Dr. Ric Arseneau (biography and disclosures)
Disclosure: Dr. Arseneau is the Director of Program Planning and a clinician at the Complex Chronic Diseases Program (CCDP). Mitigating Potential Bias: Recommendations are consistent with current practice patterns.
What I did before
Chronic Fatigue Syndrome (CFS) – also known as Myalgic Encephalomyelitis (ME) – is a common clinical condition. Yet, it is under- recognized and diagnosed. Clinicians often misconstrue the condition as a diagnosis of exclusion. An estimated 84–91% of patients with the condition remain undiagnosed. (1) Physician misconceptions about the disease abound. Despite much research in the area, it is not uncommon to hear patients say, “My doctor doesn’t believe in it.” Luckily, medicine is not a question of faith but science.
As a general internist, “fatigue,” is a common reason for referral to my practice. My approach has been to conduct an appropriate history, physical examination, and limited medical work-up including age-appropriate malignancy screening, OSA screen, and depression screen. Patients with CFS usually present “classically,” and are easily diagnosed once the pattern is recognized. Most of my CFS patients leave the office with a provisional diagnosis of CFS even before their diagnostic workup is complete; remember, it is not a diagnosis of exclusion. Of course, it is important to rule out common (e.g., anemia, hypothyroidism) and sinister (e.g., malignancy) conditions, however this does not usually require an extensive workup.
The condition can co-exist with other fatiguing conditions (e.g., RA, SLE). It is often accompanied by the other so-called Central Sensitivity Syndromes (e.g. fibromyalgia, irritable bowel syndrome) that also explain many of their symptoms.
In taking the history, I started by letting the patient tell me their story – which is particularly important in this population – given their usual prior encounters with health care professionals. Then I asked targeted questions to rule out important differential diagnoses (e.g., unexplained weight loss). Finally, I went over the diagnostic criteria for ME/CFS with a to a printed checklist of the 2003 Canadian Clinical Working Case Definition (2) (see below). Patients felt reassured and validated, especially when asked questions about symptoms they previously concealed from physicians for fear of being judged (e.g., Are you sensitive to light, noise, foods, or chemicals?).
ME/CFS: 2003 Canadian Clinical Working Case Definition
- Pathological Fatigue: A significant degree of new onset, unexplained, persistent or recurrent physical and/or mental fatigue that substantially reduces activity levels and which is not the result of ongoing exertion and is not relieved by rest.
- Post-exertional Malaise & Worsening of Symptoms: Mild exertion or even normal activity is followed by malaise: the loss of physical and mental stamina and/or worsening of other symptoms. Recovery is delayed, taking more than 24 hours.
- Sleep Dysfunction: Sleep is un-refreshing: disturbed quantity – daytime hypersomnia or nighttime insomnia and/or disturbed rhythm – day/night reversal. Rarely, there is no sleep problem.
- Pain: Pain is widespread, migratory or localized: myalgia; arthralgia (without signs of inflammation); and/or headache – a new type, pattern or severity. Rarely, there is no pain.
- Neurocognitive Manifestations: (2 or more) Impaired concentration, short-term memory or word retrieval; confusion; disorientation; slowness of thought; hypersensitivity to light, noise or emotional overload; muscle weakness; ataxia.
- At least one symptom from two of the following categories:
- Autonomic Manifestations
- Orthostatic intolerance: neurally mediated hypotension (NMH); postural orthostatic tachycardia (POTS); light headedness; vertigo, extreme pallor; palpitations; exertional dyspnea; urinary frequency and bladder dysfunction; irritable bowel syndrome (IBS); nausea
- Neuroendocrine Manifestations
- Low body temperature; cold extremities; sweating; intolerance to heat or cold; recurrent feelings of feverishness; reduced tolerance for stress; other symptoms worsen with stress; weight change; abnormal appetite
- Immune Manifestations: recurrent flu-like symptoms; sore throats; tender lymph nodes; fevers; new sensitivities to food, medicines, odors or chemicals
- The illness has persisted for at least 6 months.
What changed my practice
The US NIH (National Institute of Health), CDC (Centre for Disease Control), among other US agencies, asked the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS. (1). Starting with the 2003 Canadian Clinical Working Case Definition, the committee proposes new diagnostic criteria (see below) that will facilitate timely diagnosis and care, and enhance understanding among health care providers and the public. The criteria, based on an expert analysis of the evidence, are streamlined for practical use in the clinical setting. The IOM committee also recommends that the name of the condition be changed—from ME/CFS to systemic exertion intolerance disease (SEID)—to more accurately capture the central characteristics, seriousness, and often-devastating consequences of the illness.
The primary message of this report is that ME/CFS/SEID is a “serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real.’ It is not appropriate to dismiss these patients by saying, ‘I am chronically fatigued, too’.” Their aim is to reposition ME/CFS/SEID as a legitimate disease occurring in both children and adults that should be properly diagnosed and treated.
The committee thought the term “chronic fatigue syndrome” gives patients, families, and doctors a negative perception of the illness by trivializing the condition and promoting a misunderstanding of the illness. Also, “myalgic encephalomyelitis,” is not an appropriate term given the lack of evidence of brain inflammation and the less prominent role of myalgia in these patients. They recommend the name systemic exertion intolerance disease (SEID) because it captures a central characteristic of this disease: the fact that any kind of exertion (physical, cognitive, or emotional) can exacerbate symptoms.
Diagnostic Criteria for ME/CFS/SEID
Diagnosis requires that the patient have the following three symptoms:
- A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
- Post-exertional malaise,* and
- Unrefreshing sleep*
At least one of the two following manifestations is also required:
- Cognitive impairment* or
- Orthostatic intolerance
* Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS/SEID should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
What I do now
The most important impact of the IOM report is that it legitimizes ME/CFS/SEID as a chronic disabling condition; the report highlights the inadequate research funding given the size of the population affected, and it brought about significant attention in major medical journals. It is too early to tell whether the proposed criteria will be widely adopted given the lack of international input and the exclusion of experts in the field in developing the criteria. As for the new name, SEID, the response from patients and advocacy groups, so far, has been less than enthusiastic.
Physicians should diagnose ME/CFS/SEID if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. I continue to use the 2003 Canadian Clinical Working Case Definition as a clinical tool as it captures many more symptoms of the condition. Given that the IOM criteria are simply a subset of the 2003 Canadian Clinical Working Case Definition, it is simple to document if the patient’s diagnosis of CFS is based on one or both set of criteria (download clinical tool) (3).
I also provide patients with a link to the report page for education (1): the information is presented in different formats at different levels of complexity. I also quote the report in patient disability and insurance reports given that these bodies have a vested interest in construing the condition as “not real” or psychological, and denying the very real and devastating consequences of living with this illness.
Patients with ME/CFS/SEID can be referred to the Complex Chronic Diseases Program (CCDP) at BC Women’s Hospital. This is a multidisciplinary program for patients with ME/CFS/SEID as well as fibromyalgia, multiple chemical sensitivities, and symptoms attributed to “chronic Lyme disease”. Here is a link to the referral page for the program (4).
Given the demand for the program and the long wait list, here are some suggestions for clinicians:
All of the CCDP protocols, patient handouts, and other resources for clinicians can be found here (5).
- Patient education about their condition: CCDP patient resources (6).
- Patient education regarding pacing and energy envelope: CCDP patient resources (6).
- Improve patient sleep: CCDP Sleep Protocol (7).
- Treatment of pain: CCDP Pain Protocol (8).
References and/or Additional reading
- Institute of Medicine Report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness http://www.iom.edu/Reports/2015/ME-CFS.aspx
- Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, et al. Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. J Chronic Fatigue Syndr. 2003;11:7-115. (Request with CPSBC)
- Diagnostic Criteria Tool
- Referral to Complex Chronic Diseases Program
- CCDP Clinician Resources
- CCDP Patient Resources
- CCDP Sleep Protocol
- CCDP Pain Protocol