How To - Diagnosing Chronic Fatigue Syndrome (ME/CFS)

Diagnostic issues have plagued chronic fatigue syndrome (ME/CFS) for decades. Because like fibromyalgia, ME/CFS is diagnosed using symptoms (and by ruling out other diseases)

Over time the criteria have ranged from the simplistic (Oxford) to the vague (Fukuda) to the complex (Canadian Consensus Criteria and International Consensus Criteria).

Diagnostic Algorithm From Institute of Medicine (IOM) Report (2015)

A 2015 NIH funded report from the prestigious Institute of Medicine providing new criteria which has, for the time being at least, changed all that. Recognizing the primary care doctors need to be able to easily assess ME/CFS patients it came up with an up to date but simple diagnostic guideline for ME/CFS.

The new criteria focuses on four symptoms: fatigue, postexertional malaise, sleep issues and cognition and/or orthostatic intolerance.

• Proposed-Diagnostic-Criteria (HTML)
• Diagnostic Algorithm (HTML)

Check out Dr. Alison Bested's "How to Make the Diagnosis" Primer for physicians and Health Rising's "Do I Have Chronic Fatigue Syndrome (ME/CFS)? page.


A Little History

The 1994 Fukuda research definition produced by the CDC masqueraded as a clinical definition for decades. The Canadian and International Consensus Criteria produced by ME/CFS experts highlighted post-exertional malaise as the key symptom in ME/CFS but were too cumbersome and complex to get traction in the mainstream medical community.

In 2015, after a year of work, the ME/CFS experts in an Institute of Medicine report produced a definition that was both accurate and easy to understand.

Older Criteria

• Canadian Consensus Criteria (2003) - older, more complex diagnostic criteria created by ME/CFS experts. This seminal work brought post-exertional malaise to the fore and paved the way for that symptom to gain traction. Still provides excellent overview of ME/CFS symptoms and characteristics
• International Consensus Criteria (2011) - updated version of Canadian Consensus Criteria created by 25 ME/CFS experts. Removes six-month waiting period for diagnosis. Highlights postexertional neuroimmune exhaustion (PENE). Identifies neurological impairments, neurocognitive problems, pain, sleep, etc. issues in ME.
• The Fukuda Criteria (1994) - Developed by the CDC in conjunction with a group of ME/CFS experts, the Fukuda criteria was the only research definition used for ME/CFS for over twenty years. that ended up being used as a clinical definition as well for many years. Widely criticized for not requiring post-exertional malaise, the Fukuda definition morphed into a clinical definition as well. The Fukuda definition is no longer considered an acceptable research or clinical definition.
• Oxford Criteria (1991) - is a very broad criteria produced by a group of United Kingdom psychiatrists which has been commonly used in UK and European CBT/GET studies. The Oxford criteria were debunked in the Institute of Medicine report because of their tendency to allow people with depression (but not ME/CFS) to be classified as having ME/CFS. The criteria have been called severely “flawed", were suspected of causing “harm". The Agency for Healthcare Research and Quality had so little faith in the Oxford criteria that they removed it from their CBT/GET study analyses. When they did so they found very little evidence for CBT/GET efficacy in ME/CFS).
• CDC Website - provides very basic overview of ME/CFS diagnosis - https://www.cdc.gov/me-cfs/symptoms-diagnosis/diagnosis.html

Symptoms

• Core and Additional Symptoms of Chronic Fatigue Syndrome - from the groundbreaking 2015 Institute of Medicine (now the National Academy of Medicine) report on Chronic Fatigue Syndrome (ME/CFS).
• Katrina Berne's ME/CFS Symptom Checklist - the most comprehensive symptom checklist for chronic fatigue syndrome
• CDC Website - basic overview of ME/CFS symptoms; features post-exertional malaise
• In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms - vivid portrayals of ME/CFS and FM symptoms
• Video's explaining ME/CFS Symptoms

Technical Papers

• DePaul Symptom Questionnaire - Symptom questionnaire incorporating frequency and severity often used in ME/CFS studies; developed by Leonard Jason PhD and the Chronic Fatigue Syndrome Project at DePaul University, Chicago.
• Myalgic Encephalomyelitis - Leonard Jason PhD makes the case for a simple core definition for Myalgic Encephalomyelitis (ME/CFS) followed by subtyping.

Comorbid Diseases

Some people with chronic fatigue syndrome (ME/CFS) also have one or more comorbid diseases that commonly occur with it.

The list of possible comorbid diseases is a long one and includes

• Fibromyalgia (FM) - FM is very common in ME/CFS and vice versa. Some doctors believe ME/CFS and FM are simply two diseases on the opposite ends of a fatigue/pain spectrum. Like ME/CFS the diagnostic criteria for FM have been a source of controversy. Check out the Mayo's clinic take on FM diagnosis here.
• Hypothyroid - Dr. Bateman reports that low thyroid (hypothyroid) occurs in an amazing 30% of her ME/CFS/FM patients. A 2018 Dutch study suggests that a particularly severe kind of hypothyroidism call Non-Thyroid-Illness-Syndrome (NTIS) commonly found in sepsis, starvation and other serious conditions may be found in some people with ME/CFS as well. Find out more about the hypothyroidism in ME/CFS/FM here and NTIS in ME/CFS here.
• Migraine - Migraines are one of the most common pain disorders and many people have them without knowing it. Find out if you might be experiencing migraines in Health Rising's Diagnosing Pain Disorders Resource Section
• Irritable bowel syndrome - experiencing cramping, bloating, diarrhea or constipation? You might have IBS - Check out IBS diagnostic criteria here.
• Postural orthostatic tachycardia syndrome (POTS) - very rapid heartbeats upon standing that reduce blood flows to the brain causing dizziness, fatigue, etc. may be common in ME/CFS. Check out a home test produced by an ME/CFS doctor here.
• Other forms of orthostatic intolerance - Having problems standing? Check out more home tests for orthostatic intolerance here.
• Postural hyperventilation - perhaps 20% of people with ME/CFS may hyperventilate when they stand. Check out a home test for "postural hypocapnic) hyperventilation here
• Low blood volume - some people with ME/CFS can have staggeringly low blood volumes. Check out Daxor's blood volume test here.
• Myofascial Pain Syndrome (MPS) - over view from Mayo Clinic
• Temporomandibular Joint Syndrome (TMJ) - Medline plus overview from the NIH
• Gynecological Disorders - Two CDC studies found surprisingly high rates of gynecological disorders in ME/CFS - High Rates of Gynecological Disorders Implicated in Chronic Fatigue Syndrome
• Ehlers Danlos Syndrome (EDS) - Are you highly flexible? If so you might have EDS. Check out a self-test here.
• Mast Cell Activation Syndrome - Check out Health Rising's Mast Cell Activation Syndrome Resource Page
• Small Fiber Neuropathy (SFN) - SFN is common in fibromyalgia and recent doctor reports suggest it is just as common in ME/CFS as well. Find out how to diagnose it in Health Rising's Small Fiber Neuropathy Resource section
• Depression and Anxiety- The risks of depression and anxiety rise greatly if you have a chronic illness. Some symptoms of depression such as fatigue are similar to those found in ME/CFS but others are different (no post-exertional malaise in depression) and the two diseases are easily differentiated by knowledgeable doctors. See How to Prove You Have ME/CFS and are Not Just Depressed for ways to differentiate the two. Check out some self-tests for depression/anxiety here. Check out WebMd's take on diagnosing depression here.
• Interstitial Cystitis
• Raynaud’s Phenomenon
• Prolapsed Mitral Valve
• Allergies

ME/CFS Mimics

• Thyroid disease - hypothyroidism is reportedly common in ME/CFS but undiagnosed and untreated thyroid disease can mimic the symptoms of ME/CFS. Find out more about the hypothyroidism in ME/CFS/FM here.
• Lyme Disease - Can have similar symptoms to ME/CFS. Diagnostic controversies exist however. Check out the CDC's approach to Lyme diagnosis here.
• Sleep disorders - sleep apnea or other sleep disorders often produce fatigue and concentration problems. Sleep apnea is greatly underdiagnosed - Preventing Sleep Apnea Therapy was Miracle Cure for Me
• Depression - often causes fatigue but does not produce the severe post-exertional malaise found in ME/CFS. People with ME/CFS do not have increased rates of mood illness prior to becoming ill. See How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed
• Sjogren's Syndrome (SS) - SS is a disease mimic which seems to be particularly prevalent in POTS. Only a lip biopsy can be definitive - check out Lauren Stiles story here to find out why.
• Cerebral Spinal Fluid Leak - Cerebral spinal fluid leaks can reproduce many of the symptoms in ME/CFS/FM, are often undiagnosed, and, surprise, can sometimes be easily cured. Check out one person with ME/CFS who was diagnosed with having a cerebral spinal fluid leak.
• Craniocervical Instability - Craniocervical instability occurs when the ligament attaching the neck to the head becomes loosened causing the spine to intrude on the brainstem resulting in dysautonomia and immune system problems. Check out one person who's severe ME/CFS, POTS and MCAS disappeared after being treated for cranialcervical instability.
• Inborn Errors of Metabolism (IEM) - are genetic mutations that disrupt the metabolism causing fatigue and similar symptoms. IEM's are difficult to get diagnosed and can take decades to manifest themselves. Two researchers have found preliminary evidence of IEM's in ME/CFS.
• Lupus
• Anemia
• Gluten Intolerance/Celiac disease - celiac disease
• Early stages of multiple sclerosis
• Dunbar's Syndrome