In order to better understand rare conditions and diseases, researchers sometimes create registries and biobanks full of resources. Recently, the Solve ME/CFS Initiative (Solve M.E.) announced the launch of their own You + M.E. Registry and Biobank. Ultimately, You + M.E. seeks to build awareness of myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS). In addition to providing clinical information, ME/CFS-related symptoms, and biological samples, researchers will leverage You + M.E. data to better understand seemingly similar COVID-19 symptoms.
You + M.E. Biobank
For nearly 33 years, Solve M.E. has worked to build education surrounding ME/CFS. According to their website, the nonprofit organization:
works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure, and seeks to engage the entire ME/CFS community in research, advocacy, and patient support.
Through a partnership with patients, researchers, and clinicians, Solve M.E. developed the You + M.E. Registry and Biobank to learn more about ME/CFS progression, causes, and potential treatments. The Registry and Biobank works in 6 steps:
- Signing up: Both people with ME/CFS and healthy controls may sign up for You + M.E. Interested in joining the registry? Sign up here.
- Self-reporting: After signing up, registrants self-report health and demographic information.
- Downloading: Next, registrants will receive a link to download the You + M.E. mobile application. This should be downloaded to the phone.
- Tracking: Over time, the application will track activity levels, overall health, symptoms, and other pertinent data.
- Submit biological data: Then, participants (controls and patients) will submit blood samples to the biobank.
- Research: Once data and samples are collected, researchers analyze de-identified data for trends, biomarkers, and other insights.
COVID-19 and ME/CFS
As you’re aware, the last few months were overtaken by COVID-19, a viral infection that has since become a global pandemic. Research has shown that some patients, instead of recovering after their infection, develop symptoms consistent with ME/CFS. Says Dr. Mady Hornig, MA, MD:
“This intensive, prospective look at [COVID-19] infection may also inform [treatment candidates and] strategies that prevent ME/CFS from developing.”
To more deeply understand the intersection of COVID-19 and ME/CFS, You + M.E. will compare data from controls and patients with ME/CFS to data from patients with recurring COVID-19 symptoms.
ME/CFS
Doctors aren’t sure of the exact cause of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, some believe the chronic disorder results from genetics, immune or hormone problems, or infections. ME/CFS causes severe and unexplained fatigue that worsens after physical or mental activity. Unfortunately, patients with ME/CFS often do not feel refreshed even after resting. Generally, ME/CFS affects people between the ages of 30 and 50, with females experiencing it more often than males. An estimated 20 million people around the globe have ME/CFS.
In addition to severe fatigue, symptoms of ME/CFS include:
- Dizziness
- Blurry vision
- Difficulty concentrating and forgetfulness
- Joint and muscle pain
- Sensitivity to light and sound
- A hindered ability to live normally (showering, cooking, laundry, work)
- Excessive sleepiness
- Organ failure
- Frequent and intense headaches
- Sore throat
- Depression and anxiety
- Swollen lymph nodes in the neck and armpits
Learn more about ME/CFS here.
