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#MEAction

@meactnet

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#MEAction an international network of ppl empowering each other to fight for health equity for myalgic encephalomyelitis (ME) #MillionsMissing

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Judgment has done a number on our neighbors and our families when not one person’s experience with COVID was the same.

The distraction was to capitalize on your fear and the lack of knowledge.

The truth comes out in the end. And the reckoning is when communities and families come back together to unite in the fight for connection.

There’s no time left to waste.

Join me as we PACE to the Capitol. It’s not a RACE because we can’t run, but it’s a PACE because we can. COVID and LONGCOVID was always REAL. #covidrecoverymama #longcovid #millionsmissing

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Get ready with me for infusion day. 💉❤️

The preparation starts before Tuesday’s infusion. Thursday is medication delivery day—unpacking, getting it into the refrigerator, organizing supplies, and sometimes having a good cry. There’s a lot that comes with depending on treatment to function.

I bought an organizer for my nurse so she wouldn’t have to dig through a bag for everything. IV tubing, IV supplies, medication, and documentation each have their own place. A small way to make her day easier and help her feel at home while she takes care of me. I’m so thankful for her. ❤️

I wouldn’t be where I am today without my nurse, MEAction, the NIH, and Dr. Nancy Klimas. Their care, research, and advocacy have helped me keep going.

This is why we PACE to the Capitol: because people living with Long COVID and ME/CFS deserve better treatments, more research funding, and greater awareness. Too many are still waiting for the support that could change their lives.

Please like, comment, and share. Help us make the lives—and needs—of people with Long COVID and ME/CFS impossible to overlook. Our lives are worth the investment.

#LongCOVID #MECFS #covidrecoverymama #IVIG #MEAction

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Less than 2 weeks away from the Midterm Elections.

CoRy the Cat here to lay it all on the line.

This year's Elections are the most important thing we have to do as part of our civic duty.

And if we still want a democratic government working for us and not trying to work against us, we have to VOTE!

#MEAction #votingrights #getoutthevote #pwME #Disabilityvotingrights

VideoDescription: An animated PNG Cat wearing a bowler and moustache discusses recent events that underline the importance of voting in the 2026 midterm elections and how to register/check your registration at vote.org.

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MEAction 🛌
Pace to the Capitol 🏛

📢📢📢
Support health equity for ME and LC!
♡ Link in my Bio to Donate ♡

Please support my work as a chronic illness and disability advocate at #MEAction. The activism and community building this organization offers is an important lifeline for me, as well as people with ME, Long COVID, and other disabling chronic illnesses around the world. In the US, we are making major strides in medical education, research funding, public policy and culture change, and, my current area, access to healthcare and support through lifesaving programs like Medicaid.

Without this community, I would have been up a creek without a paddle for the past 10 years. Now, we have seats at the table in Congress, at the NIH, with the US Surgeon General, and with public health leaders across many states.

We also have 11 active volunteer-led state and regional chapters, which provide home-based support and community for many people affected by these poorly understood diseases.

Our community builds every year. But to keep doing this, we need financial support. We need support to fuel our work at the national and state levels, to keep building the capacity of volunteer advocate leaders, to develop resources and support our community needs to survive, and to grow the power of our community's grassroots work.

Please donate this season! It would mean the world to me.

HOW YOU CAN HELP♡♡♡

Your generous donation directly funds life-sustaining projects around the world.

Your donation funds research, re-nourishment, and advocacy programs for ecosystems around the world.

Thank you! 💕

Myalgic Encephalomyelitis Action Network Inc
501(c)(3) Nonprofit Organization
# 47-4011296
https://www.meaction.net/
1217 Wilshire Blvd., Unit 3639
Santa Monica California 90403
United States
Nonprofit fundraising by Funraise
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.
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#ME #LongCovid #MillionsMissing #PaceToTheCapitol 🛌🏛📢📢📢

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M.E. affects hundreds of thousands of people in the UK, but prevalence alone does not reveal the full scale of its impact.

An estimated 410,000 people in the UK have ME/CFS. That places it on a broadly similar scale to rheumatoid arthritis and type 1 diabetes, and well above conditions including Parkinson’s disease, multiple sclerosis and HIV.

Yet the burden of M.E. is greater still.

CrunchME estimates that ME/CFS causes around 258,000 disability-adjusted life years, or healthy years of life, to be lost each year in the UK.

This places its estimated disease burden above Parkinson’s disease, rheumatoid arthritis, multiple sclerosis, MND, IBD, type 1 diabetes and HIV.

This distinction matters: prevalence tells us how many people are affected, whilst disease burden also reflects the severity of illness, disability and lives cut short.

The figures are estimates drawn from different sources, years and methodologies, so they should be understood as comparisons of approximate scale rather than exact like-for-like measurements.

Even with that caution, the message is clear: M.E. is both common and profoundly disabling. Its research funding, healthcare provision and political priority should reflect that reality.

Please save and share this post to help more people understand the true scale of M.E. in the UK.

If you would like to join the monthly giving movement for biomedical M.E. research, here are some charities CrunchME warmly recommends:

🇺🇸 Open Medicine Foundation (@openmedf)
🇬🇧 ME Research UK (@meresearchuk)
🇪🇺 WE&ME Foundation (@weandmecfs)

#MEAwareness #MECFS #MyalgicEncephalomyelitis #PwME #MillionsMissing #ChronicIllness #Disability #Spoonie

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That really got out of hand fast

The spectrum of severity in ME (Myalgic Encephalomyelitis) is vast. And the descent can be rapid and unpredictable. We’re all just one exertion away from losing baseline.

There is certainly a case to be made to get rid of terms “mild to severe” in severity scores for ME, because compared to other illness it’s all severe. There’s also legitimate criticism of representation especially within severe on a certain scale.

FUNCAP is a better representation imo.

The generally understood terms for ME Severity (Nice, MEA etc)

Mild- May be able to work/go to school but limited extracurricular

Moderate-mostly housebound, restricted daily activities

Severe- mostly bedbound, may use wheelchair. Minimal daily tasks

Very Severe- Bedbound and dependent on care

Post Exertional Malaise PEM MECFS Long Covid SevereME

Video description: scene from anchorman -70s(?) era Will Ferris sitting at a desk with a bottle tapping on desk “that escalated quickly” other men “that really got out of hand fast”

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It shouldn’t take an Olympian speaking up for the world to care, but it does. 🩵

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🎱 years in to being mostly housebound and often bed-bound I have tried (& keep trying!) to get better ❤️‍🩹

But nothing so far has been more effective at keeping me safe than pacing…

STOP ✋

REST

PACE

@meactnet

🙏

#meawareness #chronicillnessawareness

Link 🔗 in bio from 2020

Mitochondria blood 🩸 tests via @academyofnutritionalmedicine with @arminlabs

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Anna's story and Ch.uffed L1NK in bio ❤️‍🩹
Mention Australian authorities and NDIS.

@ndis_australia Anna Halcionandon needs help. She lives with severe ME in an abusive household. All she hears from the system is silence.
You can change it.

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I'll be reading H.G. Wells, The Invisible Man w/ live scoring, a new outfit, and so much more!

Oct. 30th, 7pm PST

https://twitch.tv/corywysz

#twitchaffìliate #chronicillnessiswar #pwme #reading #pwME

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Halloween is on a Saturday, but if you are too old to trick-out on some treats, or do not have the spoons to par-tay in person... here is an All Hallows Eve alternative.

I will be doing a dramatic reading of H. G. Wells, The Invisible Man, on my twitch channel. What makes it dramatic? Well, you will have to come by to find out. Mwhaahha ha! Now, that is a tease.

October 30th, 7 P.M. PST
twitch.tv/corywysz

I.D. - A flyer of a person's clothes, and bowler hat, floating as if someone is invisible, standing in front of a warped picture frame. Text reads, "H.G. Wells, The Invisible Man, As read by @CoRyWys, twitch.tv/corywysz, Starts Oct. 30, 7 P.M. PST"

#lostartofphotoalchemy #zebralife #twitchaffìliate #halloween #chronicillnessiswar

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Working from @heartwoodcoffee today. They have the best iced London fogs.

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