What We Need to Know About Chronic Fatigue
New ways of thinking about and addressing a misunderstood condition.
Posted August 10, 2020 | Reviewed by Kaja Perina
Complaints of chronic fatigue are commonly expressed by patients to both their physicians and mental health therapists. It is a rare day when one of my patients does not report that she has trouble getting out of bed or feels that her sleep did not restore her sense of energy. Beyond their chronic fatigue and sleep disturbance, many patients also report migrating aches and pains that are often conveyed as upper neck muscle tension and headaches. Most patients with these symptoms also report an impaired short-term memory that many describe as “brain fog,” a delayed or slowed process of thinking. A subgroup note that they have trouble recovering from minor exercise. “Even a trip to Costco makes me feel exhausted and overwhelmed,” said one patient. These later symptoms are referred to as myalgic encephalomyelitis (ME).
The Scope of the Problem
Many people suffer from ME/CFS; according to an analysis of millions of claims processed by major insurance companies, published in 2019 by Ashley R. Valdez et al. The researchers found that the prevalence of this disorder is at least 1.7 million people in the United States and as high as 3.4 million sufferers. Others, such as the CDC, set the prevalence between about 1 million to 2.5 million. Whichever estimate we accept, this means there are many people with this disorder, and most actively seek help.
Valdez et al. also found that the costs of this diagnosis are extremely high: nearly $31,000 per year, compared to about $8,000 for the average person and even higher than the average cost for patients with multiple sclerosis, or about $22,000 year.
Validation of ME/CFS as a Problem
In 2015, the Centers for Disease Control and Prevention (CDC) published diagnostic criteria for ME/CFS provided by the National Academy of Medicine (formerly the Institute of Medicine). At long last, the identification of this syndrome initially offered ME/CFS sufferers some solace. Often told that their complaints were phantom, the official recognition of ME/CFS as a real disease was viewed as a validating step toward recognition and better understanding of this medical problem. This official recognition directed federal money for research and throughout the country, sophisticated basic science laboratories expanded their search for a cause and a cure of ME/CFS.
Despite intense efforts by many researchers, disappointingly little progress has been made. No medications or treatments have been approved for the treatment of ME/CFS and most patients feel abandoned by establishment medicine.
ME/CFS Patients Do Not Fit in Specialty “Boxes”—Although Attempts Were Made
Part of the problem is that in all organized medicine, ME/CFS patients have no natural “home.” For some time, specialists in infectious disease welcomed ME/CFS patients; there was a belief that elevated titers of the Epstein Barr virus correlated with CFS. However, it soon became clear that anti-viral and antibiotic medications were not helpful. During another period, chronic fatigue was viewed as a manifestation of low thyroid (hypothyroidism) but since so few CFS patients respond to thyroid augmentation, enthusiasm for this approach also has waned.
Because ME/CFS patients have many physical symptoms atop their chronic fatigue, they scrambled to other medical specialists. Often their joint pain was emphasized, and rheumatologists diagnosed them with rheumatoid arthritis or a related condition. Many people with ME/CFS received the diagnosis of fibromyalgia and benefited to some degree from approved therapies for that disorder. Others were treated for headache by neurologists or for pelvic pain by gynecologists. Many received and benefited from antidepressant medications given to them by a psychiatrist or a primary care physician. While some of these interventions help with pain, none of them relieved the burden of brain fog or chronic fatigue. Too many patients were prescribed opioids for non-specific chronic pain and this large group of patients represents an important component of the opioids crisis the country now faces.
With failure after failure, ME/CFS patients felt increasingly alienated from the established medical community. Understandably, many turned to alternative treatments that had little scientific foundation. A small number of unscrupulous clinicians and researchers gave the entire field a black eye with fake remedies, and to this day most doctors are not enthusiastic about treating ME/CFS patients. In general, doctors do not like to treat conditions where an effective fix or a compassionate therapeutic is not available.
Is This Disorder All “In the Head”?
Perhaps the central tension between doctors and their patients was whether ME/CFS was a mental health condition. Patients with the condition strongly reject the inference that their very real physical symptoms were “only in their head.” Many doctors felt that referral to a psychiatrist was the only way to help patients learn to cope with their incurable but non-fatal condition.
Given this tension, it may seem odd that I, a psychiatrist, became so interested in ME/CFS. Regarding the ongoing conflict as to whether the condition is psychiatric, I am sympathetic to both sides of the argument. Beyond question, ME/CFS is a true medical condition. The suffering is real. As with other legitimate diseases, the symptoms are phenomenological and look similar across cultures. Furthermore, ME/CFS is not a pure psychological condition in that it does not result from childhood trauma or the subconscious need for the patient to remain ill to gain attention or sympathy from others. It does, however, fall within the domain of psychiatry because evidence supports that some medications that modulate brain chemistry are effective in the treatment of CFS/ME.
My CFS Study
Bolstered by previous studies and my interest in ADHD and cognitive psychiatry, I conducted a study on 26 subjects with CFS. Half the subjects were given lisdexamfetamine (LDX) and the other half were given placebo. LDX is an FDA approved medication for ADHD throughout the life span and Binge Eating disorder. The group treated with LDX reported a marked improvement in their cognitive testing and their fatigue. Unexpectedly, LDX treated patients were also identified to have improvement with their chronic pain symptoms. The paper was published in a peer-reviewed journal and presented at a scientific meeting. Over the next decade, my clinic and I have continued to see positive results using this approach with ME/CFS patients. We are currently working on a larger study to determine the efficacy of a similar medication.
My Book on CFS
I also decided I needed to share what I have learned with others and so I researched and wrote: Understanding and Treating Chronic Fatigue: A Practical Guide for Patients, Families, and Practitioners (Praeger, 2020). The book explores the various theories attributed to ME/CFS and debunks some of the discredited ideas that are still in circulation. Pharmacologic and psychosocial treatments for people with CFS are summarized with a full chapter detailing my LDX study. Using the experience of my patients as guideposts the book discusses what is needed to manage the chronic fatigue, brain fog, chronic pain, and sleep problems associated with ME/CFS.
Mental Health Experts Need to Know CFS Is Real
Maybe you are among the doubters of CFS as a “real” medical problem. If so, I challenge you to read my book and discover if you feel the same way afterward. I suspect you may be persuaded and I also suspect that if you are you will be better positioned to advise patients who have suffered for years without acknowledgment and treatment of their debilitating symptoms. That is my fervent hope and major goal.