What We Know About Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)

ME/CFS is a complex condition — brain donation can help researchers understand it better

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.

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What others have said after pre-registering:

“For 34 years now (2023) I have battled chronic fatigue syndrome. It has ruled half my life, and my wallet. As a scientist at heart, I want to further learning, so please study my brain.”
– Registered Donor, G.L.

“As I was brought up being told that one person can make a difference, which is so true, the decision came within seconds. I just hope I can help. The greatest contributions are the ones you leave behind."
– Registered Donor, B.

Common Questions

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.
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.
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.

What We Know About Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)

Interested in learning more about the donation process?

Not ready to pre-register yet? Join our newsletter to stay in touch!

What others have said after pre-registering:

Common Questions

How can brain donation help those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)?

Do I need to have a brain disorder, like Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), to donate my brain?

I’m an organ donor, does that include my brain?

What We Know About Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)

Interested in learning more about the donation process?

Not ready to pre-register yet? Join our newsletter to stay in touch!

What others have said after pre-registering:

Common Questions

How can brain donation help those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)?

Do I need to have a brain disorder, like Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), to donate my brain?

I’m an organ donor, does that include my brain?

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