You + M.E. Registry and BioBank Seeks to Build ME/CFS Resources

 

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.


Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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