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For Patients

Celebrating a #MillionsMissing visibility action

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. 

Community

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)

See the rest of our groups based on location, affinity and interest: View all Facebook Groups


Advocacy

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.
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Diagnosis

Frequently used diagnostic criteria include the Canadian Consensus Criteria and the International Consensus Criteria.

If you cannot see an ME specialist, you may consider sharing these resources with your doctor – many of whom are uninformed about ME.  


Doctors

If you think you have ME, there are specialists around the world who can help you rule out other conditions and get an accurate diagnosis. Find a specialist near you using our global directory crowdsourced from people with ME.
(Click here to view ME/CFS specialists in document form.)

While there are currently no FDA-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

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

  • 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.