Life in the Void

My bloodwork never matches how I feel. Treatments don't work or make me worse. I am constantly dumping energy into seeking new treatments that likely won't work. This system has failed us...✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research

I think of you all every day as I work to untangle the complex molecular basis of this horrific disease…I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure… Link to Fundraiser ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate

Whatever you’re celebrating this holiday season, so many of us will be lonely…It’s important when we have lost something to not just focus on what we have lost, but also remember what we still have. This is the way we can survive anything.✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research

If we head into the Holidays with no plan and expect to "feel our way" through it safely, we will likely be in for a deathly surprise crash that could be devastating…So we need to make a plan ahead of time for how we will use our energy during the holidays…and stick to it… ✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Resea

A great example of how our health care system fails chronically sick people: My Jtube clogged... A Jtube breaking or clogging is an emergency - it means a person cannot eat or take meds. You would not even leave a dog stuck in a house with no food or water.✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research

There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday I will be a part of it again. For now, I hibernate with the rest of you…✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research

I need to speak to a disgusting and ignorant post by someone on X/Twitter...No one with ME/CFS or Long Covid should EVER feel embarrassed by how they look or how they have to live their life, and no one with ME/CFS or Long Covid should EVER feel like they need to hide what they look like or what their life is like from the public.Fundraiser Link: http://spot.fund/FindACureForMEcfs�

Hi everyone, I’m doing another fundraiser for Ronald W. Davis PhD.’s ME/CFS research for my 41st birthday! http://spot.fund/FindACureForMEcfs…Since 2020 we have raised $184,000 for Ron’s research solely from my birthday fundraisers! This is incredible and only possible because of all of you…Let’s all come together and get Ron the supplies he needs to do these critical e

It says a lot about the unique and widely misunderstood challenges that ME/CFS and Long Covid patients face that there could not be an ME/CFS Olympics. Because if we tried to compete and push the physical limits of our bodies like that, all the winners would simply be dead…✏️ My ME/CFS Blog ❓What is ME/CFS? 👤 My Story 📄 ME/CFS Resources 🙏 Donate to ME/CFS Research

No one ever sees the world of color that lives inside of me because the black void doesn’t let it out. I feel it, smell it, taste it. I exist there in every moment of my life. But the only thing anyone ever sees are the bits of dust of a broken down machine…When the world of color and light shines, this second world coughs and flounders and lays down a blanket of death…✏️