María Richardson

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

Psychologisation 101 Definitions, Distinctions, and Why It Matters

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)

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 😮‍💨

after going to a writer’s workshop at another beautiful & healing-reputed Mexican location - Tepoztlán- where I thought I was pacing (participated in 10% of the activities beyond the workshops, but did socialize more than at home because I was in summercamp mode (I’d missed being social!) …

just made me feel worse, yoga classes included, or why preparing elaborate salads was so taxing (so much standing up & chopping etc!) or why my unrefreshening sleep didnt improve etc…

Then, 4 years ago, I had been writing about this in a memoir I had to stop because my baseline decreased…

Realizing this part is especially egregious to me because I’m Mexican and 15 years ago I had very mild and undiagnosed yet very limiting ME and moved to Puerto Vallarta and did all the ‘wellness’ things and even considered yoga teacher training and couldnt figure out why aerobic & strength training…

In-depth article from Cournoyer examining Invisible Illness by Emily Mendenhall.

It's an astute critique that makes clear that whilst the author tried to take a disability justice stance it ultimately failed because it didn't hold to crucial systemic disability justice issues like masking 👇

A graphic displays the 5th century BCE marble relief art “Ascelpius or Hippocrates treating and ill woman”. In the scene, a man touches the shoulder of a woman lying down as four other people stand by and watch. The text reads, “The Sick Times. “Invisible Illness” could have been transgressive. Instead, it minimizes Long COVID. The book fails to convey the severity of infection-associated chronic conditions, demands for treatment, or importance of infection prevention. By Shielding Cournoyer.”

While certain factors increase risks, infections disable the able-bodied, too. Denying that fact means placing public health failures on the bodies of disabled people. Public health is off the hook if the problem is never one infection, but always, instead, “You’re kind of a hot mess.”

Emily Mendenhall’s new book, Invisible Illness — which promises a history of poorly understood chronic conditions — fails to convey the severity of infection-associated chronic conditions, demands for treatment, or importance of infection prevention. bit.ly/3MO4BGZ

These artists are making concerts safer with COVID-19 precautions - The Sick Times While most of the music industry has moved on, COVID-conscious performers have been working to prevent their shows from being superspreaders.

For @thesicktimes.org, I looked at the state of COVID safety in live music and how artists and event producers can still protect themselves and audiences thesicktimes.org/2026/02/17/t...

Disabled people & those who cannot afford to get Covid deserve to be able to see art in public and make art in public.

The artist and producer yuniVERSE, a young Indonesian-Australian woman, performs on a stage with large flowers. She lies on stage equipment and wears a white, high quality mask decorated with beautiful and original metal swirls. She wears a black tank top, a black fishnet top, a skirt, and a large bedazzled belt. She presses the microphone to her mask. The text reads, “The Sick Times. These artists are making concerts safer with COVID-19 precautions. By Katie Chow."

I think ultimately we’re a subculture, but instead of being centered around a style of clothing or music, we’re centered on anti-ableism, and it makes our commitment more powerful. — Camille Mai, Rebirth Canal

While most of the music industry has “moved on,” COVID-conscious performers have been working to prevent their shows from being superspreaders. Read more from @katiechow.bsky.social: bit.ly/3ZIW4YQ

Not quite the same but I’ve been thinking about how so many of us do audio, radio, DJ, performance work in respirators. I’m live on the radio for 2-3 hour shifts plus prep work, masked the whole time. No one can tell who’s masking on a radio or podcast mic, but we’re out there!

A professional portrait of Dr. Armstrong in an office setting, alongside text announcing nearly $1M awarded to the OMF Melbourne ME/CFS Collaboration.

Dr. Christopher Armstrong and his team at OMF's Melbourne ME/CFS Collaboration have been awarded nearly $1 million through the Australian government’s Medical Research Future Fund (MRFF) for the project Energy inefficiency in #LongCOVID and #MECFS.

👉 Learn more: https://ow.ly/hj9F50Yh6TY

International ME/CFS Conference 2026: Registration for the online livestream is now open.

7-8 May, 2026. Latest research on #mecfs and #LongCOVID from leading international experts.

Register now: https://t.ly/Ow2Co

UK #ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare funding “For over a year now I’ve been struggling to secure NHS Continuing Healthcare (CHC) funding for my husband James. It’s been a gruelling process, emblematic of the many challenges people with ME face accessing support and ultimately getting the condition taken seriously by the NHS. Today I’m sharing our story, and why I think this is an issue that deserves decision-makers’ attention.”

(UK)
@thereforme.bsky.social co-founder @karenlhargrave.bsky.social writes about applying for Continuing Healthcare funding

www.thereforme.uk/p/why-is-con...

Screenshot from latest Science for ME weekly update

#SevereME #SevereMECFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis

Screenshot of an Instagram story from @ quella_the_dizzy_octopus that reads "We are beyond an emergency situation regarding Nevra's well being. Nevra is extremely low on funds and may be forced to return to a DV setting that WILL worsen here very severe ME/CFS significantly. This is extremely dangerous to her wellbeing and something that is causing her significant distress. On top of this issue, she is suffering significantly due to running out of antibiotics and estrogen cream to prevent UTI. She currently has a UTI with fever. And it is causing her other conditions to flare dangerously. Please donate and share!"

🚨‼️ We are beyond an emergency situation regarding Nevra's well being‼️🚨

Nevra currently has a UTI with fever which is causing her other conditions to flare dangerously. Please donate and share!

PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra

#pwME #MECFS #SaveLizNevra

Had this same thought and hope today! @georgemonbiot.bsky.social 🙏🏻 #GreatestMEdicalScandal

@georgemonbiot.bsky.social please will you write about #pwME again? Savannah needs your help urgently 🙏🏻

#VerySevereME #MECFS

"Refusing" is such an incredibly loaded word in hospital contexts. #SaveSavannah #SevereME

www.gofundme.com/f/severemerg...