The Lumia Patient Advisor Council meets monthly and stays in touch with Lumia on a continual basis as we evolve the experience. In this new series, Meet the PAC, we're excited to introduce these individuals. May is ME/CFS Awareness Month, so we are excited to feature Maya's story!

Maya Lindemann

Follow Maya on Instagram for her The #PedroPascalPapers series!

Where do you come from? 

I am a dual citizen of the USA and Germany, and spent my childhood in Indonesia. Currently I live in Los Angeles, California.

Can you tell us about your background? 

I was a School Nurse, RWJF Clinical Scholars Fellow, as well as a Scientific & Exhibit Diver for the Aquarium of the Pacific and a Hyperbaric Chamber volunteer. 

How did your medical journey unfold? 

I had recurring migraines at a very early age, was always hypermobile, and probably had mild, undiagnosed POTS since my youth.

I developed Long Covid after an infection in the first wave of March 2020, followed by developing Postural Orthostatic Tachycardia Syndrome (POTS) and severe Myalgic Encephalomyelitis (ME). I also had an adverse reaction to Moderna, which caused stroke-like symptoms and accelerated my health decline to becoming bedridden. Eventually, I also developed Mast Cell Activation Syndrome (MCAS) and was diagnosed with Chiari Malformation. 

For over a year, I was completely flat, couldn’t lift my head, couldn’t speak, couldn’t read or write more than a few words at a time, and lived in almost total darkness. 

This has devastated my life. I am still bed-bound. I still live in the dark, but can sit reclined in bed and have short conversations. I need to use a wheelchair to access the bathroom.

Were you ever doubted by anyone?

Throughout March 2020, I developed respiratory distress several times, and was told “young people don’t die of COVID,” so EMS wouldn’t take me to hospital, despite not being able to breathe. 

I developed pericardial effusion, yet could not find a provider for months who would see me. My gynecologist was the only one who took me seriously, and noted my heart rhythm was significantly different than before and helped get referrals. Cardiologists dismissed my heart rate of 170 doing dishes as not significant. 

When I was no longer able to live independently, I stayed with a Physician Associate friend and together we looked up CMEs and found specialists that way. I now have a primary doctor who is open to learning, and takes guidance from my specialist. 

Did you have diagnostic delays or misdiagnosis?

The general lack of knowledge of ME and Infection Associated Chronic Illnesses really cost me dearly. Had they been common knowledge with proper medical screening, I believe I wouldn’t have become so severe. 

What frustrates you — or what would you change — about the current standards of medical care, access to care, or diagnostic journey?

My biggest frustration is the idea that medicine knows everything. For every rule there are so many exceptions. It is so vital to be humble & curious amidst the vast unknowns of physiology. Listen and believe patient experiences. It’s ok to say, “I don’t know, let's figure it out together.” 

Are there any new projects you have gotten into as a result of your condition?

I’ve become a much more active advocate. I've always been passionate about health education, and one project that I am working on now is a series of awareness raising social media posts, The #PedroPascalPapers. 

ME needs all the PR help it can get. There is so much stigma and misinformation about the condition. I think it’s critical to highlight the scientific evidence of abnormalities, so that there’s no doubt ME and other Infection Associated Chronic Conditions (Long Covid, Dysautonomia, etc) are real.

I listened to Pedro Pascal narrate Jamison Hill’s Modern Love essay on life and love with ME and couldn’t believe this hasn’t been used more to help draw people in to learn about the condition. Another community member, Elisa, noted several years ago how well Pedro Pascal matched infographics. With her permission, I decided to expand that idea and use my medical knowledge as an RN to make complex biomedical findings more accessible. I hope it helps make the research more attractive and fun to learn. Who doesn’t love Pedro Pascal?

What interests you about the wearable technology Lumia is developing to track drops in blood flow to the head?

I’m so excited about this technology. I read the original press release about Lumia back in 2023 and jumped on it! Lumia opens up a world of possibilities in managing health. Lumia really is going to illuminate the problem of blood flow to the head and it will be absolutely undeniable. I’m really looking forward to squashing the old guard thinking in medicine that these illnesses are psychosomatic. 

With such clear data, it’s going to be impossible to deny these illnesses and with that I hope comes a lot more research and treatment funding. 

The technology of Lumia is mind-blowingly impressive. The implications and potential uses are so vast. My bet is that in 5–10 years, it’s going to be a common use wearable.

Do you have anything you would like to share with people who are just beginning their health journey? 

It’s so disorienting falling unexpectedly into the invisible world of chronic illness. My best advice is start learning about disability justice, get to know your rights, and connect with people who understand what you’re going through. There is a lot to grieve, yet there is so much beauty to be found in a new adapted life. 

What’s your favorite way to help manage your Flow? 

When I can get them on, compression stockings! The thigh high compression is not only beautiful, but for me are very helpful to support blood flow.

If you were going to be living on a deserted island, what essentials would you pack in your suitcase? 

Tough question -- is there air conditioning? 

Have you found community or educational resources? Any doctors, nonprofits, educators, support groups, awareness groups, medical centers, or treatment centers you’d like to mention?

I love this question! I am so grateful to live in an age of social media that has allowed me to find and connect to researchers, advocacy organizations, and the greater patient community.

MEAction is the first organization I connected to, and remains a top favorite. 

Bateman Horne Center offers outstanding medical education and clinical guidance. 

Dr. Jennifer Curtin at RHTHM is as close to a perfect doctor as I’ll ever find: deeply knowledgeable, supportive and never runs out of strategies to try. I’m also now a patient advisor for RTHM intelligence. 

Renegade Research gets a big shout out as a patient-led organization that supports innovative studies. I had an idea for a study to help people with ME, and they said, "Great! Let’s make it happen!" 

Todd Davenport, PT, DPT, MPH, OCS is Professor and Chair of the Doctor of Physical Therapy Program. He is the ultimate guru on assessing for and managing Post-Exertional Malaise (PEM).

Long Covid The Answers Podcast is doing amazing education work! 

The Open Medicine Foundation (OMF) brings world-renowned scientists together to study, diagnose, treat, and cure complex diseases, with a focus on Long Covid and ME.

The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that supports critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other infection-associated chronic conditions and illnesses (IACCIs). Check them out!

Did you have anything else to share with the Lumia community?

I’m so proud to be part of this team, and get to represent the patient experience throughout the process. The dedication to the chronic illness community behind the scenes at Lumia is incredible. Believe me, they listen!

It’s so refreshing for illnesses that are notoriously ignored. A new product, let alone a whole new kind of technology, will always have bumps and frustrations.

Each decision is made with such thought for patients, everything from how do we make this very expensive new technology as accessible as possible, to do we release what we have now so people have access to something -- even if there’s glitches. 

We heard you did a rewrite on Will Smith's Fresh Prince of Bel-Air -- care to share it here?

🎶 Now this is the story all about how

My life got flipped turned upside down 

And I’d like to a minute just sit right there & tell you all about how I became the Princess of Bed-Hair 

In West LA have my feet up raised 

In a dark bedroom is where I spend most of my days-blood flowing, relaxing 

When a couple of symptoms, they get up to no good 

Started making trouble in my neighborhood

I got one little appointment & the doc dismissed me ‘it’s just anxiety & all in your head’

I tried to stand up

And when I got near

Room started spinning 

Ended up on my rear

I wish I could say that this fall was rare 

So I thought man forget it, yo back to my lair!

I’ll just sit on my throne as the Princess of Bed-Hair 🎶