Surviving severe me/cfs

05/17/2025

I adopted a kitten.

Part of me worried it was too soon after losing my beloved Pushkin. I still grieve for him deeply, and I miss him every day. But the emptiness, the darkness—it became too much to bear.

Grief never leaves me, not just for Pushkin but for the life I’ve lost to illness. I live in pain every minute of every day, and lately, I felt like I was sinking. I even considered seeing a psychiatrist, but I’m already on every medication that could possibly help.

So instead, I took a leap of faith—and brought home a tiny ball of life named Timothy.
And the darkness lifted.

He’s brought a spark of joy, a lovely, playful energy that helps me through each day. I’m in love.

04/28/2025

We are so honored to share this powerful TedX talk with you from Georgia’s own Maggie Boxey! Maggie is a person with ME, a Navy veteran, and a published author. She shared her story in her recent TedX talk, “I Am One of the Millions Missing” where she invites the world to “please join me in making the invisible visible by seeing and serving the Millions Missing.”

Maggie shares, “While we may be invisible to society-at-large, the community I have found within chronic illness spaces on the internet has been my biggest asset. I’m a member of MEAction Georgia. We show up for each other from our beds…. We cry with each other… and we laugh with each other and share our joy…We meet for advocacy action and to support one another.”

Please see our article to learn more about how this TedX Talk came about and what Maggie has planned next. MEAction was honored to have a part in Maggie’s extensive preparation and we could not be more proud of her efforts. https://www.meaction.net/2025/04/21/meaction-georgia-volunteer-maggie-boxey-speaks-at-tedxojai/

In the article we shared how Maggie credits MEAction Georgia and staff members with the support she received when preparing for TEDx. “Shalida Dobbins had a meeting with me to hear one of my final drafts, and she was so supportive. Then I was able to meet with Scientific Director Jaime Seltzer- which was such a positive experience. She was so kind and a really good editor! I’m so grateful for the love and support I've gotten from .”

We want to say to Maggie - we are moved and grateful and honored! Thank you for sacrificing precious time, energy, and platform to make the be seen.

Please share the TedX Talk! It is a wonderful way to share about our upcoming . https://youtu.be/JzKfi8LOMQU?si=wC21BqvfOi17KmhF



ID: Grey square image. with a photo of Maggie Boxey (light-skinned woman with short hair wearing a blue top and dark pants sits in a wheelchair) with a TEDx Ojai sign behind her. Text: "Maggie Boxey at TedxOjai. Georgia Volunteer." logo in the bottom right corner.

04/16/2025

This is definitely SOS, the funding and medical care for people with ME in US is already worse than mediocre, it’s about to get much worse:

On May 12th, and the are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society. HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid ...

04/04/2025

Despite all things that are going on in my life and outside of it, this sunny poncho came about.

03/13/2025

My heart is broken beyond words.

Yesterday, my dear kitty Pushkin, died suddenly from a heart failure.There were no warning signs at all, in the morning I had my darling kitty, a few hours later he was gone. He was only 6 years old.

Pushkin was my best friend, my constant companion, the only one who was always by my side.

Having severe ME is so lonely, and he made it less lonely for me. He would snuggle next to me, wrapping his little paws around me in a hug. He was very protective of me as well.

He was the biggest comfort through my illness and now I am lost without him.

It’s so empty and I am still in shock. He was just there and now he is gone. I can hardly believe it happened .

I miss him so much it’s unbearable.
Rest in peace my darling boy, you were so loved and I will remember you forever.

03/02/2025

02/20/2025

Open Medicine Foundation is creating StudyME registry for possible participation in current and future studies . Most of them are from home ( considering our condition )
Please sign up if you haven’t already . Let’s get the ball rolling !

https://studypages.com/omf/studyme

Help accelerate the cure for ME/CFS, Long COVID, and related diseases through research participation

01/14/2025

Let everything happen to you: beauty and terror .Just keep going. No feeling is final.

12/30/2024

Another year came and went.

It was a hard one. Every year it’s getting harder. I am getting worse, despite all my efforts to the contrary.
My crashes are getting longer and more torturous. My POTS is getting worse and so far not responding to treatment. More things become unavailable to me, and I grieve the loss of every little thing.

In fact, I can’t find anything to look forward to.

On the positive side, I am learning a new craft. Embroidery is becoming harder for me to do, so I started crocheting. I got a little obsessed with it, as it keeps me busy for as much as I can be.

I finally got approved for a caregiver service, so after a few busts, I finally have someone who seems a good fit. At least for now, and right on time as I became so much more limited in what I can do.

So, that was 2024.
Honestly, I am afraid to think of what’s ahead. I’ve been talking to my good friend ChatGPT, and while it’s been very helpful in terms of my treatment options, it also doesn’t expect any breakthroughs in the next 5 years. I don’t know if I can make it.

With all that said, hope doesn’t die that easily, and I still have it. I hope I’ll discover something to look forward to. That’s my ambition for 2025.

I wish you all to keep the hope alive!

10/21/2024

“There is a city nearby that we hide from view. Its people are of all ages, ethnicities and classes. What unites them is a disease: all are diagnosed with myalgic encephalomyelitis, or ME.

We hide them there because we don’t know where else to put them. Like a plague village, we have no plans to treat them, to study their disease or to trial possible drugs for them. We could choose to draw up such plans, to give the residents hope for their future health. But our country’s choice is to turn away and forget about these 250,000-plus inhabitants altogether. A city the size of Brighton that we deliberately ignore.”

The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.