Myalgic encephalomyelitis, also referred to as chronic fatigue syndrome (ME/CFS) is a complex and chronic disease that can have a serious impact on one’s quality of life. Patients can experience a variety of symptoms ranging in intensity from mild to extremely severe. While ME/CFS is four times more likely to affect women than men, this chronic condition strikes people from every age, racial, ethnic, and socioeconomic group. There are multiple ways to diagnose ME/CFS — you can assess whether to talk to a medical provider using this checklist:
- Extreme fatigue or exhaustion that has lasted for 6 or more consecutive months and is not due to ongoing exertion or other medical conditions (these other conditions need to be ruled out by your doctor after diagnostic tests have been conducted)
- Feeling physically drained and sick even after mild activity (e.g., walking up stairs)
- Minimum exercise makes you physically exhausted
- Feeling sore the next day after activities that are not strenuous (e.g., grocery shopping)
- Having a dead, heavy feeling after starting to exercise
- Even after a night of sleep you wake feeling unrefreshed, like you haven’t slept at all
- Feeling mentally tired and exhausted after the slightest effort
- Slowness of thought
- Muscle weakness
- Difficulty finding the right word to say or expressing thoughts
Don’t Delay a Diagnosis
- Begin with your primary care provider. Finding a doctor who is knowledgeable about ME/CFS can be challenging. There are a small number of ME/CFS specialists in the U.S., but many patients do their best to establish a good working relationship with a primary care provider and one or more specialists to manage their specific issues.
- While educational resources for medical practitioners have improved significantly in recent years, many providers remain unaware of the scope and true impact of the disease. If you already have a good relationship with your provider and they are not familiar with ME/CFS, invite them to visit our resource page that has the most recent information on ME/CFS for healthcare professionals. Additional information can be found on the CDC ME/CFS page and the ME/CFS Clinician Coalition.
Preparing For Your Visit
Effective communication with your health care provider is important.
- Focus on the most problematic symptoms first, specifically the experiences that are hindering your quality of life the most. Write down these symptoms and your questions and bring with you to the appointment as a guide for the conversation.
- Give specific examples when describing your symptoms. Try to describe a specific type of activity that is impacted by your symptom and how often it happens. This will help your provider to understand the symptom and its significance in your life, and to identify potential treatments.
- Ask questions. Be sure you understand the purpose and side effects of any recommended prescriptions or supplements, in particular.
- Take notes during the appointment. It’s is very easy to forget the information and advice, so you may want to bring someone with you to help take notes.
- If you feel that your concerns are not being addressed or that the provider is dismissive of your symptoms, remember that you are your own best advocate for your health. Never be afraid to find a new provider if you don’t feel that you are being listened to.
While the Food and Drug Administration has not approved any treatments for ME/CFS, there is hope. The degree to which your life is impacted by ME/CFS depends on a number of things, including the severity of your disease. Individuals with ME/CFS learn over time what works best for them and many rely on the robust community of patients and advocates that share resources, information, and support.