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:
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 malaise, unrefreshing sleep, cognitive 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 for diagnosing ME and treating it based on laboratory reports and treatments commonly used by ME specialists.
- Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verrillo
PATIENT FORUMS AND OTHER RESOURCES
- Phoenix Rising – The largest ME/CFS discussion forum on the web, covering a wide range of topics from advocacy to treatment to patient support.
- Health Rising – blog and forum discussing research and patient stories re: response to a variety of treatments.
- Science for ME – “Where science and the ME/CFS Community Meet
- The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) is a good place to start to think about treatment.
- My Patient Match – A forum and tool to track symptoms and treatments, it matches you with patients who have similar symptoms to you.
participate in research
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
- The American ME and CFS Society have a comprehensive list of resources for applying for disability.
- Sleepy Girl Guide to applying for Social Security Disability
- The Massachusetts CFIDS/ME & FM Disability Handbook – information about SSDI and SSI
- The NeuroCognitive Research Institute offers neuroimaging assessments to prove impaired cognitive functioning for disability claims.
- Financial help if you’re disabled – UK Government
- Citizens Advice – We give people the knowledge and confidence they need to find their way forward – whoever they are, and whatever their problem. Our network of charities offers confidential advice online, over the phone, and in person, for free.
- Charitable grants for ill or disabled people – Money Advice Service
- Disabled Students Allowance – Help if you’re a student with a learning difficulty, health problem or disability
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.”
- 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.