The Beginning Comes After The End
Don’t miss @rebeccasolnit.bsky.social in conversation with @billmckibben.bsky.social, hosted by @thirdactorg.bsky.social
Tuesday, March 10 at 7:00 pm ET
RSVP to attend:
Graphic is a screenshot of an Instagram post that reads "Can't eat. Can't drink. Very severe ME. Keeps leading to infection. If we don't raise funs. I'm done for. It's goodbye from this Pakistani pwME. I have no words. All we know is that I have a compression. We need fun.ds ASAP in the next one day."
🚨 Nevra's situation is urgent. She can't afford both rent and hospital bills. 🚨
Please donate if you can, and share this post to spread the word.
PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra
#pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs
‼️Nevra Hospital Update. Urgent Funds Needed ‼️
Nevra has very Severe ME and can no longer eat or drink. She has an infection that has travelled upwards. She needs 3 IV antibiotics for 5 days, keeping her in hospital longer. Scans revealed a fecal obstruction & a compression in the celiac artery.
Screenshot from Nevra's instagram reads "🚨 £400 match funding alert!🚨 All donations this month will be DOUBLED until £400 is reached. £10 becomes £20. £25 becomes £50. Let's unlock the full £800 together!"
🚨 £400 match funding alert!🚨
All donations this month will be DOUBLED until £400 is reached. £10 becomes £20. £25 becomes £50. Let's unlock the full £800 together!
Donate/share: paypal.me/SaveLizNevra & gofundme.com/f/save-nevra
#VerySevereME #pain #food #water #pwME #MillionsMissing #MECFS
Screenshot of a post from Nevra's Instagram. It's a photo of Nevra in a hospital bed. She's wearing a mask and a hospital gown and she has an IV in her arm.
Please don't stop boosting my recent posts
#SevereME #pwME #food #pain #water
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.
Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
Photo of Sebastian wearing headphones around his neck and making music from bed. Behind him are two signs: the sign on the left reads, "Tried 30 meds, none worked. #curemecfs," and the sign on the right reads, "Not tired. Sick. #curemecfs."
From his bed, Sebastian creates Drum & Bass 🎶
Two years ago, he was active, sporty, and highly driven. Today, he is around 90% bedbound. He works on music when he can & his work has reached over 1.5 million streams on Spotify. Read Sebastian's story👉 https://ow.ly/n2KZ50YpIqX.
Promotional graphic for a “Parliamentary Friends of ME/CFS Meeting” with hashtag #FairGoForME. Photo shows a person typing on a laptop while seated on a couch. A green banner reads “Parliamentary Friends of ME/CFS – Email your MP.” Logos along the bottom include Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and Myalgic Encephalomyelitis Group Australia.
📢 #MECFS needs political attention - and MPs need to hear from us. Email your MP (2 mins!) and urge them to attend the Parliamentary Friends of ME/CFS meeting on 10 March.
Take action 👉 zurl.co/NfBan
Let’s fill the room. 💙
#FairGoForME #MECFSAllianceAustralia
Blue background with big data concept: motion of digital data flow. The text reads: Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For?
In 2025, OMF launched a large-scale #MECFS biomarker project called BioQuest. Cort Johnson’s article explores the study and includes insights from Dr. Danielle Meadows, OMF’s Vice President of Research Programs & Operations.
🔗 Read the article here: https://ow.ly/zgGn50YocTW
I’ve been seeing white people and people who speak English as a first language asking if dysautonomias and MECFS only appear in white populations, which is nonsense
Engage with HIV/AIDS, long Ebola, long Dengue research for 10 minutes
Recall Long Covid is a global problem
“I don’t see how that’s supposed to work when this is a public health problem,” I said.
“Well, we’re not going back.” Boss was smiling. So goddamn smug and happy.
“Yep! Even if it kills people,” I said.
You should have seen how the light went out in my boss’s eyes. (2/3)
🧵One thing I’ll always remember from when mask mandates were dropped is how gleefully my colleagues at the time rushed back to normal.
I begged them to consider what it meant for high risk folks like me.
“Everyone has to take personal responsibility,” said my boss. (1/3)
Graphic with a dark blue background and pink and cyan accents titled "PROGRESS WORTH CELEBRATING." Large pink text reads "GOOD NEWS: Major breakthrough for ME/CFS research" with a party popper emoji. The main text announces that DISCOVER-ME, co-led by Prof Carding, has received €7.5 million in EU funding. It involves 21 international partners studying 2,000 patients to deliver biologically validated disease classification, actionable biomarkers, AI-driven stratification, and foundations for precision trials and drug repurposing in ME/CFS. The Long Covid Advocacy logo is at the bottom right.
Some good news!
We do (🤞) seem to be at a turning point of decent research being funded for #ME
See S4ME forum post for more details:
🖇️ tinyurl.com/msbft7e6
300 million people globally live with a rare disease, highlighted for Rare Disease Day on February 28, 2026. Simple graphic with blue background and rare disease day logo #RareDiseaseDay and rarediseaseday.org are listed at the bottom.
We are sharing in support of #RareDiseaseDay! Myalgic encephalomyelitis (aka ME/CFS) is NOT a rare disease but we understand many of the struggles faced by those with rare disease. Some of us also have co-morbidities that are rare. You can learn more at rarediseaseday.org.
Solve M.E. webinar announcement for April 28 on discovering target antigens for dysfunctional T cells in ME/CFS and Long COVID with four expert speakers.
📢 New webinar! Dr. Liisa Selin, Dr. Ayano Kohlgruber, & Dr. Roshan Kumar will discuss "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS and #LongCOVID."
WHEN: Tuesday, April 28 @ 3:00 pm PT / 6:00 pm ET.
Register here:
https://ow.ly/VnlJ50YmLTQ
After almost 4 years with Long Covid/MECFS that only things that have helped dampen some symptoms are:
IV Saline
Blood loss
Valtrex
Antihistamine
Cold therapy
Low histamine diet
MAYBE vitamin D shot?
1000s and 1000s of dollars later. That’s it. Don’t get covid.
This comic slide from “why you should wear a mask 2026” by Gillian Levine playfully educates readers about Long COVID by presenting it in a colorful music festival poster format. It reads “the 7th annual Long COVID fest 2026: February 2020-???: a SARS-CoV-2 production.” The poster features rainbows, skulls, and palm trees and is giving “Coachella” vibes. Below, where artists would be announced are facts about the disease including its symptoms and prevalence. “Brought to you by late stage capitalism, airline CEOs, and corporate landlords” is at the bottom of the poster.
So many great slides in the comic, but this "Long COVID Fest" parodying festival posters was such a brilliant way to communicate about Long COVID.
"Brought to you by SARS-CoV-2" and sponsored by "late-state capitalism, airline CEOs, and corporate landlords"
"Ignoring the problem doesn't make it go away...if you truly care about other people, you'll put [a mask] on."
We republished illustrator Gillian Levine's comic, "Reasons to mask in 2026" in @thesicktimes.org. Check it out 👀😷
thesicktimes.org/2026/02/27/c...
Speakers include Christopher Armstrong, Chris Ponting @cgatist.bsky.social , Oystein Fluge, David Putrino @putrinolab.bsky.social , Carmen Scheibenbogen @scheibenbogen.bsky.social , and many other ME/CFS experts.
#MEcfs #LongCovid
artist's impression of life: with 5 sections: before ME; mild ME; moderate ME; severe ME; very severe ME
M.E.: "How it can shrink one's world, bit by bit" by Kornelia Paulsen (who no longer appears to be on X or IG).
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SevereME
Q&A series on ME/CFS and Long COVID featuring Dr. Hector Bonilla, clinical professor and co-director at Stanford clinics.
“We have much more technology available now than we did years ago - proteomics, metabolomics, genomic analysis, immune profiling. We may not yet have ideal biomarkers, but we are finding objective, biological changes.” - Dr. Hector Bonilla
Watch our interview here:
https://ow.ly/3gYA50YksmX
"don’t criticise the psychologisation of ME because I feel stigmatised by mental illness; I criticise it because it doesn’t fit the facts"
"the lack of even the will to understand it among people whose job it is to do so is more traumatic and it is culpable"
1/2
"The problem... [is not] how much you can do in the first place. The problem is how much you can recover from"
⬆️ 💯 This ♥️🙏
#pwME #pwLC #pwvsME
For non-Substackers it's also on our website:
www.longcovidadvoc.com/post/psychol...
Graphic with a dark, moody photograph of a red fly agaric mushroom with white spots growing in a mossy forest. The background consists of blurred, dark tree trunks. White serif text over the image reads: "Psychologisation 101: Definitions, Distinctions, and Why It Matters." At the bottom, in a smaller italicized font, it says "Long Covid Advocacy" next to a small bookmark-style logo.
🌟The first in our new 101 back to basics series.
In this article we look at Psychologisation.
If there's a topic you'd like us to cover please let us know in the comments!
🎧 Audio available
🖇️ tinyurl.com/52vthd5b
The book Invisible Illness has caused a bit of a stir among many patients. Here are some further thoughts on the controversy.
virology.ws/2026/02/16/t...
Yo, #NEISvoid? Anyone with #MECFS or related conditions notice any unusual fx from meloxicam?
(Now I have moderate ME with #LongCovid additions & exacerbations and really wish #GreatestMEdicalScandal gets more coverage (!) and that researchers at @openmedf.bsky.social @polybiorf.bsky.social @mecfsresearch.bsky.social get more funding so these illnesses stop causing endless grief & suffering)
and there were a lot of great people to chat with!) But the boom & bust caught up with me & I had to also stop my little yet financially essential freelance work from home.
And I’m wondering how many people with #LongCovid with mild ME now (& able to go to Tulum) will be where I am in 10 years 😮💨
(Now I have moderate ME with #LongCovid additions & exacerbations and really wish #GreatestMEdicalScandal gets more coverage (!) and that researchers at @openmedf.bsky.social @polybiorf.bsky.social @mecfsresearch.bsky.social get more funding so these illnesses stop causing endless grief & suffering)
