2025_5_7 Atypical behind-eyeballs pain?

https://www.illmarks.com/2025_5_7-atypical-behind-eyeballs-pain/

#bodyHorror #chronicIllness #eyeballs #longCovid #medicalArt #MillionsMissing #pwLC #pwme #skeleton #skull

I tried meeting up with a friend!!! After I slept so much. Upon waking, I had gotten a sore throat. Is this trading my voice to walk like a social human?

https://www.illmarks.com/i-tried-meeting-up-with-a-friend-and/

#art #bodyHorror #chronicIllness #longcovid #MerMay #mermaid #mermay #MillionsMissing #pwLC #pwme

2025_5_6 Eternal Suffering of the Mast Cell

https://www.illmarks.com/2025_5_6-eternal-suffering-of-the-mast-cell/

#art #autoimmune #bodyHorror #chronicIllness #longCovid #mastCell #mastCellActivationSyndrome #mastcell #mcas #MillionsMissing #pwLC #pwme

2025_5_5 Post-viral dysarray and gender dysporia

https://www.illmarks.com/2025_5_5-post-viral-dysarray-and-gender-dysporia/

#art #bodyHorror #chronicIllness #dysphoria #illustration #longcovid #MillionsMissing #pwLC #pwme #trans #transPride

Last week, PLRC members Gina and Michael participated in the #MEAction #MillionsMissing protest, calling on officials to safeguard essential supports like Medicaid, home care, research funding, and open science.

These systems—already fragile for many in our communities—are now at serious risk of collapse.

Visit @meaction.net for more information.

Naja, das war für mich extrem befremdlich.

Auf einem extrem heissen und hellen Platz fast ohne Schattenstellen war ich die einzige Person, die eine Maske getragen hat. Und die Leute standen eng beisammen!?

WTF?!

#MECFSAwarenessDay #Bern #MECFS #LongCOVID #MillionsMissing

Email update from #MEAction

"Millions Missing 2025: SOS - The Signal Was Sent!"

https://mailchi.mp/meaction/millionsmissing-2025-our-common-fight-is-what-matters-3574417

Lots more photos and videos - from the protest in DC, from folks who posted from home, and from other countries.

Also includes updates on meetings with congress, more signatures on the #MEAction letter to NIH, the fight to save Medicaid from budget cuts, and more.

@mecfs

#MEcfs #LongCovid #MillionsMissing #Medicaid #SaveMedicaid #DisabilitySOS

💙 Blue Sunday - 2025 💙

https://the-slow-lane.com/blue-sunday-2025/

On Sunday, May 18, join this fundraiser for ME/CFS charities.

Suggestions:

* Wear something blue and have a virtual tea party.

* Post photos on social media.

* Donate the price you'd pay if you went to a cafe to your favorite ME/CFS charity.

* Connect with others online who are doing the same! 😊

Other suggestions in attached image (with alt text).

#MEcfs #PwME #BlueSunday #Fundraiser #Charity #MillionsMissing

People are afraid of disability and chronic illness.

Ableism, combined with capitalism, has conditioned us to see value as directly tied to economic productivity.

If someone thinks about disability, it goes like this:

“I won’t ever become disabled because I’m healthy”

“If I do become disabled I will be the exception who gets cured”

“If medicine can’t cure me I will cure myself, I will try harder”

“Those disabled people just don’t want to get better”

they won’t understand until it happens to them, at which point many will say:

“I had no idea it was this bad!”

You know what they almost never say?

“I’m sorry”

#disability #chronicillness #worldMEday #millionsmissing #ableism #eugenics

If you’ve wondered why I’ve been so quiet, well, I don’t have the energy to do much besides survive. I have ME. I’ll need to lie down to recharge my battery for half an hour after creating this post. Not looking for sympathy, but I wanted you to know.

#MEAwarenessDay
#MillionsMissing

PS. If you want to make a donation to an ME/CFS group (only if you can afford it!) then here are some links:

#MEAction
https://www.meactions.org/millionsmissing-2025-sos-fundraiser

Solve M.E.
https://solvecfs.org/donate

Bateman Horne Center
https://batemanhornecenter.org/donate/

Open Medicine Foundation
https://www.omf.ngo/

#MEcfs #MillionsMissing #WorldMEDay #MEAwarenessDay #Charity

Today's top ten tag trends:

10: #PhotoMonday
9: #Fotomontag
8: #millionsmissing
7: #webcomicday
6: #altmotherasongorpoem
5: #pkk
4: #starmer
3: #FotoVorschlag
2: #toxiv_bot_toot
1: #monsterdon

#trendytoots 📈

@illmarks

Thanks for your post!

And I love your illmarks series!

For those who don't know about it a selection of these illmarks are being displayed in an art show at Artworks Center for Contemporary Art that's called "And Still It Remains: A Long Covid Exhibition"

https://www.artworksloveland.org/events/opening-reception-may-9th-6-9pm

The link has photos and artists' statements.

#Art #LongCovid #MEcfs #ChronicIllness #MillionsMissing #PwME #PwLC

Today is M.E. awareness day.

I was diagnosed with M.E. and P.O.T.S. in 2020. Prior to my diagnosis I was a seagoing worker in the arctic, an avid backcountry hiker and a busy musician in spite of both severe PTSD and fibromyalgia.

The summer of 2019 I got sick while working up north. It progressed to a terrible lung/strep infection. I was treated four times following that for walking pneumonia and became sick with another lung infection in late 2019 after travelling in Vietnam.

I kept trying to push through my exhaustion, returning to sea in spite of my symptoms. We live in a society that believes your value is directly tied to your work and productivity. It's a cruel and ableist lens to view human worth that way.

My body has never fully recovered. M.E. has been a rollercoaster of ups and downs and I feel like I've missed out on so much in the last five years of my life. I have tried to go back to some sort of career several times since then only to find myself in worse shape. These last few months of deep rest are the first time I've managed to find some balance with my illness. Sometimes I use a cane. Sometimes I don't. My mobility shifts like the wind. Please know that you aren't alone and many people with long covid may also be experiencing M.E.

It's easy to miss our existence. We just aren't there anymore, and it shouldn't have to stay this way.

#millionsMissing #meAction #meAwarenessDay #longCovid

No more preventable infections. We’ve had enough and deserve better.

Today is the International ME/CFS Awareness Day. I am one of the #MillionsMissing, and this year I hope we can gain more active allies and call attention to this year’s SOS:

• Save our Support Systems:
  • Millions of us rely on disability and public health support systems, or like me, are waiting for approval to access to have that aid.
• Save our Society
  • Millions of us know that when catastrophes happen, many disabled people often can’t get aid, or are forgotten about.
  • We are “canaries in the coal mine,” more sensitive or vulnerable to many threats which could grow to impact abled people, unless actions are taken.
  • Society would be greatly benefited by heeding our warnings because access helps everyone.
• Save our Science
  • This one is the hardest for me emotionally:
  • The strongest likelihood I have for improvement is from scientific research, clinical trials, and FDA approvals.
  • I’ve tenaciously fought the last few years to get any stability, understanding, and quality of life, but I am close to having exhausted my options. I know so many people who have done everything they can, and are waiting on scientific research to let them leave their homes, let alone beds.
  • When we threaten science, we threaten the tiny bit of hope I (we) have for in our lifetime, effective treatments, let alone *whispers* a cure.
  • I am brave but this hope is fragile. I think of those who got sick before me, and have been sick for decades & their hope. I think of sick people in smaller countries who are watching US research and their hope. I think about those of us whose hopes (deeply understandably) weren’t enough to help them.

Please try to advocate how you are able, especially folks in countries with tyrannical governments who are once again flirting with eugenics. We can learn from history, and we can build better societies.

Anyways, on to the bookmark: Having ME/CFS is so horrible, it often defies words. I think that is a large part of why I have stuck with this project (on top of the meaningful social interactions).

ME/CFS is a post-acute infection syndrome, meaning the only way to not get it is to not be infected. Vaccination helps for those who are able, but even being fully vaccinated and boosted (hi) you can still get sick. I have post-acute infection information in many formats on the blog’s about page.

I want precious few things more than for no one else to get sick with post-acute infection conditions including ME/CFS. It is crushing to see that the knowledge which would help others not fall potentially permanently ill are being silenced and dismissed. But I still have hope for us to learn, be the tool-using species we are, and protect our precious lives. That’s the theme of this bookmark. Blocking the door with hope.

I have to go nap now before my symptoms (right now: skin reaction, muscle aches, and poor bloodflow) multiply and get worse just from drawing this and writing this. That’s my ME/CFS.

https://www.illmarks.com/no-more-preventable-infections/

#chronicIllness #health #hopepunk #MillionsMissing #milllionsmissing2025 #Pandemic #pwLC #pwme

Okay, I think that's it! If you've made it all the way to the end of my thread, thanks so much for reading! 😁

I may be done posting but I'll continue to look for and boost other posts about World ME Day / ME Awareness Day / Millions Missing.

I'll end with a story by The Sick Times about the #MEAction Millions Missing protest at the capitol:

https://thesicktimes.org/2025/05/12/millions-missing-protest-at-the-capitol-demands-myalgic-encephalomyelitis-funding-social-support/

16/16

@mecfs @longcovid
@disability

#MEcfs #LongCovid #MillionsMissing #DisabilitySOS #MEAwarenessDay #WorldMEDay

I thought I had a longer list of actions!

The only other one I can find now is this, a call by #MEAction to sign their open letter to the NIH demanding they fund ME/CFS Resesarch Roadmap:

https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form

15/n

@mecfs @longcovid

#USpol #MEcfs #LongCovid #MillionsMissing #NIH #Research #FundMERoadmap

I'm about to end this long thread with calls to action (all US based)

Many go far beyond helping ME/CFS and Long Covid patients. Disabled folks have to stick together!

#MEAction has a page on saving Medicaid. Tasks are listed by energy (low to high) with sample scripts for email / phone calls to your congress member. There are tips on how to schedule an in-person visit

https://www.meactions.org/medicaid

14/n

@mecfs @longcovid

#USPol #Advocacy #Medicaid #SaveMedicaid #MEAwarenessDay #MillionsMissing

Want to discuss the science of ME/CFS with patients, doctors, researchers, or anyone else who's interested?

There's a moderated forum called Science for ME:

https://www.s4me.info/

Full disclosure, I'm a forum member and volunteer (but not a moderator - too hard for me!)

In addition to the more serious parts of the forum there are also subforums where patients can chat about stilly stuff 🤪

13/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #MillionsMissing #MEAwarenessDay #Science4ME

Next up is Open Medicine Foundation, a group that does research to

"diagnose, treat, and prevent chronic, complex diseases such as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Post-COVID Syndrome, Post-Treatment Lyme Disease Syndrome (PTLDS), and Fibromyalgia"

Main website:

https://www.omf.ngo/

Here's their resources page:

https://www.omf.ngo/resource-center/

12/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay #OMF