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Patients

Amy’s 12-year-old daughter is severely ill with ME.

What is ME?

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

Learn more about ME


Get diagnosed and find treatment

Diagnosis

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 malaise, unrefreshing sleepcognitive dysfunction, and orthostatic intolerance.

While some clinicians and advocates believe the IOM criteria allow 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. We strongly recommend patients familiarize themselves with the following three criteria and the range of symptom presentations among mild, moderate and severe patients:

In addition to post-exertional malaise, unrefreshing sleep, cognitive dysfunction and/or orthostatic intolerance, many patients 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
Finding a doctor

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 comorbdities. Find a specialist near you using our global directory, crowdsourced from people with ME.

Treating ME

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

There are also numerous peer-to-peer and patient self-help resources in the form of online guides and forums. View our curated list of peer-to-peer treatment resources.


Learn more about ME

About ME [USA]

I have ME. What’s Next?

#MEAction handout on the Diagnosis & Management of ME (2018)

ME in the news

Check out our curated list of in-depth features, TV reports and seminal articles and essay on myalgic encephalomyelitis and chronic fatigue syndrome.

Films, Books, Music About ME

From in-depth investigative journalism to personal storytelling, these films, books, podcasts, and other media are a great way to learn more about the experience of living with ME

#MEAction ME/CFS Research Summary (2017)


Celebrating a #MillionsMissing visibility action

Find Community

We are so much stronger together. Join the online community of people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome to share experiences about treatment and doctors, find support from people who are going through similar struggles, and share ideas for changing our world. 
Find support and fellowship. Join a Facebook Group.

Living With MEPregnancy & Parenting with M.E. | Seniors | Men | Severe ME | 25 and Under | LGBTQ | #MEAction En Español | BedFest (community of artists with ME) | View all affinity groups on Facebook

#MEAction USA | #MEAction California | #MEAction New York | #MEAction Florida#MEAction Canada | #MEAction UK |#MEAction Scotland | #MEAction Wales | #MEAction Northern Ireland | #MEAction London | #MEAction Network Australia | #MEAction New Zealand | View all local groups on Facebook

Connect with our Community Organizer:

Make an appointment with our Community Organizer, Ben HsuBorger, to learn how to get connected to our community, find resources, discuss strategy for your advocacy work, and learn how #MEAction can help amplify your efforts. Sign up for a 15-minute appointment here.


Take Action

Protesting at a #MillionsMissing rally

There are so many ways to get involved in advocacy, whether it’s joining our annual #MillionsMissing events in May, supporting our Congressional or UK Parliament outreach, or by launching a petition to protest CBT/GET, or hosting an event or fundraiser.

  • Connect with other advocates. Join the conversation with fellow advocates who are active in your area. | Make an appointment to talk to our community organizer. | Volunteer your skills – fill out this form.
  • Engage in our projects. Contribute to MEpedia – a crowd-sourced encyclopedia about ME. |
    Connect with other artists through our BedFest and Voices projects –  learn more.
  • Participate in research trials. Check out our list of research trials that are enrolling patients.
  • Stay informed. Sign up for our newsletter to receive latest news on advocacy, policy and research.

More resources

Treatment Resources

While there are no FDA-approved treatments for ME, there are many off-label treatment options that people with ME have found helpful. Learn from other patients in the online forums below.


Disability

USA


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.