What we know about Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)
ME/CFS is a complex condition
How brain donation can help researchers understand Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)
Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a complex and often debilitating condition characterized by profound and persistent fatigue that isn’t relieved by rest and can worsen with physical or mental exertion. It’s usually accompanied by a range of additional symptoms including muscle and joint pain, poor sleep, headaches and “brain fog.”
An estimated 2.5 million Americans suffer from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS,) though exact numbers are difficult due to challenges in making a diagnosis. There are no definitive tests, and it often involves ruling out other conditions with similar symptoms. While the cause of ME/CFS is not well understood, it’s considered a multifactorial condition, meaning it might arise from a combination of genetic, environmental, and possibly infectious factors.
Some people with Long COVID experience symptoms similar to those of ME/CFS. Long COVID refers to a range of symptoms that persist for weeks or months after the acute phase of a COVID-19 infection has resolved. These symptoms can include chronic fatigue, cognitive difficulties, muscle and joint pain, and sleep disturbances—many of which overlap with ME/CFS symptoms.
Brain donation can provide valuable insights into the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Studying brain tissue from individuals with ME/CFS can help researchers identify structural and functional changes associated with the disease, as well as specific biomarkers or molecular changes that could be used for diagnosing ME/CFS or monitoring its progression.
By understanding the underlying biological processes, researchers can develop targeted treatments or interventions aimed at addressing the root causes of ME/CFS.
Consider donating your brain to neuroscience research to help future generations
Here’s how it works:
Register In Advance
Complete the online form here. Your brain bank will send consent forms and request additional information directly from you.
Inform Your Loved Ones
Talk about your decision and desire to donate your brain to neuroscience when you pass. Your family will need to play an important role in ensuring your wishes are carried out promptly.Notify Your Brain Bank
Your family will contact the brain bank immediately upon your death. The brain bank will make arrangements for the brain to be removed (respectfully from the back of the head so it is not disfiguring) typically at the family’s funeral home. There is no cost to the family.
Benefit From Your Gift
If requested your family may receive a Summary of Neuropathological findings about your brain. Even more importantly, so many families tell us it helps them heal knowing that science will be advanced with this valuable brain tissue.
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Common Questions
How can brain donation help those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)?
Brain donation is critical for understanding more about ME/CFS. Donated brains provide data for researchers on brain structure and function, which helps in understanding the disorder, and in developing new diagnostic tools and targeted therapies to better treat and manage.
Since one brain can provide tissue for dozens – sometimes hundreds – of neurological studies, an individual brain donation is a highly valuable gift that almost anyone can make.
Do I need to have a brain disorder, like Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), to donate my brain?
No. To ensure research is thorough, it is extremely important that scientists have access to donated brain tissue from people who did not have brain diseases. This is known as control tissue and it is crucial that scientists compare it directly with tissue from a person with a neurological diagnosis to determine differences. In other words, non-diseased brains are extremely valuable to neuroscientists as they must be part of every study.
I’m already an organ donor. Does this include my brain?
No. Organ donation and brain donation are separate matters. An organ donor designation on a driver’s license does not include brain donation. Depending on the circumstances of death, it may be possible to donate organs for transplant as well as the brain for scientific research. If this is the case, the recovery teams will coordinate so that both kinds of donations can take place. Separate registrations for both organ donation and brain donation should be completed, if the intention is to donate both.