Solve ME/CFS Initiative, Inc.

In the early 1990s, Marcie got infected by the flu virus.... and never recovered. Termed Myalgic Encephalomyelitis (ME), or chronic fatigue syndrome, this largely ignored disease has led to Marcie being robbed of so much of her quality of life for decades now. Chronic pain, lack of energy, poor sleep, concentration issues,... symptoms you and I and your loved ones cannot possibly imagine have been Marcie's constant battle, every minute of every day for 32 years and counting now.

Sadly, our healthcare system has been unable to make a difference for the millions of ME patients like Marcie for so long now. Especially watching what many of you have done to help so many patients with other diseases during those same decades.

And now, the situation is dramatically worsening as the world increasingly confronts the lingering, unresolved chronic impacts following the billions of acute Covid-19 virus infections. Commonly referred to as Long Covid, dozens of millions (in the US alone) are getting ill just like Marcie did decades ago. The economic costs are massive already - estimated to be in the $Trillions, with as many as 4 million out of work as a result. CNBC refers to Long Covid as the 'next public health disaster rivaling the Great Recession.'

We can avoid this outcome!

Let's put our collective will and smarts together to shorten the plight for these newly ill and to finally deliver relief to the millions who've suffered from post-viral infectious diseases for years like Marcie.

It will take a growing, relentless focus to marshal societal awareness, government engagement, and scientific innovation to Solve the challenge. That's precisely what the Solve ME Initiative has been working to do. And we've been doing so for over 35 years, longer than any other patient-led advocacy organization in the space.

In retirement, I am throwing myself at this cause. Join me to help make a difference:

I'd love to share with you all the terrific work and successes of Solve ME and Solve Long Covid over my eight years of involvement. As Board Chair, I can assure you that any donation, big or small, that you may graciously make will be super appreciated and used impactfully and efficiently.

Thank you!

John

More information about Solve ME

More details about Solve Long Covid

Join me to help raise $1,500 for Solve ME to support awareness, research, and treatments for ME/CFS.

What is ME/CFS?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and is often triggered by an infection.

At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, cure, nor FDA-approved treatments or drugs for ME/CFS, and patients suffer with disabling symptoms for life. Recovery rates are only about 5%. Approximately 70% of patients are unable to work at all, and 25% of the most severe patients are housebound and/or bedbound.

I am a part of this 25%. After first visible symptoms in 2010, I am now housebound, and must be supine most of the day.

This fundraiser is for M.E., not for me. I face my day-to-day reality with fortitude and determination. I am profoundly privileged to have resources and support. But so many do not. This fundraiser is to raise money to make change in the lives of others.

Patients and their caregivers must often manage without much awareness or support from clinicians. There are fewer than 2 dozen nationally recognized experts in the U.S. Most have full clinics and are unable to accept new patients. A 2015 study demonstrated that ME/CFS patients have the greatest disability and lowest quality of life in comparison to other major diseases and illnesses, including multiple sclerosis, cancer, stroke, and kidney failure. ME/CFS costs the U.S. $18–24 billion in lost productivity and medical costs a year, yet ME/CFS is comparatively the least funded disease by the NIH. Fundraising, research, and advocacy have fallen upon patient advocacy groups.

As a person with ME (pwME ), I confront fluctuating and dynamic symptoms that inhibit my ability to do basic tasks. At 35, I would never have imagined I would be unable to explore the outdoors, engage in creative activities I love, or pursue my career path which had offered profound fulfillment. I would never have fathomed I would face challenges with basic day-to-day tasks and experience daily disabling symptoms. Lack of awareness, education and research in the clinical community means I have endured over a decade of gaslighting, dismissal, and often traumatic testing and experimental intervention. In fact, a recent study demonstrated that “do-no-harm," rather than intervention, should be a guiding principle in all practice due to the lack of efficacious therapies and the potential for worsening the condition with experimental approaches.

This is unacceptable. Patients need hope, support and future options for treatments.

Solve ME is stepping up to provide hope through research, build community for isolated patients, and inspire funding and research through fostering awareness and medical education.

What am I donating to?

Solve ME is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for ME/CFS, Long Covid and other post-infection diseases. Their work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world lays the foundation for breakthroughs that can improve the lives of millions.

The advocacy and research of Solve ME supports establishing better medical education on ME/CFS so that others will get diagnosed faster and more easily find clinicians able to support complex symptom management. Their work and grant programs also promote funding and interest for research that might one day offer patients therapeutic treatments.

I am on the Lived Experience Taskforce of Solve ME. This taskforce serves as leadership partners with Solve ME. This partnership is based on the principles of meaningful community engagement where equity is the goal and expectation. LET partners — many from historically under-engaged communities — improve Solve ME’s ability to deliver responsive services, programming, training and technical assistance to organizations and other partners affected by ME/CFS and Long Covid.

What if I cannot donate at this time?

Whether or not you can donate, I’m inviting you to join me in additional ways to help raise awareness and show support of this often invisible population of patients.

How you can participate beyond donation:

UPDATE:

WE REACHED MY ORIGINAL GOAL OF $1,500 with one week to go. So I am uping the goal to $2,000 by May 15th!

In honor of hitting my original mark I have published a recipeto inspire your Blue Sunday celebrations.

UPDATE:

We hit goal number two! Now can we raise 5K? The amount of Solve M.E. mini research grants?

We're grabbing our bikes and Pedaling for Progress! This summer we'll be biking the 240-mile Missouri Katy Trail, the longest developed rail-to-trail in the country. And we want to do a little good along the way by raising money for Solve ME, the country's oldest non-profit advocacy organization for ME/CFS (Solve ME).

I'm Kevin and my wife, Michelle, has a disabling disease that has no diagnostic test, no approved treatments, and hardly any doctors available to manage it. I've roped some buddies into Pedal for Progress with me and we hope you consider donating at whatever size is right for you because Solve ME works tirelessly through research, advocacy, and education. Any amount is appreciated, here are some suggestions.

$0.25 per mile is just $60

$0.50 per mile is a generous $120

$1.00 per mile would be an amazing donation of $240

All money raised will go directly to Solve ME.

My wife and I gravitated toward each other and bonded over our mutual love for all things active. We took every opportunity to hike, bike, kayak, run and travel together. In January 2021 we had our last adventure. Michelle was feeling run down but had been for a while. She kept pushing through her workouts, noticing they were getting progressively more difficult for her to finish. We went cross-country skiing anyway. She pushed herself. That was her last workout. Over the last two years, she's experienced many more lasts.

Michelle had been diagnosed with a primary immunodeficiency around 2010. Parts of her immune system are missing and other parts just don't function properly. For this, she has to infuse immunoglobulin replacement therapy every week.

By 2019, she was starting to experience severe episodes of exercise intolerance that brought extremely weak and painful muscles and fatigue--more than fatigue--a total depletion of all energy. Throughout 2020, it continued to plague her but she continued to push herself through. That day in January 2021 changed everything.

Michelle's condition declined, her symptoms multiplied and the diagnosis was ME/CFS. She was fortunate to access one of the nation's few experts via telehealth who knew what tests to run and what diagnostic criteria to use. Michelle has had to give up her career and much of her life as she previously knew it. ME/CFS is a neuroimmune disease that can be absolutely devastating. On her worst days, Michelle is unable to move or talk. She now regularly uses a wheelchair and is often bedbound. ME/CFS is largely post-infectious and has been documented to occur in waves following outbreaks and pandemics, and is now revealing itself again through Long Covid.

The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for ME/CFS, Long Covid and other post-infection diseases. Their work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world is laying the foundation for breakthroughs that can improve the lives of millions.

More About Solve ME

ME/CFS Facts

If you're interested in knowing more about ME/CFS, this is a 20-min Solve ME webinar with Michelle's doctor, Dr. Susan Levine.

Donate if you can.

$0.25 per mile is just $60

$0.50 per mile is a generous $120

$1.00 per mile would be an amazing donation of $240