People with me

DIAGNOSIS & DOCTORS

Myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS) is a complex chronic disease that presents with symptoms in multiple body systems.  ME is a neurological disease according to the World Health Organization.  

ME is characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after what may be minimal physical or cognitive exertion). The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.

Susceptibility may be genetic, but the disease is triggered by an infection in the majority of patients.  ME may be severe: 75% of those affected are unable to work and 25% are homebound or bedridden. ME is also common, with 15-30 million sufferers worldwide.

MAJOR SYMPTOMS include:

Post-exertional malaise

Unrefreshing sleep

Cognitive dysfunction and/or orthostatic intolerance

Many patients also experience a range of other neurological, autonomic, and immunological symptoms either as a permanent feature of their illness or during a “crash” or flare. These symptoms include:

  • Pain in the muscles and joints
  • Headaches of a new type, pattern, or severity
  • Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation
  • Sensitivity to light, sound or vibration, taste, odor or touch
  • Gastrointestinal symptoms such as nausea or abdominal pain
  • Muscle fatigability
    weakness and fasciculation; poor coordination and ataxia
  • Autonomic and endocrine 
    symptoms such as poor temperature regulation, cold or heat intolerance
  • Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities

For decades, “chronic fatigue syndrome” was a diagnosis of exclusion, resulting in the delayed and misdiagnosis of countless patients. In 2015, the US National Academy of Medicine created new diagnostic criteria for myalgic encephalomyelitis / chronic fatigue syndrome (“the IOM criteria”) to affirmatively diagnose ME through a core set of symptoms including post-exertional malaiseunrefreshing sleepcognitive dysfunction, and orthostatic intolerance.

While some clinicians and advocates believe the IOM Criteria allows for the diagnosis of mild patients and patients earlier in their illness course, others are concerned that these criteria may still be too broad, particularly if used to select human subjects for research. A survey of experts shows a strong preference for the Canadian Consensus Criteria for both research and clinical use, created by an international cohort of experts in the disease. We strongly recommend patients familiarize themselves with the following three criteria and the range of symptom presentations among mild, moderate and severe patients:

find a clinician

If you think you have ME, there are specialists around the world who can help you rule out other conditions, get an accurate diagnosis, and manage common comorbidities. Find a specialist near you using our global directory, crowdsourced from people with ME.

TREATMENTS & RESEARCH

While there are currently no approved treatments for ME, many patients can live a higher quality of life if they have access to a physician who can help them:

  • pace their activity
  • manage the symptoms of pain, unrefreshing sleep, and orthostatic intolerance
  • diagnose and treat common comorbidities

TREATMENT GUIDE

PATIENT FORUMS AND OTHER RESOURCES

participate in research

Enroll in a research study. Find one near you.

RESEARCH SUMMARY

A summary of the scientific research into ME over the past ten years. This is a powerful tool to share with your medical provider, and family and friends to educate them about the current research.

DISABILITY and Welfare RESOURCES

USA

UK

Students

Children and Young People

  •  Council for disabled children – “It’s important to us that you have access to the right information and support to give you the choice and control over decisions that affect you.”

FINANCIAL ASSISTANCE

USA
  • The AMMES financial crisis fund is intended to assist patients who find themselves unable to meet a critical need. These needs can include anything from making a rent payment to paying a bill, making a copay or any other out-of-pocket medical expense, or any need which is vital to well-being. Read more.

  • Miracle Flights provides travel assistance for children traveling for medical treatment and their parents / legal guardians / caregiver.  Miracle Flights assists economically disadvantaged families so call first to determine eligibility. Travel is provided to treatment facilities within the United States only.
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