Two days late but on #WorldMEDay DHSC announced major funding (£4.75m) to do deep long-read sequencing and rare disease genomics to study mechanisms of #MECFS and #LongCovid, partnering with Edinburgh Uni, @nanoporetech.com , and @ebi.embl.org.
www.gov.uk/government/n...
www.gov.uk/government/n...
Thousands of ME/CFS patients to benefit from first genomics study
People with chronic fatigue syndrome, also known as ME, to benefit from world-first genomics study.
www.gov.uk
May 14, 2026 at 9:06 AM
Two days late but on #WorldMEDay DHSC announced major funding (£4.75m) to do deep long-read sequencing and rare disease genomics to study mechanisms of #MECFS and #LongCovid, partnering with Edinburgh Uni, @nanoporetech.com , and @ebi.embl.org.
www.gov.uk/government/n...
www.gov.uk/government/n...
I didn't have the energy to post about #WorldMEDay yesterday because getting to the #MillionsMissing demonstration took everything out of me. But it was incredibly moving to be able to gather with people in person. As others have said, I feel like I am one of the lucky ones
We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General.
#MillionsMissing #FrailAndFurious #WorldMEday
#MillionsMissing #FrailAndFurious #WorldMEday
May 13, 2026 at 6:02 PM
I didn't have the energy to post about #WorldMEDay yesterday because getting to the #MillionsMissing demonstration took everything out of me. But it was incredibly moving to be able to gather with people in person. As others have said, I feel like I am one of the lucky ones
Oops, I almost forget to make a post for #WorldMEday. For me, #mecfs means living a double life: there’s a version of me who can sometimes go places and do things, and appears vibrant from the outside - but before long she runs out of time, and turns back into a vegetative couch-dwelling creature. 🧵
May 13, 2026 at 4:26 PM
Oops, I almost forget to make a post for #WorldMEday. For me, #mecfs means living a double life: there’s a version of me who can sometimes go places and do things, and appears vibrant from the outside - but before long she runs out of time, and turns back into a vegetative couch-dwelling creature. 🧵
Belated #WorldMEDay post from this sleepy queer. I've been mostly housebound with ME/CFS for 8 years now, and consider myself one of the lucky ones. Here's to more support for people with this devastatingly disabling & underfunded disease.
May 13, 2026 at 2:28 PM
Belated #WorldMEDay post from this sleepy queer. I've been mostly housebound with ME/CFS for 8 years now, and consider myself one of the lucky ones. Here's to more support for people with this devastatingly disabling & underfunded disease.
For ME/CFS AwarenessDay I posted a long thread on Mastodon - here's the link! 😁
disabled.social/@ahimsa_pdx/...
If you prefer an "unrolled" thread here's that link:
mastoreader.io?url=https%3A...
#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay
disabled.social/@ahimsa_pdx/...
If you prefer an "unrolled" thread here's that link:
mastoreader.io?url=https%3A...
#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay
Ahimsa (@ahimsa_pdx@disabled.social)
Attached: 1 image
💙 It's May 12th, International ME/CFS Awareness Day 💙
Also called World M.E. Day!
🧵 This thread talks about 4 things:
1. My ME/CFS story (brief)
2. Facts about ME/CFS and Long C...
disabled.social
May 13, 2026 at 3:00 AM
For ME/CFS AwarenessDay I posted a long thread on Mastodon - here's the link! 😁
disabled.social/@ahimsa_pdx/...
If you prefer an "unrolled" thread here's that link:
mastoreader.io?url=https%3A...
#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay
disabled.social/@ahimsa_pdx/...
If you prefer an "unrolled" thread here's that link:
mastoreader.io?url=https%3A...
#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay
I live with Myalgic Encephalomyelitis (aka “Chronic Fatigue Sydrome”) and a host of related disorders.
We say #MillionsMissing because the conditions are so debilitating that they cause us to have to drop out of our lives.
Sending 💜 on #WorldMEday to all those who suffer. You are not alone.
We say #MillionsMissing because the conditions are so debilitating that they cause us to have to drop out of our lives.
Sending 💜 on #WorldMEday to all those who suffer. You are not alone.
We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General.
#MillionsMissing #FrailAndFurious #WorldMEday
#MillionsMissing #FrailAndFurious #WorldMEday
May 13, 2026 at 1:18 AM
I live with Myalgic Encephalomyelitis (aka “Chronic Fatigue Sydrome”) and a host of related disorders.
We say #MillionsMissing because the conditions are so debilitating that they cause us to have to drop out of our lives.
Sending 💜 on #WorldMEday to all those who suffer. You are not alone.
We say #MillionsMissing because the conditions are so debilitating that they cause us to have to drop out of our lives.
Sending 💜 on #WorldMEday to all those who suffer. You are not alone.
I’m too exhausted to talk about my illness often, but for
#worldMEday I wanted to reshare the comics from the time of year I do talk about it
#worldMEday I wanted to reshare the comics from the time of year I do talk about it
May 12, 2026 at 10:03 PM
I’m too exhausted to talk about my illness often, but for
#worldMEday I wanted to reshare the comics from the time of year I do talk about it
#worldMEday I wanted to reshare the comics from the time of year I do talk about it
I am lucky enough to be able to support myself through part time work but this is through the grace and support of my current employer. It's incredibly difficult to be employed and stay employed if you are chronically ill. #WorldMEDay #MECFS #LongCovid
May 12, 2026 at 9:33 PM
I am lucky enough to be able to support myself through part time work but this is through the grace and support of my current employer. It's incredibly difficult to be employed and stay employed if you are chronically ill. #WorldMEDay #MECFS #LongCovid
I'm celebrating #worldMEday by recieving a letter from the DWP telling me I'm fine actually. Reader, I'm apparently quite good at hiding it, but I'm not fine, actually.
May 12, 2026 at 8:10 PM
I'm celebrating #worldMEday by recieving a letter from the DWP telling me I'm fine actually. Reader, I'm apparently quite good at hiding it, but I'm not fine, actually.
#WorldMEDay - I have had CFS/ME since I was 6 years old. It went down in my files as "CFS-like symptoms" since it was basically unheard of to be so young. didn't get a proper diagnosis until I was 26. I can work about two days a week, which puts me on the mild side of moderate.
May 12, 2026 at 8:02 PM
#WorldMEDay - I have had CFS/ME since I was 6 years old. It went down in my files as "CFS-like symptoms" since it was basically unheard of to be so young. didn't get a proper diagnosis until I was 26. I can work about two days a week, which puts me on the mild side of moderate.
This book, Awakened, was so satisfying to listen to. And it’s a truly stunning achievement besides. #MECFS #MEawareness #WorldMEDay #pwME #booksky
I wasn’t going to post for #WorldMEDay as it often feels like screaming into the void, but i decided i’d talk about my experience with ME and the inspiration for my debut novel, Awakened, which was published in June last year
May 12, 2026 at 7:50 PM
This book, Awakened, was so satisfying to listen to. And it’s a truly stunning achievement besides. #MECFS #MEawareness #WorldMEDay #pwME #booksky
We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General.
#MillionsMissing #FrailAndFurious #WorldMEday
#MillionsMissing #FrailAndFurious #WorldMEday
May 12, 2026 at 7:16 PM
We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General.
#MillionsMissing #FrailAndFurious #WorldMEday
#MillionsMissing #FrailAndFurious #WorldMEday
I wasn’t going to post for #WorldMEDay as it often feels like screaming into the void, but i decided i’d talk about my experience with ME and the inspiration for my debut novel, Awakened, which was published in June last year
May 12, 2026 at 7:02 PM
I wasn’t going to post for #WorldMEDay as it often feels like screaming into the void, but i decided i’d talk about my experience with ME and the inspiration for my debut novel, Awakened, which was published in June last year
I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress.
Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.
Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.
May 12, 2026 at 6:25 PM
I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress.
Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.
Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.
If you’re not affected by ME, I challenge you to look through the hashtags this #MEAwarenessDay & choose one post to share on behalf of the #MillionsMissing. We desperately need healthy allies to get angry for us & advocate for research & social support 💙
#MECFS
#WorldMEDay
#GreatestMEdicalScandal
#MECFS
#WorldMEDay
#GreatestMEdicalScandal
The thing about ME/CFS patients is that it's definitionally difficult for them to advocate for themselves. They just... vanish from society.
Which is why it's up to the rest of us to spread the word. To learn more or donate to research, some good orgs are:
www.omf.ngo
batemanhornecenter.org
Which is why it's up to the rest of us to spread the word. To learn more or donate to research, some good orgs are:
www.omf.ngo
batemanhornecenter.org
May 12, 2026 at 5:33 PM
If you’re not affected by ME, I challenge you to look through the hashtags this #MEAwarenessDay & choose one post to share on behalf of the #MillionsMissing. We desperately need healthy allies to get angry for us & advocate for research & social support 💙
#MECFS
#WorldMEDay
#GreatestMEdicalScandal
#MECFS
#WorldMEDay
#GreatestMEdicalScandal
This week, advocate Rebecca Groble shared information about ME/CFS at the Evanston Public Library in honor of World ME Month. Thank you, Rebecca, and health librarian Irene, for doing your part to educate people about this disease. Visibility matters!
#WorldMEDay #UnitedForME
#WorldMEDay #UnitedForME
May 12, 2026 at 5:01 PM
This week, advocate Rebecca Groble shared information about ME/CFS at the Evanston Public Library in honor of World ME Month. Thank you, Rebecca, and health librarian Irene, for doing your part to educate people about this disease. Visibility matters!
#WorldMEDay #UnitedForME
#WorldMEDay #UnitedForME
to complete it. If you can please donate here:
megenetics.org.uk/donate/
We’ve only got one shot – Prof. Chris Ponting
@cgatist.bsky.social
@decodemestudy.bsky.social
@actionforme.bsky.social
#ME/CFS #Genetics #pwME #LongCOVID #MEAwarenessDay #WorldMEDay
megenetics.org.uk/donate/
We’ve only got one shot – Prof. Chris Ponting
@cgatist.bsky.social
@decodemestudy.bsky.social
@actionforme.bsky.social
#ME/CFS #Genetics #pwME #LongCOVID #MEAwarenessDay #WorldMEDay
Donate - ME Genetics Centre of Excellence
Donate to ME research Your donation will help fund urgently needed research into ME, including work at the ME Genetics […]
megenetics.org.uk
May 12, 2026 at 4:49 PM
to complete it. If you can please donate here:
megenetics.org.uk/donate/
We’ve only got one shot – Prof. Chris Ponting
@cgatist.bsky.social
@decodemestudy.bsky.social
@actionforme.bsky.social
#ME/CFS #Genetics #pwME #LongCOVID #MEAwarenessDay #WorldMEDay
megenetics.org.uk/donate/
We’ve only got one shot – Prof. Chris Ponting
@cgatist.bsky.social
@decodemestudy.bsky.social
@actionforme.bsky.social
#ME/CFS #Genetics #pwME #LongCOVID #MEAwarenessDay #WorldMEDay
The history of medicine is full of damaging attribution to psychological factors of several diseases, the most recent one is Long COVID. Before it ME/CFS has been and still is the most mischaracterized, mistreated, and unscientifically psychologized organic disease.
To mark #WorldMEDay a group of 🇩🇪
To mark #WorldMEDay a group of 🇩🇪
Endlich online! Open Access.
Pünktlich zum ME/CFS Awareness Day unser Text gegen die Psychologisierung von Long COVID und ME/CFS
💐 Danke an
@privilegienschreck.bsky.social @ffhambu.bsky.social @postx.bsky.social
@buechnerronja.bsky.social
www.thieme-connect.com/products/ejo...
Pünktlich zum ME/CFS Awareness Day unser Text gegen die Psychologisierung von Long COVID und ME/CFS
💐 Danke an
@privilegienschreck.bsky.social @ffhambu.bsky.social @postx.bsky.social
@buechnerronja.bsky.social
www.thieme-connect.com/products/ejo...
May 12, 2026 at 4:37 PM
The history of medicine is full of damaging attribution to psychological factors of several diseases, the most recent one is Long COVID. Before it ME/CFS has been and still is the most mischaracterized, mistreated, and unscientifically psychologized organic disease.
To mark #WorldMEDay a group of 🇩🇪
To mark #WorldMEDay a group of 🇩🇪
It's #worldMEday. This year is my 40th Sickiversary of #MECFS. Here's a photo of me in my bedroom in Chelsea, September 1986, right before I got ME. I'm one of the lucky ones, I had long periods of improvement where I looked nearly able-bodied. I had a career. But I'm one of the #millionsmissing.
May 12, 2026 at 4:33 PM
It's #worldMEday. This year is my 40th Sickiversary of #MECFS. Here's a photo of me in my bedroom in Chelsea, September 1986, right before I got ME. I'm one of the lucky ones, I had long periods of improvement where I looked nearly able-bodied. I had a career. But I'm one of the #millionsmissing.
“1990…Anthony Fauci, head of NIAID…has recently pressured an ME ally in Congress to stop advocating for ME patients & trying to ‘micromanage’ NIH” #WorldMEDay #InternationalMEAwarenessDay #MEcfs
May 12, 2026 at 4:17 PM
“1990…Anthony Fauci, head of NIAID…has recently pressured an ME ally in Congress to stop advocating for ME patients & trying to ‘micromanage’ NIH” #WorldMEDay #InternationalMEAwarenessDay #MEcfs
“They rename it ‘chronic fatigue syndrome’ to downplay its seriousness & they mock the hundreds of severely ill patients who are calling the CDC begging for help…” #WorldMEDay #MEcfs #InternationalMEAwarenessDay
May 12, 2026 at 4:15 PM
“They rename it ‘chronic fatigue syndrome’ to downplay its seriousness & they mock the hundreds of severely ill patients who are calling the CDC begging for help…” #WorldMEDay #MEcfs #InternationalMEAwarenessDay
🟠 On #WorldMEDay, I’m proud to stand with Action for ME as a parliamentary champion for people living with the condition. It is estimated that around 1.3 million people in the UK are living with ME or ME-like symptoms, which can often be associated with Long Covid.
May 12, 2026 at 4:00 PM
🟠 On #WorldMEDay, I’m proud to stand with Action for ME as a parliamentary champion for people living with the condition. It is estimated that around 1.3 million people in the UK are living with ME or ME-like symptoms, which can often be associated with Long Covid.
It's #WorldMEDay Only ME/CFS suffers know the cruelty inflicted on us by medicine, by our loved ones, by society. Told "it's all in your head" just "be happy" "everyone get's tired" or the perennial "have you tried yoga?" It was never our fault. It was Val/Val rs5522 causing "cortisol steal."
Spironolactone for ME/CFS in a Patient Homozygous for rs5522 (I180V): A Case Report
Abstract Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition with no consistently effective treatment. The mineralocorticoid receptor variant rs5522 (...
zenodo.org
May 12, 2026 at 3:41 PM
It's #WorldMEDay Only ME/CFS suffers know the cruelty inflicted on us by medicine, by our loved ones, by society. Told "it's all in your head" just "be happy" "everyone get's tired" or the perennial "have you tried yoga?" It was never our fault. It was Val/Val rs5522 causing "cortisol steal."
It’s #WorldMEday: share as many of our stories possible while we’re still alive.
Our community loses too many #pwME every day, yet we’re ignored by medical research funders &the public bc most of us are trapped in dark rooms 💔
linktr.ee/EthyricalArt...
#MEawarenessDay #GlobalMEday #MillionsMissing
Our community loses too many #pwME every day, yet we’re ignored by medical research funders &the public bc most of us are trapped in dark rooms 💔
linktr.ee/EthyricalArt...
#MEawarenessDay #GlobalMEday #MillionsMissing
May 12, 2026 at 3:33 PM
It’s #WorldMEday: share as many of our stories possible while we’re still alive.
Our community loses too many #pwME every day, yet we’re ignored by medical research funders &the public bc most of us are trapped in dark rooms 💔
linktr.ee/EthyricalArt...
#MEawarenessDay #GlobalMEday #MillionsMissing
Our community loses too many #pwME every day, yet we’re ignored by medical research funders &the public bc most of us are trapped in dark rooms 💔
linktr.ee/EthyricalArt...
#MEawarenessDay #GlobalMEday #MillionsMissing