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An introduction

Myalgic Encephalomyelitis, also known as ME/CFS,* is a neurological, endocrinological, and immunological disease that has no cure, scarce mainstream recognition or support, and has become a public health crisis on par with HIV/AIDS of the 1980's. At least a million people in the USA have ME/CFS — up to 2.4 million people — and it affects millions more worldwide. Many more are unknowingly at risk.

The gut is a major player in ME research. The immune system starts in the gut. A body’s microbiome, digestive functions, and neural networks (particularly neurological inflammation, and certainly the vagus nerve) are just a few of the most salient topics.

Myalgic Encephalomyelitis is close to the “heart” of ME is the reason I’ve found myself preoccupied with subjects relating to the gut, brain, and many other interactive systems of the body since 2013. I have an initial diagnosis, with second opinions and more medical consults to follow. I am mostly bedridden. My condition is declining.

I have been saying for years, “Where are the others like this? Are they not getting care either? I can’t be the only one…”

I was right. They were out there. It just took me four years to find them — because they're invisible.

Now that I have, I want to do the best I can to contribute to compiling a resource that reflects my learning over time… the stories of moms, dads, sisters, brothers, daughters, sons, dear companions, and beloved friends who are affected… the amazing advocates I am discovering… to what end, we will see. Usually, when I do something like this, I make art out of it.

I sure will if I can.

So here’s our plan, and I hope you’ll follow along:

An open field: This publication is not, and cannot, be only about Myalgic Encephalomyelitis. ME bears a striking resemblance to several other diseases — Chronic Lyme, Multiple Chemical Sensitivity, Fibromyalgia, and Gulf War Illness among them — that seem to share the same immunological and neurological systems. The research processes for one of these should benefit the others, and coordinating our efforts to support one another is paramount.

Many people with suspected ME do not ever have the resources to get diagnosed at all (much less accurately), and may never know why their bodies are breaking down. For this reason, we must talk about illness altogether — how we think about it, what we do about it, and what kind of society we want to live in.

People who get sick and stay sick tend to become invisible. Maybe we can make them visible again.

Diverse perspectives: We intend to pull materials of all kinds that represent the most at-risk sufferers of ME/CFS and other misunderstood illnesses, especially severe cases, those becoming severe, those without resources or support, and cases that are complicated by co-morbid factors that may be unfamiliar to some readers, such as poverty, estrangement, homelessness, sexism, racism, paternalism, insufficient access to appropriate healthcare, and other societal dysbiosis. (To be fair, though, if we’re playing a numbers game? I bet you’ve experienced at least one of the things on that list.)

People in more than one of the listed categories have a much reduced ability to speak for themselves. It’s important that we keep them a prioritized part of the conversation and amplify their voices however we can.

Preventative potential: Many ME/CFS sufferers are in the early stages of recognizing that their case may become much more severe, as I am, and see that they have a chance to arrest its momentum. With ME/CFS, irreversible damage is on the line. The effects can be catastrophic.

Some who see this challenge in front of them are still reasonably functional, and some, like me, are largely bedridden. We are on a cusp where we recognize that with a little more help, we could stabilize and have a chance to contribute to the world again in some way.

Having witnessed the destruction caused by diseases like these, we want to dedicate our able moments to helping those who have less facility. We want to work again. We want to take care of our families. We want to advocate for other sufferers of our disease!

But if we do not get help ourselves soon, we will also be among the most severe cases that cannot talk or move, cannot bear light, and cannot eat except through a tube.

Or maybe we will be homeless, or jailed, or dead, because of the strange and unfortunate ways our society treats its most misunderstood, most vulnerable citizens.

So you see, you don’t have to have ME/CFS to have a gator in this fight.

The more we talk to each other, identify shared needs, and coordinate efforts to help one another, we’ll have a better chance than we did before.

Compassion for imperfections: I commit to being gentle with myself and forgiving my own verbal and written foibles, and I hope you will too.

In previous lives I was high performing, detail-oriented, intellectually intense, and multi-disciplinary; I worked in arts, music, writing, marketing, community.

My verbal brain now, like many with ME/CFS, does not always quite do what I ask it to do. Since 2013, my available wording is often insufficient to fully or accurately communicate my meaning. Often those words are all I have at my disposal in that moment, though, even if I can “see” the more desirable words in my mind — I cannot always get them to come out of my mouth, or to translate to text via fingers on a keyboard. I have a lot of trouble editing, too; frequently my brain will simply “shut off” the ability to continue reading or comprehending a particular piece of text in front of me, and I won’t be able to come back to it for days or weeks or longer.

I know that my communication in this space will feel unacceptable to me in many ways, having left behind a more “abled” and precise career in communication and not knowing if I will ever be able to return to that level. But I also know that I will not communicate at all if I insist on communicating perfectly.

Considering the crisis that ME/CFS represents in our society today, and how many voices are already silenced, it feels very important to me to raise my own.

So I hope you’ll forgive my mistakes, too. No matter what misunderstandings we stumble over together (and I’m sure we will), I hope that you’ll take the spirit of my message to have a lot to do with compassion, and kindness, and sharing.

That’s where I’m coming from.

Finding out about ME changed everything for me. I was an unsolved medical mystery scrabbling for any useful information for years. Now I know that I’m an unsolved medical mystery of a very specific kind — a disease with a name (quite a few, actually), a controversial and intriguing history, a passionate community, a number of advocacy groups, and doctors and researchers who are working faithfully on our behalf to find out more. What a gift that is!

I hope to give something back, too.

* Also CFIDS, SEID, and Chronic Fatigue Syndrome. One of our favorite resources is the Open Medicine Foundation (What Is ME/CFS?).

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