Chronic Fatigue and ME/CFS

Content

• What it means when fatigue becomes chronic
• Chronic fatigue as a symptom versus ME/CFS as a diagnosis
• Common causes of chronic fatigue in older adults
• How clinicians evaluate chronic fatigue and ME/CFS
• Living with chronic fatigue or ME/CFS day to day
• How your care team and Understood Care advocates can help
• When to seek urgent or emergency care
• Frequently asked questions about chronic fatigue and ME/CFS
  

Chronic fatigue is real, and it is not all in your head

If you have been told “you are just getting older” or “your labs look fine, so it is probably in your head,” it can feel dismissive and lonely. In the video on this page, Debbie from Understood Care shares an important reminder: chronic fatigue is not simply a personality issue, and it is not a sign that you are lazy or imagining things. It can be a symptom of many health problems, and in some people it becomes its own diagnosis.

Medical organizations, including the National Institutes of Health (NIH), recognize myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) as a serious, chronic disease with neurological, immune, and energy metabolism changes. This diagnosis is based on clear clinical criteria, not mood or willpower.

For older adults, fatigue often has more than one cause. Medicines, heart or lung conditions, sleep problems, infections, mood changes, and ME/CFS itself can all contribute. If you are feeling chronic malaise, low energy, or “no gas in the tank,” there are real reasons to look for answers and support.

What chronic fatigue and ME/CFS mean

Chronic fatigue as a symptom

Fatigue is more than feeling sleepy. Chronic fatigue often feels like:

• Heavy, leaden limbs
• Needing to rest after very small activities
• Feeling flu like, even without a fever
• Waking up tired even after a full night of sleep

Fatigue can accompany many conditions, such as anemia, thyroid problems, diabetes, heart or lung disease, sleep apnea, depression, and side effects from medicine. It is important to treat chronic fatigue as a signal to investigate, not something to brush aside.

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)

ME/CFS is a specific diagnosis. It is more than “being tired all the time.”

• Substantial new fatigue lasting at least 6 months that is not explained by another illness and is not improved by rest
• Post exertional malaise (PEM): symptoms get significantly worse after physical, mental, or emotional effort, often hours later, and recovery can take days or longer
• Unrefreshing sleep, even if you spend many hours in bed
• At least one of the following:
  • Problems with memory, focus, or clear thinking
  • Feeling worse when sitting or standing upright (orthostatic intolerance), including lightheadedness or near fainting

ME/CFS can begin after an infection, a physical stressor such as surgery, or a major emotional event. In many cases, there is no single identifiable trigger.

There is no single blood test that confirms ME/CFS. Diagnosis is based on patterns of symptoms and careful exclusion of other causes.

Common causes of chronic fatigue in older adults

Debbie from Understood Care points out that, especially for older adults, chronic fatigue can be related to medicines, other health conditions, or ME/CFS itself. Often, more than one factor is involved.

Chronic fatigue as a symptom of other conditions

Your primary care clinician will usually start by considering common medical causes. These can include:

• Heart disease or heart failure
• Lung disease such as COPD
• Anemia or low iron
• Thyroid disorders
• Diabetes or low blood sugar
• Kidney or liver disease
• Sleep disorders, including sleep apnea or restless legs syndrome
• Depression, anxiety, or other mental health conditions
• Chronic infections or inflammatory conditions

It is important that any blood work, imaging, or other tests are chosen thoughtfully and tied to specific concerns, not ordered in a scattershot way. That is exactly what Debbie describes in the video: making sure tests match the issues you are actually experiencing.

Medicines that can contribute to fatigue

Many prescription and nonprescription medicines can cause or worsen fatigue, especially when several are used together in older adults. These can include:

• Certain blood pressure medicines
• Some heart rhythm or heart rate medicines
• Sedating antidepressants or antianxiety medicines
• Medicines for nerve pain or seizures
• Strong pain medicines such as opioids
• Antihistamines and sleep aids

Guidance for clinicians emphasizes reviewing the entire medication list, including supplements, to look for combinations that can impair alertness or blood pressure and increase fall risk.

If you feel more tired after a new medicine is started or after a dose increase, tell your clinician. Do not stop medicines on your own, but ask whether a slower dose change, a different medicine, or timing adjustments might help.

When chronic fatigue becomes ME/CFS

For some people, fatigue starts as part of an infection or another illness and does not go away, even after the original problem is resolved. When the pattern fits the criteria above and lasts at least six months, clinicians may diagnose ME/CFS.

ME/CFS can be mild, moderate, or very severe. Some people are still able to work part time or maintain limited activities. Others may be mostly homebound or bedbound and need significant support.

How clinicians evaluate chronic fatigue and ME/CFS

When to seek medical care

You should contact your clinician if:

• Fatigue lasts more than a few weeks and is not improving
• You find daily tasks like showering, cooking, or walking around your home much harder than before
• You feel unusually short of breath, dizzy, or lightheaded with routine activities
• You wake up just as tired as when you went to bed, day after day

Seek urgent or emergency care if fatigue comes on suddenly with chest pain, severe shortness of breath, confusion, or new weakness in the face, arm, or leg on one side.

History and exam

A thorough evaluation usually includes:

• Detailed history of your fatigue: when it started, how it feels, what makes it better or worse
• Review of activity patterns, sleep quality, mood, and stress
• Review of infections, surgeries, and major stressful events before symptoms started
• Full medication and supplement review
• Physical and neurologic exam, including vital signs sitting and standing

Your clinician may order blood, urine, or other tests to check for conditions such as anemia, thyroid disease, vitamin deficiencies, kidney or liver problems, and inflammation.

How ME/CFS is diagnosed

There is no single lab test for ME/CFS. Diagnosis is based on clinical criteria and on ruling out other explanations.

CDC and the National Academy of Medicine emphasize that ME/CFS is diagnosed when:

• The core features (substantial new fatigue, post exertional malaise, unrefreshing sleep) are present
• Symptoms have lasted at least 6 months
• At least one of the following is present: cognitive problems or orthostatic intolerance
• Other reasonable causes for the fatigue have been evaluated and addressed

For many people, this process takes time. It can be frustrating to wait for answers, especially when you feel unwell, but having a clear diagnosis can guide more appropriate management.

What you can ask about testing

Debbie highlights an important point in the video: tests should be directly related to the problems you describe. Helpful questions to bring to your visit include:

• “What conditions are you considering that could be causing my fatigue?”
• “Which specific tests are you ordering and why?”
• “Are there medicines I take that could be adding to my fatigue?”
• “If these tests are normal, what would the next steps be?”

An advocate from Understood Care can help you collect your records, prepare questions, and share updates with your primary care clinician and specialists so the workup is focused and coordinated.

Living with chronic fatigue or ME/CFS

Even when you and your clinician identify the main causes of your fatigue, symptoms may not disappear quickly. Management focuses on reducing symptom severity, protecting your energy, and improving quality of life. There is currently no cure or FDA approved treatment that reverses ME/CFS, but many strategies can help you live better with it.

Pacing and activity management

People with ME/CFS and other chronic fatigue conditions often describe a pattern of “push and crash”: doing too much on a better day, then spending days or weeks recovering. Experts recommend pacing to avoid large swings.

Pacing may include:

• Tracking your energy and symptoms in a simple log
• Breaking tasks into smaller steps with rest between
• Avoiding standing or sitting upright for long periods if this worsens symptoms
• Planning demanding activities at times of day when you usually feel your best

CDC and MedlinePlus both stress that balancing activity and rest can reduce post exertional malaise and help stabilize function over time.

Sleep strategies

Poor sleep and unrefreshing sleep are central problems in ME/CFS. Improving sleep may not eliminate fatigue, but it can help with mood, pain, and daytime function. Clinicians commonly suggest:

• Keeping a consistent sleep and wake time, even on weekends
• Creating a dark, quiet, comfortable sleep environment
• Limiting caffeine, large meals, alcohol, and screens near bedtime
• Working with your clinician if pain, restless legs, or frequent urination disrupt sleep

In some cases, sleep studies are recommended to check for sleep apnea or other disorders that can be treated directly.

Managing other symptoms

Depending on your individual pattern, your care plan may address:

• Pain management, including medicines, physical therapy, and gentle movement plans
• Headaches or migraines
• Gastrointestinal symptoms such as irritable bowel syndrome
• Dizziness and orthostatic intolerance, including strategies like compression garments, fluids, and certain medicines
• Mood symptoms such as depression or anxiety, using counseling and carefully chosen treatments

Authoritative reviews emphasize that treating the symptoms that bother you most first can be more effective and easier to tolerate.

Emotional health and support

Living with chronic fatigue can affect relationships, independence, and self image. It is common to feel grief, frustration, or worry about the future. Mental health conditions like depression and anxiety are also more common in ME/CFS and should be treated like any other complication.

Supportive steps can include:

• Talking with a counselor or therapist who understands chronic illness
• Joining support groups (online or local) for people with ME/CFS or chronic fatigue
• Sharing clear information about your condition with trusted family and friends so they understand your limits
• Setting small, realistic goals and celebrating progress

How Understood Care advocates can help

Chronic fatigue and ME/CFS often require input from several clinicians over time. Coordinating care, managing appointments, and keeping track of recommendations can be especially difficult when you already feel exhausted.

Understood Care advocates can support you by:

Preparing for appointments

Advocates can help you:

• List your most important symptoms and questions
• Gather medication lists and prior test results
• Prioritize topics so the visit focuses on what matters most
• Clarify what your clinician is looking for when ordering tests

You can learn more about this kind of support on Understood Care’s Appointments page at understoodcare.com/care-types/appointments.

Coordinating your care team

If you see primary care, cardiology, pulmonology, neurology, rheumatology, sleep medicine, or mental health providers, coordination is crucial.

Advocates can:

• Share updates and summaries with your clinicians with your permission
• Track referrals, follow up studies, and therapy recommendations
• Help you understand how advice from different clinicians fits together

The Care Coordination service at understoodcare.com/care-types/care-coordination is designed to keep everyone on the same page.

Supporting long term, complex conditions

Many people with ME/CFS also live with other chronic conditions. Understood Care’s Chronic Care services at understoodcare.com/care-types/chronic-care can help you:

• Align visits and treatments across conditions
• Review your overall care plan in plain language
• Identify when new symptoms need attention

When to seek urgent or emergency care

Chronic fatigue and ME/CFS can be very limiting, but they are usually managed in outpatient care. However, certain symptoms deserve immediate attention. Call emergency services or seek urgent care right away if you notice:

• New chest pain, pressure, or tightness, especially with shortness of breath
• Sudden weakness, numbness, or trouble speaking
• Confusion, trouble staying awake, or sudden severe headache
• Shortness of breath at rest or bluish lips or fingertips
• New, fast spreading rash with fever

Also contact your clinician promptly if:

• Your fatigue suddenly worsens over days without a clear reason
• You cannot maintain usual nutrition or hydration because you are too tired to eat or drink
• You notice new palpitations, near fainting, or blackouts

Frequently asked questions about chronic fatigue and ME/CFS

• What is the difference between chronic fatigue and chronic fatigue syndrome (ME/CFS)?
  Chronic fatigue is a symptom that can occur in many conditions. ME/CFS is a specific diagnosis that requires long lasting, life limiting fatigue, post exertional malaise, unrefreshing sleep, and either thinking problems or orthostatic intolerance, after other causes have been ruled out.CDC+2Mayo Clinic+2
• How is chronic fatigue or ME/CFS diagnosed?
  There is no single blood test. Clinicians use your history, physical exam, and targeted tests to rule out other conditions. ME/CFS is diagnosed when the core criteria are met for at least 6 months and no better explanation is found, following guidelines from the CDC and National Academy of Medicine.CDC+2CDC+2
• What causes chronic fatigue in older adults?
  In older adults, fatigue commonly involves several factors, such as heart or lung disease, anemia, thyroid problems, sleep apnea, mood changes, and medicines that cause drowsiness or low blood pressure. ME/CFS can also occur in older adults, although it is often underdiagnosed.CDC+2CDC+2
• Is chronic fatigue syndrome the same as long COVID?
  No. Long COVID is a broader term for ongoing symptoms after COVID 19 infection. Some people with long COVID meet diagnostic criteria for ME/CFS, while others have different patterns of illness. Research shows significant overlap, and experts are studying both conditions together to better understand their causes and treatment.CDC+1
• Can chronic fatigue or ME/CFS be cured?
  At this time there is no known cure or approved treatment that eliminates ME/CFS. However, many people can improve their quality of life with pacing, symptom focused treatments, sleep strategies, and coordinated care. Some experience partial recovery or periods of better function, while others remain significantly limited.Cleveland Clinic+2MedlinePlus+2
• What treatments help manage chronic fatigue and ME/CFS?
  Treatment is individualized. It may include pacing and activity management, sleep interventions, pain management, strategies for dizziness or orthostatic intolerance, counseling, and careful adjustment of medicines. The goal is to reduce symptom severity, prevent crashes, and support daily functioning, not to push you to “power through” your limits.CDC+2mecfs.rti.org+2
• When should I see a specialist for chronic fatigue?
  You should consider specialist referral if your primary care clinician has ruled out common causes, fatigue remains severe and disabling, or ME/CFS is suspected. Specialists in neurology, rheumatology, sleep medicine, or clinics familiar with ME/CFS can help confirm diagnosis and refine management.CDC+1
• How can a care advocate help if I have chronic fatigue or ME/CFS?
  A care advocate can help you prepare for visits, keep track of tests and referrals, communicate with multiple clinicians, and translate complex medical information into clear next steps. Understood Care advocates can also support caregivers and help coordinate services at home so you are not managing all of it on your own.

References

• Mayo Clinic. Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) overview, symptoms, causes, and risk factors. Available at: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490 Mayo Clinic
• MedlinePlus. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. U.S. National Library of Medicine. Available at: https://medlineplus.gov/myalgicencephalomyelitischronicfatiguesyndrome.html MedlinePlus
• National Institutes of Health. About ME/CFS. Available at: https://www.nih.gov/advancing-mecfs-research/about-mecfs National Institutes of Health (NIH)
• Centers for Disease Control and Prevention. ME/CFS Basics. Available at: https://www.cdc.gov/me-cfs/about/index.html CDC
• Centers for Disease Control and Prevention. Symptoms of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Available at: https://www.cdc.gov/me-cfs/signs-symptoms/index.html CDC
• Centers for Disease Control and Prevention. Clinical Overview of ME/CFS for Healthcare Providers. Available at: https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html CDC
• Centers for Disease Control and Prevention. Caring for Patients with ME/CFS. Available at: https://www.cdc.gov/me-cfs/hcp/clinical-care/index.html CDC
• Cleveland Clinic. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Available at: https://my.clevelandclinic.org/health/diseases/17720-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs Cleveland Clinic
• Bateman L, Bested AC, Bonilla HF, et al. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clinic Proceedings. 2021;96(11):2861–2878. Accessible summary PDF: https://mecfs.rti.org/resources/docs/MECFS_Essentials.pdf mecfs.rti.org
• ME/CFS Primer for Clinical Practitioners. Massachusetts ME/CFS & FM Association and International Association for CFS/ME. Available at: https://massmecfs.org/wp-content/uploads/2024/06/ME-CFS-Primer-for-Clinical-Practitioners.pdf Massachusetts ME/CFS & FM
• Understood Care. Care Coordination. Available at: https://understoodcare.com/care-types/care-coordination UnderstoodCare
• Understood Care. Appointments. Available at: https://understoodcare.com/care-types/appointments UnderstoodCare
• Understood Care. Chronic Care. Available at: https://understoodcare.com/care-types/chronic-care UnderstoodCare

This content is for education only and does not replace professional medical advice. If you have chest pain, trouble breathing, sudden weakness, or new confusion, call emergency services right away.