Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction (Institute of Medicine, 2015). Individuals with ME/CFS experience a range of symptoms including significant impairment in function, post-exertional malaise, sleep impairment, cognitive issues, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal and genitourinary issues. Post-exertional malaise (PEM) is the hallmark of the disease in which even trivial amounts of activity result in a prolonged exacerbation of symptoms and a further reduction in function. The cause(s) of ME/CFS are unknown, but many individuals with the disease remain ill after an acute infection with symptoms that persist for six or more months. There is no diagnostic test or FDA-approved treatment for ME/CFS.

According to the CDC, more than one million Americans may have ME/CFS. At least one-quarter of individuals with ME/CFS are bedbound or housebound at some point during the illness and most never regain their pre-disease level of functioning. ME/CFS strikes people of all ages and racial, ethnic, and socioeconomic groups, and is diagnosed two to four times more often in women.

The disease is characterized by at least six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. It is sometimes preceded by flu-like symptoms followed by pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat, and headache. A distinctive characteristic of the illness is post-exertional malaise (PEM), which is a worsening of symptoms following physical or mental activity occurring within 12-48 hours of the exertion and requiring an extended recovery period. Although the cause of ME/CFS remains unknown, symptoms may be triggered by an infection.

Learn more about ME/CFS.

Fatigue is a term used to describe an overall feeling of tiredness or lack of energy. It isn't the same as simply feeling drowsy or sleepy. When you're fatigued, you have low motivation and low energy. Being sleepy may be a symptom of fatigue, but it's not the same thing. If fatigue persists over a long period of time it is termed chronic fatigue. ME/CFS is distinct from chronic fatigue because there are several additional symptoms that are not seen in an otherwise healthy person who has chronic fatigue.

ME/CFS symptoms vary from one individual to another, but may include:

• Extreme exhaustion, which is made worse by physical or mental effort—this symptom, called post-exertional malaise (PEM) is unique to ME/CFS.
• Nonrestorative sleep
• Brain fog/cognitive impairment
• Joint pain
• Inflamed lymph nodes
• Persistent sore throat
• Severe headache
• Neurological abnormalities
• Complete organ system shutdown
• Sensitivity to light, sound, odors, chemicals, foods, and medications

Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—identifying which illnesses are present can be difficult. Some individuals receive diagnoses for multiple conditions. Common conditions that occur along with ME/CFS (co-morbidities) include the following:

• Fibromyalgia
• Orthostatic intolerance
• Postural Orthostatic Tachycardia Syndrome (POTS)
• Irritable bowel syndrome
• Interstitial cystitis
• Temporomandibular joint disorder
• Chronic pelvic pain
• Multiple chemical sensitivity disorder
• Ehlers-Danlos Syndrome

Post-exertional malaise (PEM) is an exacerbation of some or all of an individual's ME/CFS symptoms that occurs after physical or cognitive exertion and leads to a reduction in functional ability (Carruthers et al., 2003).

Although challenging, experienced clinicians recognize and are able to make the diagnosis of ME/CFS. Visit the CDC to learn more about how ME/CFS is diagnosed.

Individuals with ME/CFS, their families, and caregivers may contact Solve ME/CFS Initiative (solvecfs.org) and ME Action (meaction.net) for information and support.

The two ME/CFS Collaborative Research Centers at Columbia University in New York City and Cornell University in Ithaca, NY, are funded by the National Institutes of Health (NIH). The research at the two Centers is focused on identifying the underlying cause(s) of ME/CFS. Both Centers are interested in the impact of the disease on individuals: the underlying biological factors of ME/CFS; and other potential indicators such as tissue changes, immune cell differences, and genetic variants that may shed light on the cause and severity of ME/CFS over time.

Information about the specific research being conducted at each of the ME/CFS Collaborative Research Centers may be found here:

Columbia

Cornell

In addition, NIH supports individual investigators across the USA and in the UK. See: https://report.nih.gov/funding/categorical-spending#/

The Data Management Coordinating Center (DMCC), housed at RTI, facilitates and coordinates the research activities carried out at the three Collaborative Research Centers. The Center provides support for infrastructure, data management, and outreach to the community and ME/CFS stakeholders.

ME/CFS research is challenging for several reasons:

• There is a need for more researchers to focus on ME/CFS to expand the scope of research on this disease.
• The symptoms of ME/CFS can vary from one individual to another and in a given individual from one day to the next, making it very challenging to study the disease. Researchers are exploring ways to subtype individuals with ME/CFS to get more clear answers about the cause(s) and impact of the disease.
• Many individuals with ME/CFS have normal results on standard laboratory tests, so researchers need to develop new assays and new ways to study ME/CFS.
• It is often difficult for individuals with ME/CFS to participate in research because of the severity of the disease.

In fiscal year 2023, the NIH funded $13 million in research on ME/CFS. This amount has increased from $5 million in 2015 and there are significant efforts continue to increase the number of investigators studying ME/CFS and the number of grant applications submitted to NIH for consideration for funding in the peer review system.

There are several ongoing studies in the ME/CFS Collaborative Research Centers that you can participate in, as well as studies at other research centers. For studies that are recruiting participants (both individuals with ME/CFS and healthy controls) in the ME/CFS Collaborative Research Centers go to: https://mecfs.rti.org/get-involved/.

For all ongoing clinical studies in ME/CFS, go to clinicaltrials.gov.

Solve M.E., a nonprofit organization, supports a registry in which individuals with ME/CFS can register, provide their medical information, and agree to participate in research. Visit Solve Together to find out how you can participate.

The Open Medicine Foundation (OMF), a nonprofit organization, hosts a participant registry to accelerate ME/CFS, Long COVID, fibromyalgia, and other post-infection illness research. The registry connects individuals interested in participating in research with the researchers conducting the studies. Visit the OMF StudyME Registry to learn how you can participate.

Many of the studies underway in the ME/CFS Collaborative Research Centers are collecting biospecimens and detailed clinical information from individuals with ME/CFS and healthy controls for their research. If you are interested in participating in research, contact one of the research sites: https://mecfs.rti.org/get-involved/

Yes, you can donate your body and/or brain at the time of death to research. The Brain Donor Project supports the brain banks of the National Institutes of Health (NIH) NeuroBioBank. This infrastructure formed in 2013 as a resource to the research community by making available this precious tissue for their studies. Many individuals with ME/CFS have pre-registered through the Brain Donor Project, but it is a sensitive decision that each individual should make on their own or together with their family.

If you're ready to sign up, click on the "Sign Up" button at the top right, and complete the online form. You'll be asked for contact information and whether you've been diagnosed with a neurological condition. If you are acting on behalf of a loved one with ME/CFS, it's important to know that this must be done prior to the individual passing away.