Me & ME (myalgic encephalomyelitis) & ME Action!
A new position I'm honored to take on, more of my backstory, and some calls to action.
Hello, newsletter pals.
I want to let you know I’ve joined the board of ME Action, which is “building a global movement to fight for recognition, education and research so that one day, all people with ME will have access to compassionate, effective care.”
Currently, among many other things, we’ve got an important campaign targeting Walter J. Koroshetz, MD, head of the National Institute of Neurological Disorders and Stroke, for their flawed, insufficient, antiquated “plan” for ME research.
I hope you’ll head over there to endorse the demands #MEAction has for Dr. Koroshetz, calling on him to take these five actions now:
Provide set-aside funding for ME to accelerate research
Organize meeting of ME experts to reach consensus on patient selection methods and criteria
Fund the identification and validation of biomarkers
Fund a clinical trials network and treatment trials
Address disease stigma and lack of clinicians impeding research
MEAction is an inspiring, vibrant group of illders and our loved ones, with an international membership, state-level chapters, and lots more to come. Come on in!
But what’s ME, and what does it have to do with me?
ME is short for myalgic encephalomyelitis, which is often written out alongside the more commonly-known but misleading phrase chronic fatigue syndrome (CFS) to look like this: ME/CFS.
As MEAction explains:
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.
To get a picture of what ME looks like, particularly in its most severe forms, check out the stunning, Sundance-award-winning Unrest documentary created by ME Action founder Jennifer Brea. You can even get CME credit if you’re a provider; if you’re not, you can let your providers know, or arrange a screening!
And what about me and ME?
As far back as I can remember, I was a sickly kid. It seemed like every cold, flu or strep throat that was around took up residence in my body, along with a host of allergies. My non-severe but persistent health struggles, along with experiences of maternal abuse and family estrangement, were the hallmarks of my childhood and adolescence.
In 2006, things got weird in new ways (lots of stories of that to come…) Eventually, I was diagnosed with multiple sclerosis (MS). Then it was changed to a diagnosis of (the more rare) neuromyelitis spectrum disorder (NMOSD) about 5 years later. Both are pretty wicked autoimmune conditions with overlapping symptoms and dangers — but I lack different signs of each that should show up on spinal taps or MRIs.
Regardless, I went on to take six years of immunosuppressive infusions and IV steroids to break the cycle of neurodegenerative flares that have left permanent numbness, chronic pain, fatigue and dizziness in their wake.
I had and have rather typical fibromyalgia (which means that I am always having some level of fuzzy thinking and hurting owwww and sometimes I am oooowwww fuckkkk owwwwwwwwwww I can’t fuckkkinggg thinkkk alll I do is hurrrtttt).
And the winter after Trump was elected, I got guttate psoriasis, which means that my body was covered with spots like a funny lil leopard.
So far this winter, the spots haven’t come back, but I’ve got a pretty scary, frustrating problem with my neck. It hurts — a lot — and when I look up at all, I get queasy and dizzy and am risking a migraine. And I can’t turn it far to the right or left, and it does a creepy mini-click deep inside very frequently.
And I ate a handful of shredded coconut the other day and my throat started closing up because they were old and perhaps moldy? Thankfully, it quickly subsided after I swigged some kid’s benadryl we had on hand. No shortage of excitement.
Summary: I’m a handful. Oh yeah, I’m also transgender.
Turned away and nothing else to try
It’s relatively rare that I’ve been able to so readily collect diagnoses, as often people are told it’s in their heads or otherwise dissuaded from answers. But it’s a heavy handful of diagnoses that scares providers.
For example, I’ve been turned away from trans-specific care, right here in NYC, due to fear of my diagnoses - even though all I was trying to get was the testosterone I’d already been prescribed in another place I lived.
And I’ve had neurologists tell me they couldn’t guess how my gender journey - which includes both hormone blocking and hormone additive care - could affect my growing cluster of symptoms and diagnoses.
Four years ago, I quit getting immunosuppressive infusions. I’d chosen to fully reshape my gender hormones to move away from the mix most commonly seen in most autoimmune conditions (cis women). I also dove into somatic experiencing and other treatment for PTSD. My neurologist said those two moves were as good of a guess as anything he could prescribe.
It seemed like there was nothing else to try, and my work at this point in my journey was this:
Try to continue to heal from trauma, devise workarounds for fatigue and acceptance of pain, take courses of antibiotics with increasingly frequent experiences of drug resistance and mounting side effects for recurrent infections, and hope for the best.
But a few years back, thanks to the encouragement of my brilliant and unstoppable HIV activist/illder comrade Terri Wilder, I saw Dr. Susan Levine, one of a handful of clinicians in the United States who accurately diagnoses and treats ME.
I finally received the ME diagnosis, which fits how my immune system is both under-responsive to infections and over-reactive to my own body elements.
[Image description: ME activist Terri Wilder wears a red t-shirt and is speaking into a white box attached to a megaphone held up by JD Davids, who is wearing a white and black striped tank top. There are people walking by in the background, some looking over.]
Dr. Levine gave me lab tests which no one else had in 14 years of acute and chronic illness. I found out I have a weakened immune system, several chronic viruses, and a genetic condition that affects my body’s ability to process nutrients. Through use of both oral and injectable medication informed by these results, my fatigue diminished, and my pain was noticeably lessened.
I am incredible grateful for my health status, in which I have more mild presentation of at least three pretty severe conditions, and for my providers who work with me to sustain it.
And I also recognize my status as a white person with race, class, geographical, health insurance and citizenship privileges - plus having been raised by ACT UP as a research and treatment activist.
It’s only with this considerable privilege, knowledge, access and support - and still with significant strain - that I can manage the proactive self-care and medical system engagement. I can still work, dream of a future, and advocate for myself and others in times that call us all to action.
But it’s still a lot.
Each month, I navigate a maze of up to nine different pharmacies to obtain all I need for my care. Rather than saving anything from a life of work, I pay out of pocket for nutritional support, body work, car services to far off appointments and childcare that allows me to go to them, and so on. Today I got myself back to the urgent care (with a $50 copay) to confirm that this virus or whatever hit me a few nights back isn’t strep throat again (so far so good, but we’re waiting for the culture results…)
Queer blessings but #MillionsMissing
Realizing I was queer (which took a minute…) was a lifesaving blessing. Not only did it help me recognize and embrace my families of choice and community, it also paved my way as an HIV activist.
It was people living with HIV — many of whom did not survive into the era of effective treatment at the end of the last century — who taught me that we can demand and take a direct role in research and care. I credit that with transforming my life and allowing me to be around and fighting today.
And that’s how I know we can and must fight for so much more, when it comes to ME.
We need more than one far-stretched provider in NYC to address the spectrum of all affected by ME who can’t afford massive out-of-pocket fees. We need care coordination, paid peer support, locally-driven research, and more.
Some who get ME will have knowledge and resources to cobble together support, if they - like me - are financially stable, have less aggressive presentation of the disease, and benefit from class and race privilege, and live in the rare location that has a specialist.
But many do not, or are also facing additional challenges.
Here in New York City, the government has vowed to honor and protect my rights as a queer trans person. But it must also do so by acknowledging and addressing the health challenges so many of us face — challenges that can be brought on or exacerbated by minority stress, intergenerational violence and oppression, and other interlocking factors of illness and resilience.
And the federal research infrastructure that was forced to accelerate action to find truly effective treatment for HIV must step up to have a real research plan to address the ME crisis.
That’s why l spoke out at the #MillionsMissing rally last year to demand that my city of choice do all they can to give others this level of care that I have, and help shoulder the tremendous personal challenges it takes to sustain them.
And I’m ready for more. I’m honored to be on the board of MEAction to help build the power to bring justice to the ME crisis, not just in NYC but across the US and around the world.
Please consider donating to MEAction to support this work!