my dog
- rants about chronic illness
- help/advice for getting into the sci journalism world
Me, when I started this job: I’m gonna make a special effort to look nice every day, wear make up and smart shirts — you never know who you might bump into!!
Me, now: yo whaddup guys guess who actually brushed their hair today
What are your favourite low energy activities?
I seem to be having a flare up, can hardly move my hands or talk. Please help me make a thread of actually enjoyable stuff to do at times like this? 😭
#pwME
#LongCovid
#CFS
#NEISvoid
@disabledjoy
I'm a disabled science journalist! And I also run the
@discriptionary
, a directory of books with disabled characters or authors.
(If anyone replying to this wants to be featured on there, let me know! I'm in the process of redesigning ☺️)
Just saw this on Facebook but can’t find it on Twitter to share!?
“We are running the first-ever Publishing Apprenticeship!
Applications considered as they come in, so apply ASAP”
Hello to all the trump supporters who’ve just started following me because of this tweet.
I am Amy Barrett
I support —
Trans rights
LGBT+ rights
Pro choice
#BlackLivesMatter
#CripTheVote
The
@DNC
is attacking Judge
@amybarrett31
on her being Catholic. Democrat feminists are silent on her being attacked for having underage school children and a working mom. The height of hypocrisy! Democrats don’t stand with working moms and independent thinking Blacks.
Y’ALL I AM VACCINATED
Could cry with relief. But thinking of all the chronically ill people still waiting for theirs. We shouldn’t have been forgotten.
Wow, I can’t believe it! I’m a finalist for the Creative Bath Student Award 😱 so honoured to have been selected alongside the amazing students in the category!
The response to this has been amazing 💖😭
A special shoutout to those who have messaged me privately to share their work — I am so glad to be able to know about them even if others aren’t as welcoming.
Love, a queer disabled scicommer 🏳️🌈♿️
🚨 Do you work in
#STEM
?
🏳️🌈 Are you LGBTQ+ / disabled / BAME / someone that isn’t a cis het well-off white dude?
📢 I wanna know about your work!!
Please reply with a short bio so I can follow you and find out about the cool
#science
things you’re doing.
RTs appreciated! ☺️
We’ve been playing a LOT of Stardew Valley recently.
So, for our one year anniversary, I made a cross stitch kit using our characters from the game (and a Millie dog of course!) 🥰
Equality, diversity and inclusion | In the year since the Royal Society’s
#ResearchCulture
: Changing expectations conference there have been considerable efforts to improve equality and diversity in academia. Explore what has worked and what hasn’t:
Join me for a thing!! I’m so nervous as it’ll be one of the biggest things I’ll have done since getting ill, but the SYP team have been incredible at helping me and creating a truly accessible conference 🙌
My partner and I have been together for 6 months today. We started dating 3 weeks before the UK lockdown.
Do those figures... not quite make sense to anyone else?
Tell me where you would be, if you could be anywhere right now?
I’d be in the hot waters of the Blue Lagoon in Iceland, watching the snow falling and the bath steam rising.
Keep the replies coming!! This has made my week 😭💕
Next thing on my todo list is to create a
#DisabledInSTEM
day that we can celebrate each year... who's in!?
🚨 Do you work in
#STEM
?
🏳️🌈 Are you LGBTQ+ / disabled / BAME / someone that isn’t a cis het well-off white dude?
📢 I wanna know about your work!!
Please reply with a short bio so I can follow you and find out about the cool
#science
things you’re doing.
RTs appreciated! ☺️
Interviewed someone about
#LongCOVID
this week and something they said really hit home.
"You're effectively grieving for the fact that your body's not working."
I expect
#pwME
and other
#ChronicIllness
can relate?
#NEISvoid
Submitted my entry for the
@BathFlashAward
and in the email confirming receipt it says...
"Since you have left entering the BFFA until the very last day, you have earned our coveted Last Minute Club virtual badge"
😅