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longcovidquilter.bsky.social
Long Covid Quilter
@longcovidquilter.bsky.social
230 followers 460 following 36 posts
Sewing as a survival practise. There are no treatments. Yet. Long Covid since March 2020, not recovered.
#longcovid
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Reposted by Long Covid Quilter
longcovidadvoc.com
It's International Day of Persons with Disabilities.

To mark this we are looking at ways to help those house-bound or bed-bound with Long Covid or chronic illness with vital screening & testing. 🇬🇧 /1
🧵👇
December 3, 2025 at 1:42 PM
Reposted by Long Covid Quilter
longcovidjourney.bsky.social
The heat isn’t just uncomfortable, it’s disabling when your nervous system’s already fried.

🔥 Dysautonomia + Long COVID =
🧠 Brain fog
💓 Heart racing
💦 Sweat chaos
🪫 Energy crash

Stay cool. Rest. You’re not imagining it.

#LongCovid #MECFS #HeatSensitivity #POTS
Beige background :Image with copy on a beige background: When the nervous system is already dysregulated, heat just adds fuel. 🧠 Brain fog 💓 Heart racing 💦 Sweating or not sweating at all 🪫 Crushing fatigue It’s not “just the heat.” It’s #dysautonomia. It’s #LongCovid. Stay cool. Rest. You’re not alone. 🔁 Share if you feel it too.
July 1, 2025 at 3:01 PM
Reposted by Long Covid Quilter
actionforme.bsky.social
1/4

📢 APPG update

The first joint meeting between the APPG on ME and the APPG on Long Covid is taking place on:

🗓️ Wednesday 14 May
🕔 5pm – 7pm

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid
Graphic showing the Houses of Parliament and Big Ben with logos for Action for ME, Long Covid Support, and the ME Association. Text reads: “Joint ME and Long Covid APPG meeting agenda. Weds 14 May, 17.00 – 19.00.” Logos for the APPG on Myalgic Encephalomyelitis and APPG on Long Covid appear at the bottom.
April 24, 2025 at 8:30 AM
longcovidquilter.bsky.social
Costs that can be, to some degree, mitigated by investing in Long Covid research, clean air in (at least) schools and public buildings, masks and public health communication.
bhanlon15.bsky.social Billy Hanlon @bhanlon15.bsky.social · Apr 22
Healio: 'Significant economic burden of long COVID will only continue to grow, experts say'

'Lee said that projections for the future cost of long COVID showed estimates of $2.6 trillion in reduced health, medical care spending & lost earnings over 5 years'

www.healio.com/news/infecti...
Significant economic burden of long COVID will only continue to grow, experts say
The economic burden of long COVID may exceed $2 billion and reach nearly $31 billion when symptoms last between 1 and 3 years, and researchers say these numbers will likely continue to grow as COVID-1...
www.healio.com
April 22, 2025 at 3:29 PM
longcovidquilter.bsky.social
This economic argument works for those unwell with Long Covid. It is not just about getting back to employment, it’s about being able to care for our families and our communities, and the dignity to rebuild our lives…
cabruce.bsky.social Carole Bruce @cabruce.bsky.social · Apr 22
Excerpt from the article on #ME in The Times today:
April 22, 2025 at 8:09 AM
Reposted by Long Covid Quilter
thereforme.bsky.social
The UK government is proposing significant changes to welfare benefits. These reforms could profoundly impact individuals with Long Covid and ME/CFS.
We've launched a survey to gather your insight 👇
Text in graphic says: Survey: have your say on welfare benefits reform. Calling people with long COVID and ME/CFS At the bottom are 4 logos - long COVID support, action for ME, ME local groups network and #ThereForME
April 16, 2025 at 11:07 AM
longcovidquilter.bsky.social
How to hack quilting with Long Covid and cognitive dysfunction? Templates for everything! When I have a less foggy moment, I plan ahead. Accurate templates = cutting fabric without measuring anything. Zero panic, more ease.

#HopeStarQuilt
#longcovid #pwLC
#survivalpractise
#quilter #quilts
A strip of yellow sunflower fabric sits on a cutting mat. One end the fabric is covered by a quilter’s ruler, marking up a square. An orange square card template sits above the ruler to indicate the correct size for the fabric. The template has a series of shorthand pencil notes indicating how many of that shape are required, how they need to be subsequently cut, and which pattern piece this is for the Hope Star design (recessive flame).
March 27, 2025 at 9:21 AM
Reposted by Long Covid Quilter
longcovidsupport.bsky.social
📣 Please sign this petition asking Wes Streeting & @ashleydaltonmp.bsky.social to:

🔴 Develop a strategy to fund #LongCovid biomedical research & treatment

🔴 Stop clinic closures

🔴 Train healthcare professionals in order to expand specialist services

Nearly 15k signatures!!

Link below ⬇️

#ME
March 25, 2025 at 2:50 PM
Reposted by Long Covid Quilter
chantzy.bsky.social
Thank you @rollingstone.com for the front page coverage

Make the invisible visible. Long Covid is REAL and a growing crisis
Rolling stone front page - caption: five years of pain, fatigue, and gaslighting: life with long covid Pictured: activists in respirators protesting with signs in front of White House
March 15, 2025 at 10:09 PM
Reposted by Long Covid Quilter
greensagainstcovid.bsky.social
All parties, governments and organisations should have policies for real action on #LongCovid #LongCovidAwarenessDay
March 15, 2025 at 8:03 AM
Reposted by Long Covid Quilter
toshiakima.bsky.social
If you pretend that COVID is over, the next COVID infection could be the day the pandemic truly started for you and your private forever lockdown #longCOVIDAwarenessDay
hollystortholme.bsky.social Holly Stortholme @hollystortholme.bsky.social · Mar 15
Long Covid patients that I see are getting younger. Avoid infections, breathe clean air, wear a respirator. Covid is airborne.There’s no treatment for Covid or long covid. Covid damages organs, immune system, can maim and cause death. Mitigate!

To LC patients- I see you.
We stand together.
March 15, 2025 at 5:20 AM
longcovidquilter.bsky.social
My Long Covid chronic fatigue, cognitive dysfunction’s & disabilities are overwhelming and relentless. All. Day. Every. Single. Day. For over 5 years. I have never recovered.

#longcovid #pwLC
#LongCovidAwarenessDay
#cureLongCovid
#fundLongCovid
#ResearchLongCovid
@longcovidsupport.bsky.social
The words CURE. NOW. are printed in capital letters onto narrow rectangle of sunshine yellow and white gingham fabric in blue marker. Slivers of yellow are visible between the pen strokes. This was my contribution to the Long Covid Support campaign banner for Long Covid Awareness Day 2025.
March 15, 2025 at 11:02 AM
longcovidquilter.bsky.social
Today is the 5th anniversary of my one Covid infection. The most brutal day of the year. The day when the accumulated grief and loss hurts the most. Hope for a treatment that works is an increasing difficult commodity to hold on to.

#longcovid #pwLC #CureLongCovid #TreatLongCovid
March 13, 2025 at 9:26 AM
longcovidquilter.bsky.social
@zakfoster.bsky.social hey Zak, can you add me to the Nook family starter pack?!
February 11, 2025 at 2:04 PM
longcovidquilter.bsky.social
Long Covid Quilt. When I am healed & rebuilding my life, I want to draw upon the dandelion’s ability to thrive in all terrains. The cranes represent my local white egrets; reminders that it is possible to witness magic when I can get outdoors.

#longcovid
#pwLC
#survivalpractise
#quilter #quilts
A quilt made of square blocks with three strips of fabric. One block has red and apricot fabric, another has black and apricot fabric. These are alternately arranged horizontally and vertically to create a basketweave pattern. The black fabric has delicately drawn dandelions and the red fabric is a Japanese kimono fabric with equally delicately drawn cranes and flowers. This is a close up of one of the vertical red blocks with a crane, pictured standing on one leg with its beak open. The water is pooling in small waves at its feet, with pink and red flowers and verdant foliage. There is a strip of apricot fabric next to the crane with quilted lines in a cotton thread that changes from pale yellow to deep orange.
January 28, 2025 at 10:18 AM
Reposted by Long Covid Quilter
veronicabane.bsky.social
Did your child lose their book collection in the Los Angeles fires? Are you a teacher at a school that lost its library or your classroom library? Whether you need one book or a whole library, we can replace your books. 📚

Everyone else, please boost this post so we can connect with those in need. 🙏
January 16, 2025 at 3:35 PM
Reposted by Long Covid Quilter
longcovidsupport.bsky.social
📣 At @theguardian.com they want to hear from people with #LongCovid about how it has affected their lives.

They have a form to fill in. Link: www.theguardian.com/society/2025...
Share your experience of long Covid
We’d like to hear from people who have long Covid and how it has affected their lives
www.theguardian.com
January 16, 2025 at 8:22 AM
Reposted by Long Covid Quilter
longcovidsupport.bsky.social
1/3. The 15th hour of the 15th day of every month means raising awareness of #LongCovid.

This month, we want to highlight our #LongCovidAwareness Day Banner 🎨

A big thank you to everyone who has sent fabric or filled out the form! 🙏

If you’d like to take part, see the link below for details. ⬇️
Embroidered piece of white rectangular piece fabric on a background of red patterned fabric. White piece of fabric has red embroidered stitching on it that reads Devastation of a life & lives. Rectangular embroidered piece of fabric divided into 4 triangles. 1. Green patterned fabric with purple 'Bridie'. 2. Pink patterned fabric with red 'ME/CFS'. 3. Purple and white gingham fabric with yellow 'LC'. 4. White and purple fabric. Red stitching around the edges. Green and yellow grid background. White rectangular piece of fabric with red, green, navy and black writing on. Three sections. 1. Sick note written times with red 'IGNORED' written over it. 2. HMRC, employee, leaving work with red 'SACKED' written over it. 3. PIP, DWP award £0.00 with 'DENIED' written over it. A rectangular piece of white felt like fabric with writing on. 'Ash' written in the middle in a red and orange pen. Two purple buttflies covered in red and orange flames drawn either side green and yellow grid background.
January 15, 2025 at 3:37 PM
longcovidquilter.bsky.social
Making a start on my banner contribution for Long Covid Awareness Day 2025. It’s hard to believe I’ll be on year 6 of Long Covid by then.

@longcovidsupport.bsky.social
#longcovid
#curelongcovid
A fragment of sunshine yellow gingham fabric is masking taped over a paper template on a green cutting mat. The word ‘cure’ has been written in capital letters onto the fabric. The word ‘now’ is visible through the from the template below.
January 13, 2025 at 12:30 PM
Reposted by Long Covid Quilter
longcovidsupport.bsky.social
📣 Share your voice!
Contribute to our Long Covid Support Banner, a collective tapestry representing those living with #LongCovid & their caregivers.

This banner will be the centrepiece of our Long Covid Awareness Day campaign on March 15th.

See more exciting details here:
tinyurl.com/LCSBanner
Sky blue background with white text: "SHARE YOUR VOICE. Click the link to learn more..." Small Long Covid support logo in bottom left corner.
January 3, 2025 at 3:29 PM
longcovidquilter.bsky.social
I wish I could see a UK equivalent headline investment…
bhanlon15.bsky.social Billy Hanlon @bhanlon15.bsky.social · Dec 23
NPR: 'A push to understand long COVID'

'The National Institutes of Health announced a $300 million investment to research treatments for long COVID'

'In the US, there are an estimated 17M adults with LC. Many unable to work or care for their families'

www.npr.org/2024/12/23/g...
Biden commutes 37 federal death row sentences. And, a push to understand long COVID
President Biden commuted 37 of the 40 men on federal death row to life without parole this morning. Here are the factors that drove his decision. And, a push to better understand long COVID.
www.npr.org
December 23, 2024 at 4:28 PM
Reposted by Long Covid Quilter
thereforme.bsky.social
David Putrino is #ThereForME! @putrinolab.bsky.social is a leading #LongCovid clinician and Director of the @mountsinainyc.bsky.social Center for Recovery From Complex Chronic Illnesses.

His message: “Happy Holidays! We won’t stop fighting for pwME! Love David”

#PatientSafety #pwME #pwLC
A pretend polaroid shows David Putrino posing for a photo holding a #ThereForME Christmas card. The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "7". The design is in the #ThereForME colours. This second image displays David’s handwritten message. It reads: “Happy Holidays! We won’t stop fighting for pwME! Love David”
December 7, 2024 at 9:00 AM
longcovidquilter.bsky.social
I’ve been trying to function with teaspoons of activity; full spoons are impossible. It’s frustrating. To counteract the feeling of nothing changing I marked my start point, so I could see hand stitching progress with my quilt binding.

#spoonies
#longcovid
#pwLC
#survivalpractise
#quilter #quilts
The reverse side of a quilt fills the lower third of the image. A plastic clip on the right hand side of the quilt binding is a short distance from a row of clips holding the un-sewn binding in place. The front of the quilt is visible as a cascade of folds, in apricot, red, and black fabrics.
December 2, 2024 at 4:19 PM
Reposted by Long Covid Quilter
silverpebble2.bsky.social
My Etsy shop’s called silverpebble.

If you could give that 👆🏼bleet (?🐑) a RT boost it would help so much. I make most of my living from my Etsy shop atm due to lots of illness this year. Thankyou 🌿
December 2, 2024 at 9:45 AM
longcovidquilter.bsky.social
Today’s wins are a mitered corner (it’s so satisfying when the edges meet so neatly), and stopping before I needed the seam ripper to undo ‘sewing whilst too tired’.

#longcovid
#pwLC
#survivalpractise
#quilter #quilts
The reverse of the quilt is shown to reveal the binding with a hand stitched mitered corner. The backing and binding fabrics are a damson red, the quilting is a golden yellow top stitch. Glimpses of the quilt top are visible underneath with the dandelion design in gold being the most prominent.
November 22, 2024 at 5:10 PM