Support M.E. research with me!

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?