What's up with the GPs in Australia? They keep promoting GET as if the PACE trial were actually not a fraudulent, discredited piece of crap! virology.ws/2026/03/09/t...
What's up with the GPs in Australia? They keep promoting GET as if the PACE trial were actually not a fraudulent, discredited piece of crap! virology.ws/2026/03/09/t...
For every woman in the #ME & #LC community on #InternationalWomensDay
Endless gratitude to every one of you for your courage, strength, compassion & resilience
We're suffering due to widespread medical misogyny &
our resistance will change how medicine treats women everywhereπ
I didnβt know it was #InternationalWomansDay #IWD today.
All I want is a safe home where I can be healthy again.
chuffed.org/project/1619...
#MutualAid #DisabilityMutualAid
πΈπ
A dark blue graphic for International Womenβs Day featuring a purple and blue gradient hand icon with a heart in the palm at the top. The word "WOMENS" is written in large block letters, with each letter containing a black-and-white photo of women. Below it, the word "Day" is written in pink script. At the bottom, pink text reads: "Diseases that mostly affect women β like Long Covid and ME β are still trivialised, psychologised, and dangerously underfunded. Medical misogyny isnβt a relic. Itβs alive and well."
π On #InternationalWomensDay we honour the women with Long Covid and ME and allies who keep pushing for truth, research, and care.
βοΈListen to women. Fund the science.
Throwback: packing b4 landlord sold the property (homeless since Sept & on the street at end of Mar if we don't find something asap...!)
Ways to help usπ
V: venmo.com/u/Donia-Lilly
Art: donialilly.com
eBay: ebay.com/usr/island_art
PP: paypal.me/donialilly
Gfm: gofund.me/283d83d9
#CatSky #Cat #HELP
#MyalgicEncephalomyelitis anniversary. A weird virus changed my life forever 20+yrs ago today. So many years lost. Then 18 yr later I got #Covid 1/5. Organ damage.
I almost forgot.
Expectations low but I canβt have basics. Thought Iβd escape abuse & be safe by now.
#PwME #MEAwarenessHour #MECFS
Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness.
The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.
π ONLY 25 DAYS UNTIL WE CAN NO LONGER STAY IN THIS MOTEL & I LOSE MY HOUSING VOUCHER AS WELL
Iβm disabled & weβve been homeless 5+ months & the clock is tickingβ¦
Please share & if you know of any single-story rentals in this area, lmk:
#PNW #Redmond #Kirkland #Sammamish #Eastside #SnohomishCounty
A black and white photo of flowers in a vase on a table. The room is dark, and one table lamp lights the flowers and nearby objects like candles, a speaker, and artworks that hang on the wall.
If there are flowers in our house, I try to use the opportunity to photograph them. The light in my room is a big problem, and I canβt stay upright for long without my symptoms worsening. So, any close-up or macro work is usually out of the question.
#MECFS #Photography #Flowers
Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). π§΅
youtu.be/pk00btt7CVs?...
More on OMf's bold BioQuest Study
π 1000 samples
π Wide omics approach
π Cohorts of ME, MS, Burnout, Long COVID, depression to filter out bio signals of fatigue
π Hope to produce 5-20 biomarkers to identify subsets
π Phase 1 of 3
Good article π
Purple background with black and white silhouette of person sitting and candles. βnewdisabledsouth β’β’ β’ NEW DISABLED SOUTH MARCH 1ST IS DISABILITY DAY OF MOURNING Since 2012, Disability Day of Mourning has been observed to recognize disabled people who died by filicide.β
Purple background with black and white pictures of an empty wheelchair and a woman looking upset in another picture. βnewdisabledsouth newdisabledsouth NEW DISABLED SOUTH 2/3 MARCH 1ST IS DISABILITY DAY OF MOURNING Filicide is when a relative or household member kills a relative with a disability. Every year, hundreds of disabled people die by filicide. In the last 5 years, over 548 people with disabilities have been murdered by their parents, relatives, or caregivers. These circumstances are not isolated. They are part of a cycle of harm where the disabled victim is vilified, and the murdering caregiver or relative is given sympathy and grace in the criminal legal system.
Purple background with black and white photo of people lighting candles: newdisabledsouth β’β’. NEW DISABLED SOUTH 3/3 MARCH 1ST IS DISABILITY DAY OF MOURNING Today is a day to honor and grieve the disabled people whose lives were taken by filicide. As we remember them, we also lean into community and care. The Autistic Self Advocacy Network offers a Disability Day of Mourning vigil locator and an Anti-Filicide Toolkit that can help you find gatherings near you and better understand how to challenge the narratives that devalue disabled lives.
Post newdisabledsouth [Content warning: Discussion of violence against disabled people, including filicide] March 1st is Disability Day of Mourning, a day to remember those in our community who were murdered by family members, caregivers, or loved ones, this is known as filicide. Filicide is deeper than the one-off instances of murder; it unpacks the pattern of violence that starts when a parent or caregiver murders their relative with a disability and continues in how these murders are reported, discussed, justified, excused, and replicated. Today, we hold the collective grief, anger, and pain of all those impacted by filicide. We will never forget those who have been harmed, and we will continue fighting and advocating for justice, accountability, and transformation.
Today is Disability Day of Mourning π―οΈ
Some great slides from
@newdisabledsouth.org about this day:
(featuring the @autisticadvocacy.org )
#disability #disabled #autistic #caregiver #ChronicIllness
π€π»
Damnβ¦ I did notice your account from IG was gone. Thatβs devastating.
You have supported so many of us, me included, on social media. Iβm sure there are plenty of people who will support you if you start over.
I wish there would be a way to get your old one back.
Feeling very blue. After Twitter became X I lost all my audience there. I dedicated time to Instagram, built it back up to over 10k. Now I've been hacked, as a result ALL my following is gone, all my contacts, all my friends, no Threads, Facebook or Instagram. About 500k of views a week.
Awww that is very caring and kind π we all deserve that.
Thanks! βπ»
A black and white photo of Nikoβs mother about to open his bedroomβs blackout curtain. The room is still dark and a single ray of sunshine makes a stripe pattern that lights part of his mother.
Every morning, my mother comes to my room and opens my curtains. I canβt do it myself as Iβm 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS).
During the winter months, the rays of the morning sun reach my room from the other side of the house.
#MECFS #pwME #Photography
screenshot of a Zoom chat between Miles, betsy, Torie, Funmi, and Madeline. Their names are emphasized in starburst shapes. The text reads, βThe Sick Times. Watch now! Expert tips on pitching and writing Long COVID op-eds.β
Help break the stigma around #LongCOVID: share your story by writing an op-ed! To help demystify the process of writing and pitching, we hosted a free webinar with expert guests Torie Bosch, Funmi Okunola, and Madeline Miller.
Watch now, or share with a writer friend! bit.ly/4s1qJxb
Next month, March is #LongCovidAwarenessMonth
Itβs also my birthday.
Can I please get out of this hell? I canβt take much longer.
Anybody got a spare room in #Australia? Iβm #Melbourne but need somewhere safe.
InfoπPlease read.
chuffed.org/project/1619...
#MutualAid
#MutualAidAustralia
ππΈ
The amount of pressure from the right side of ME/CFS is really building in Norway right now.
Thereβs a high-profile case regarding welfare for ME patients, New Guidelines in the work and a lot of people are rallying with what little energy they got.
I smell CHANGE in the atmosphere!!
Promotional graphic for LONGCOVIDADVOC.SHOP featuring a fluffy ginger cat sitting in green grass, reaching one paw up toward large, white, hand-drawn text that reads "FREEPOST" decorated with paw prints. Below the cat, a white box says "All Orders, All Weekend" above three small t-shirt icons on hangers. The website address is displayed at the bottom on a black banner.
π Last FREEPOST before Long Covid Awareness Day
You can get gifts, & advocacy boost tools like stickers, postcards, t-shirts π
ποΈ longcovidadvoc.shop
There's an update on Savannah's gfm. TW so much medical abuse.
Please keep sharing and donating!
By trying to find somewhere less unsafe, she has now lost her NHS provided carers. She's too unwell to do without, so needs to self fund them.
Thank you ππ»
#SaveSavannah #SevereMErgency #ME/CFS
Update:
Feeling unsafe Savannah self-discharged & left QEH in a private ambulance. Even with the CEO of a national charity advocating in person, Guyβs refused to admit her. After waiting over two hours in the ambulance, she was forced to return to QEH.
www.gofundme.com/f/severemerg...
Ahhh that is so shitty π© Iβm so sorry. Itβs the main thing for many to raise funds.
Iβll send you a DM here!
#SaveSavannah #SevereMErgency
#pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy
@ashleydaltonmp.bsky.social
Your words βthese must become never eventsβ
PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS
www.meresearch.org.uk/claims-of-nh...
Yes, I did sent you a DM on Instagram last year!
But in short we have a form on our website for applying to be featured.
Once we agree to feature you, you would need to fill two forms with all the needed information.
Can I DM you here so we can discuss this some more?
We hope you will enjoy our updated gallery!
βA Quiet Storm Teamβ 7/7
Additionally, we are debuting an upcoming group exhibition, βMyalgic Encephalomyelitis Killsβ, on International ME/CFS Awareness Day on May 12th. With open call submissions accepted on our website from March 12th to April 12th! 6/7