CHAPTER 1

Key Issues You Need to Know about Chronic Fatigue Syndrome

It was only 1:00 p.m., but Diana was so exhausted that she knew she would have to leave work early—again. She had accomplished almost nothing all day, because she just couldn’t concentrate. And although she’d achieved very little, Diana felt overwhelmed with exhaustion. Even if she could take a nap here at her busy insurance office—which she could not—she knew that a nap really wouldn’t help. When she had tried naps at home on the weekend, she never felt any better when she woke up. Diana thought about having to pick up her children in after-school care and then driving them home and making them dinner—and these tasks felt about as daunting as climbing Mount Everest. What is wrong with me? She wondered. Was it mononucleosis or some sort of major vitamin deficiency? Maybe she needed a complete physical examination. She had to do something, because at this rate, she wouldn’t be able to keep her job. Diana didn’t know yet that she had chronic fatigue syndrome, a common disorder that she shared with at least 2.5 million Americans nationwide.

If you suffer from chronic fatigue—or CFS—then you are not alone. Millions of Americans stagger around daily like walking zombies from a horror movie because they suffer from chronic pain, difficulty sleeping at night, constant fatigue, and a kind of “brain fog” that feels like being half-alive. If it’s CFS, no one knows for sure what causes this medical problem, although I describe every relevant theory I could find in this book. Probably of most importance to my readers is that this book offers real, workable solutions to the problem of chronic fatigue, and I offer individual chapters on how to improve problems like chronic pain, chronic fatigue, brain fog, and sleep disorders. I can’t promise to completely alleviate all your chronic fatigue, but I think my solutions can provide real and significant relief.

Why It’s Important to Diagnose and Treat CFS

Whether people call it chronic fatigue disorder, myalgic encephalomyelitis/chronic fatigue disorder (ME/CFS), or its newest name (which is quite a mouthful), systemic exertion intolerance disease (SEID), the disorder causing these symptoms can bring strong people to their knees with its symptoms of extreme fatigue, sleep deprivation and unrefreshed sleep, chronic pain, and foggy thinking—none of which is conducive to leading a healthy, normal life. The Centers for Disease Control and Prevention (CDC) says that there are an estimated 2.5 million people in the United States with CFS, and this illness costs the United States up to $59 billion (not million, but billion!) per year in medical bills and lost incomes.1 That’s a staggering amount—and an unsustainable loss to many families.

The disease harms all aspects of a person’s life, severely impeding personal, work, and family relationships. But the situation isn’t hopeless: treatment can provide major relief to CFS sufferers. If you suffer from CFS, or you know and care about someone else who may have this disease, then the information provided in this book will be meaningful for you. Why? Because there are treatments and therapies that are proven to work, and which I hope will also help you. Let’s start by explaining what is known about CFS, in terms of the people most likely to develop the disorder.

Women, Men, and Chronic Fatigue Syndrome

Anyone can develop CFS, but some research indicates that females are about three times more likely to develop this disease than are males. In study after study, women have significantly more CFS diagnoses than men. Some research indicates that women with CFS were more likely to have had an early menopause, perhaps prompted by gynecologic surgeries, such as a hysterectomy. Researchers have also found that excessive menstrual bleeding, bleeding between periods, and the presence of endometriosis were also more prevalent in the CFS group compared to the non-CFS group.¹

However, newer research based on actual diagnostic codes in a large database has indicated that there are more men with CFS than most people realize. In this study, the researchers analyzed data on diagnostic codes based on a database of about 50 million claims for people of all ages over the period 2011–2016. Of all the coded diagnoses, 258,702 people had a diagnosis of either CFS or myalgic encephalomyelitis (both diagnoses are essentially considered the same disease now). The researchers found that up to 40 percent of patients treated for CFS were males.2

Why do so many studies indicate that women are the primary CFS sufferers? It’s possible that women appear more frequently in many studies of CFS because women may be more likely to volunteer for studies than men. In this diagnostic code study, however, the information was extracted from the computer database, and no human volunteers were needed.

Notes

1.Roumiana S. Boneva, Lin, Jin-Mann S., and Unger, Elizabeth R., “Early Menopause and Other Gynecologic Risk Indicators for Chronic Fatigue Disease in Women,” Menopause 22, n. 8 (August 2015): 826–834.

2.Ashley R. Valdez, et al., “Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning,” Frontiers in Pediatrics (January 2019), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331450/pdf/fped-06-00412.pdf (accessed July 26, 2019).

The Demographics of Chronic Fatigue Syndrome: People Who Are Most Likely to Get CFS

Women are more likely to be diagnosed with CFS than men, although men are also diagnosed with this illness. Other demographic risk factors discussed in this section are intriguing to understand, particularly the age risk, but also others.

Age and CFS

People of any age may develop CFS, but most studies have found individuals ages 30–50 years old are most likely to be diagnosed with CFS. Some studies say that the range is 30–40 years, and others say it’s 40–50 years. The Institute of Medicine reports that 33 years is the average age of the first appearance of CFS.² It is unknown why people in these age groupings seem to have the preponderance of CFS. It is clear, however, that CFS affects the individual in the heart of life, when their young family relies on them most intensely and when they are trying to move to higher levels in their professional life. Contrast the onset of CFS to that of Alzheimer’s disease or even coronary heart disease. These conditions usually present in the later decades of life, and although they cause incalculable suffering, they strike when the patients have already raised their families or completed their careers. Given this delicate time in their lives, individuals with CFS deserve the attention of the medical community.

It’s also important to note that some adults with CFS report having suffered from low energy for decades. In addition, keep in mind that children are not immune to CFS (although this book concentrates on adolescents and adults). Parents report that their children with CFS are sluggish and lack the energy that their friends or siblings exhibit. Adults frequently apply very uncomplimentary terms to describe these children. “I have always been told that I am ‘lazy and unmotivated,’” a young adult patient with CFS sadly told me. When the symptoms start so early, individuals with CFS can fall behind in their education, their intimate relationships, and their work trajectory. Watching friends and colleagues outpace them is upsetting, but much of the frustration comes from subtle slights. “It hurts to be told that it’s all your fault. But if it is your fault, then what do you do? How do you make it stop? How do you fix yourself?” The answer is, of course, that it is not your fault. This book proposes that CFS is a brain condition–not of your making, not of your choice. And there are actions, discussed throughout the next few chapters that you can undertake to feel better.

Other Demographic Factors

Some studies have found that affluent whites are more likely to develop CFS, while other studies have found the reverse: that low-income minority individuals are at the greatest risk. At this time, not enough is known about racial and socioeconomic factors to conclude which finding is correct. More demographic studies need to be performed to fully describe patients with CFS. From the vantage of my clinic, CFS and related conditions are “equal opportunity diseases” that crosscut many populations. My patients have European, African, and Asian backgrounds. CFS does not discriminate against blacks or whites or Native Americans. Of course, not all Americans have equal access to health care, and part of the motivation of writing this book is to help the CFS population advocate for their own needs in the health care system.

Gulf War Veterans: Chronic Fatigue Syndrome and Fibromyalgia

About 700,000 male and female military veterans served in the Gulf War (1990–1991), and some developed serious service-connected disabilities, including CFS, fibromyalgia, and other health problems. Researchers compared more than a thousand Gulf War veterans to their nondeployed peers, and the researchers found the deployed veterans had a small but higher rate of CFS and fibromyalgia than their peers. For example, 2 percent of the veterans had clinical symptoms of fibromyalgia syndrome compared to 1 percent of the nondeployed veterans. In addition, 1.6 percent of the deployed veterans had CFS compared to less than 1 percent of the nondeployed veterans.1 No one knows what caused a greater risk for CFS or fibromyalgia in the deployed veterans.

According to the Veterans Administration (VA), military veterans who served in the Gulf War do not have to prove a connection between their service and chronic fatigue syndrome or fibromyalgia, although they do need to receive a diagnosis of one or both diseases to qualify for VA benefits.^2,3 This means that if you have or may have CFS, then you should apply to the VA for assistance. You may wish to ask the American Legion or the Veterans of Foreign Wars (VFW) to help you apply, because the many government forms that are required can be tedious, and it’s too easy to make a mistake. In later chapters we will offer some ways to approach your VA doctor about promising treatment for CFS.

Notes

1.Seth A. Eisen, et al. “Gulf War Veterans’ Health: Medical Evaluation of a U.S. Cohort,” Annals of Internal Medicine 41 (2005): 881–890.

2.Veterans Administration, “Chronic Fatigue Syndrome in Gulf War Veterans,” December 27, 2017, https://www.publichealth.va.gov/exposures/gulfwar/chronic-fatigue-syndrome.asp (accessed February 13, 2018).

3.Veterans Administration, “Fibromyalgia in Gulf War Veterans,” December 27, 2017, https://www.publichealth.va.gov/exposures/gulfwar/fibromyalgia.asp (accessed February 13, 2018).

Chronic Fatigue Syndrome: It Comes with a Price Tag

The CDC estimates that CFS costs the United States up to $37 billion per year in terms of lost productivity. A portion of this sum comprises the direct medical costs of the illness—they may run as high as $14 billion per year.³ In fact, this could be a low estimate. Earlier in the first decade of the 21st century, researchers analyzed the cost of CFS in the state of Georgia (with a population of about 4 million people). They estimated that the yearly economic costs of CFS for people in this state in the first decade were $1.2 billion in lost productivity and an additional $452 million in health care expenses.4

The elegance of the Georgia study design demand that the findings receive a deeper dive into their data. The researchers categorized the 500 subjects into three groups. The first group included individuals who met full criteria for the CFS group. The second group comprised the insufficiently fatigued group (ISF); these were individuals who met at least one criterion for CFS but not all of them. The final group comprised the nonfatigued (NF) individuals. The NF group met none of the criteria and were the healthy control group subjects. This straightforward technique allowed the researchers to fully compare the groups.

The study was well-powered; there were 112 CFS subjects, 264 ISF subjects, and 124 NF subjects. Multiple differences emerged between these three groups. For example, the subjects with CFS earned only about $23,000 per year, and 71 percent of them had been employed in the past four weeks. In contrast, the subjects in the NF group earned nearly $34,000 per year, and 95 percent of them had been employed in the past four weeks. The subjects in the ISF group earned an annual $23,856—not much more than those in the CFS group.⁵

Not surprisingly, the researchers also found that the health care expenditures for the CFS group were significantly higher than for the other two groups; for example, the average health care expenditures for the subjects in the CFS group were $5,683 for the year compared to roughly $3,000 for the ISF group and $2,000 for the NF group. Subjects with CFS had about twice the health care costs of the other two groups.

The researchers concluded:

CFS attributes to significant economic costs in terms of lost earnings and productivity. Like many other chronic illnesses, productivity loss is even larger than the costs associated with treatment. Such findings suggest that employers are major stakeholders in the search for better diagnosis and appropriate treatment since lost wages are often accompanied by absenteeism costs and health insurance costs that are borne by employers.⁶

Other researchers have analyzed the economic impact of CFS in other areas of the country. A study of patients with CFS in Wichita, Kansas, found a 54 percent drop in terms of labor force productivity tied directly to CFS. The Wichita study estimated that CFS caused a loss of about $20,000 for each person with the condition. By generalizing this finding to the nation as a whole, the researchers arrived at a figure of a loss of $9 billion per year for all people in the United States with CFS.7

No matter who performs the analysis or when the studies are conducted, the costs of CFS to the economy are staggering. The noneconomic costs to the patient, her employer, and her family are even greater.

Coping with Unbelievers within and outside the Family

I think it’s important to state here that people with CFS often express dismay that others do not believe that they are truly sick. They don’t have a rash, a broken leg, or anything that can be pointed to as the cause of their illness, because CFS is invisible. Even worse, although the CDC, the Social Security Administration, and many other agencies recognize the validity of CFS, many doctors still are dubious that it’s a “real” illness, even today. At its worst, the symptoms of CFS affect every moment of every day. The burden is heavier when key members of your life, family, friends, and even your doctors doubt the underlying premise that CFS is a real condition. Too many patients do not receive the validation they deserve.

I believe that the failure to take the condition seriously has two key elements. First, doctors like objective biological signs and quantitative measurements. Medical professionals feel most comfortable when they can visualize a problem through a microscope, endoscope, or a computerized tomography (CT) scan. We know how to measure elevated cholesterol levels and inadequate kidney functioning. We can quickly identify low blood pressure, elevated hemoglobin A1C, and antibodies to the HIV virus. Broken bones appear on the radiologist’s screen; calcium deposits are accurately scored by cardiac examinations. Since the 1980s, technology has allowed the profession to quantify considerably more of the human condition than in past years. As with our cars, all this information reduces to flashy dashboards; and health care providers, like the rest of us, are attracted to the method of concentrating information. Quite simply, doctors see abnormal lab values and find reliable ways through medication or surgery to intervene. As there are no clear biological markers for diagnosing CFS, the condition does not fall into this tidy model.

Second, doctors value feeling effective. Addressing a raging infection offers tangible rewards, as does setting a bone, delivering a baby, or lowering someone’s ominously high blood pressure. It is far less rewarding to encounter a patient for whom you have little to offer, and it follows that doctors shy away from becoming involved in unwinnable situations. Healers generally do not want to be confronted with a sense of impotency. In many physician circles, treating CFS is seen as fighting the proverbial windmill, and there is often an unconscious (and sometimes deliberate) decision to avoid seeing CFS patients. Many major-referral medical centers in the country will not agree to see CFS patients. In this book we hope to reverse this trend by offering evidence that CFS can be succinctly diagnosed and quantified—and, most importantly, symptoms can respond to specific treatments.

Patients May Feel Like Fakers (And Others May Think They Are Malingerers, Too)

Sometimes, especially if the disease has not been diagnosed yet, people with CFS feel like maybe they really are being “lazy” or “crazy” and should just get off their butts and start living again. But when you’re in the throes of this illness, the fatigue feels like being submerged in a tar pit. You may have the will of a hero, but your body just will not cooperate.

After talking to hundreds of people with CFS, I developed Table 1.1, a chart of the annoying comments that people with CFS often encounter. I also detail the way many people with CFS respond to the affront. For example, many comments are unappreciated, such as when someone relates that their cousin’s wife had that problem and committed suicide. Even supportive comments can be misconstrued; it often seems that no one comes close to understanding your suffering. In the last column, I offer some ways to take the high road whenever possible. However, the barrage of unsolicited comments can be unrelenting—and it’s understandable if you slip up now and again.

Beyond the Economic Costs: Other Ways CFS Affects Lives

Some skeptics continue to believe that CFS is a contrived disease, one that was manufactured for lazy people and malingerers to justify their underperformance. Sadly, this stereotype still lingers in the medical community, and this widespread ambivalence creates obstacles to the diagnosis and treatment of this illness. For individuals who are ultimately diagnosed with CFS, it is frequently the case that CFS was not considered as an explanation for five to ten years after their initial complaints.

Even in the absence of good treatment, an accurate diagnosis allows patients to gain a vocabulary to describe their symptoms. For instance, postexertional malaise (PEM) denotes the severe exhaustion experienced after physical activity. Yet even this term is deceptive because many individuals with CFS experience fatigue all day long, even in the absence of any exertion. Nonetheless, PEM describes how difficult it is to achieve basic goals of daily life.

Table 1.1 Chart of Annoying Comments People Make to Individuals with CFS

Comments People May Make to the Person with CFS	What You May Feel Like Saying	What’s Better to Say
Are you sick again? When are you going to finally get better?	If I could recover this minute, I would!	Chronic fatigue syndrome is a relapsing disorder, but I’m working on it.
My cousin’s wife had that chronic fatigue thing. She killed herself.	So, you think I’m going to kill myself or maybe I should kill myself?	That is very sad, but there is new hope for people with chronic fatigue syndrome.
I wish that I could stay home and watch TV all day instead of having to work.	If I could give you this disease for a day, then maybe you would understand it’s no fun at all.	I would much rather work and have a normal life than be sick all the time.
I know someone who had that illness, and she began exercising and got all better. Why don’t you try working out at the gym?	I can barely get out of bed, and you want me to lift weights and run a treadmill? Are you crazy?	Some researchers have found that active exercise makes chronic fatigue syndrome worse, not better. In contrast, others feel better with physical exertion. It depends on the individual.

The consequences of this illness strongly influence family relationships, work relationships (if the person can continue to work, which often they cannot), and relationships with friends, who may offer various levels of understanding. In this section, I transcribe the words of people who were diagnosed with CFS to convey the effects their illness has had on these relationships, based on their responses to a questionnaire developed by my team and me. Some respondents were recruited on Facebook sites, and others were drawn from my own patient population. All respondents were promised (and given) anonymity.

How Patients Can Explain CFS to Family and Others

Many patients have difficulty explaining to others what CFS is and how it affects them. Keep in mind that dealing with others who question your symptoms often can be frustrating. Table 1.1 illustrates the comments other people may make to you and includes comments you may feel like making and comments we recommend making instead.

Although the listeners may acknowledge the patients are sick, they may believe the doctor should simply give them some medication or treatment that will cure them quickly. Still others will reel off a list of remedies that they think might work, ranging from prescribed drugs to supplements to just-invented devices or other so-called treatments. Here are some facts to help patients explain CFS to their family and others:

•It’s a chronic disease.

•You’re working on getting help for your symptoms. (Consider sharing those symptoms.)

•You don’t know how you got it (unless you think you do).

•It isn’t contagious.

Explanation: CFS Is a Chronic Disease

Many people have a simplistic view of diseases. They believe a disease is contracted, similar to strep throat or a urinary tract infection, and that proper treatment will lead to a full recovery. But many diseases are chronic illnesses with no known cure, such as osteoarthritis, heart disease, and high blood pressure (hypertension). There are good treatments for these diseases, and there are also steps that patients themselves can take to improve their condition, such as losing weight, improving their diets, and so forth. However, there is no known cure for many chronic diseases.

CFS is a chronic disease, often with ups and downs that occur for no apparent reason. It parallels allergies in that many patients have periods of intense symptoms and other times of relative calm. Similar to other chronic conditions, such as insulin-dependent diabetes (type 1 diabetes), CFS is not curable. The major thrust of this book, however, is that regardless of whether the FDA has approved a specific medication, effective disease-management options are available. Good treatment of CFS involves an accurate diagnosis, the use of medications, and lifestyle changes—all of which will be discussed in this book.

Explanation: The Patient Is Working on Addressing Their Symptoms

If you’re afflicted with CFS, it’s helpful for you to explain to friends, family members, and colleagues that you have sought help for your symptoms. People in your life may not relate to the burden of fatigue, but they can offer needed support. You may encounter some people who do not have the capacity to offer much empathy, and in such cases, sharing your struggle with them can be unproductive. If they are dismissive, then doing so may even be counterproductive.

Your support system will benefit from knowing that the tiredness CFS causes is different from how a person feels after staying up all night and then going to work the next day. Unfortunately, a good night’s sleep does not relieve CFS. In fact many people are surprised that daytime symptoms of CFS sometimes may have very little to do with the quality or quantity of nighttime sleep.

Explanation: Patients Don’t Know How They Got CFS

Most people have no idea how or why they became afflicted with CFS. Some people have noted that persistent fatigue occurred after a tick bite (Lyme disease) or a bout with mononucleosis or herpes zoster (shingles or chicken pox). Patients may explain that there are many potential causes of CFS, ranging from infectious diseases to injury from a car accident or childhood trauma. Confounding the issue further, not everyone exposed to the Lyme tick, mono, or chicken pox develops CFS. The majority of people with CFS cannot trace their symptoms back to one specific incident. Patients should feel free to divulge if they are unsure how or why they developed CFS.

Explanation: CFS Isn’t Contagious

Some things about this mysterious condition are clear. For example, there is no evidence that CFS spreads by air or touch from one human to another or that it is contagious by any other means attributable to being around you. Consequently, there is no reason for people to wear face masks or any other means of protection when they are with you. Even scientists who are convinced that CFS is caused by an infection (a belief not supported in this book) agree that any possible infection preceded the fatigue symptoms by months, maybe years, and that sufferers are not contagious. The bottom line is that humans don’t transmit CFS to each other. Many diseases are transmitted human-to-human, but CFS is not one of them.

Why I Wrote This Book

Readers may wonder why a psychiatrist is writing a book on CFS, so it’s worth retracing my steps. People suffering from chronic fatigue usually present to their primary care doctor. Sometimes anemia or low thyroid explains symptoms of fatigue, and offering the patient iron supplements or thyroid hormone replacements works well in such cases. However, more times than not, fatigue does not yield to obvious remedies, and after a while, primary care providers refer their CFS patients to various medical specialists in fields such as infectious disease, hematology, rheumatology, and endocrinology. If these long and laborious workups that various specialists may order are not fruitful, often psychiatry is called upon to counsel the patient regarding the frustration of living with a chronic condition. Anxiety and depression are certainly associated with chronic fatigue, but traditionally psychiatrists have been asked to treat these secondary symptoms that result from chronic fatigue rather than to treat the primary symptom of fatigue itself. Psychiatrists concern themselves with the Diagnostic and Statistical Manual (DSM), the professional encyclopedia of mental health disorders. CFS, not considered a mental health condition, is not included in the expansive DSM.

Because so many patients with fatigue symptoms have cycled through the existing system without deriving much benefit, and their doctors did not know what else to do, often these patients were sent to me. Early in my career, I would take CFS patients on, and like all the other specialists, I would earnestly try to help them. As I expressed an interest in seeing patients with this presumably untreatable condition, my fellow physicians would express surprise, a touch of sympathy, and a pinch of gratitude.

While the stream of referrals for CFS patients was growing, I was also developing an interest in the treatment of attention deficit hyperactivity disorder (ADHD). ADHD was largely regarded as the province of children, but by the ’70s and ’80s, psychiatry was starting to explore the natural history of ADHD, and I became intrigued with the question of what ADHD looks like beyond childhood. I became part of the early wave of clinicians willing to treat adolescents and adults with ADHD.

My early years in psychiatry coincided with a dynamic time in ADHD discovery. The most important finding came in a large national study designed to answer the contentious question of the best way to treat childhood ADHD. Some experts believed behavioral therapy was the best approach. Others felt existing medications were superior. The Multimodal Treatment of ADHD (MTA) study demonstrated unequivocally that Ritalin (methylphenidate) played a primary role in ADHD treatment.8 The MTA study was followed by a serious effort to develop more refined medication approaches, yielding many new ADHD medications beyond Ritalin over the next few years.

Many adults whom I diagnosed with ADHD had initially come to get help for anxiety and depression and had spent many years receiving antidepressant medications. Once they were accurately diagnosed, they benefited greatly from ADHD medications. As I was determined not to miss ADHD, I gave ADHD and other rating scales to all my patients. To my surprise, a few of my CFS patients also met the criteria for ADHD. I eagerly treated them with the appropriate ADHD medication.

I appreciated two meaningful outcomes. First, with treatment, many CFS patients noted improvement in their symptoms. They reported reductions in their inattention and distractibility and improvement in their focus and concentration.

The second finding was less expected. My patients with chronic fatigue began reporting experiencing improved energy. Some announced that they needed fewer naps during the day. They were getting out of bed more easily in the morning. They felt more motivated to get things done. They reported less muscle pain and less reliance on pain medications and physical therapy. Overall, they felt more productive and less overwhelmed.

Why might stimulants work for patients with CFS? Stimulants affect the chemical known as dopamine. Dopamine is present throughout the gut, heart, and brain. When stimulant medications increase dopamine in the prefrontal cortex, several properties emerge. Patients receiving these medications at the right dosage report greater alertness and wakefulness, feeling more activated but not high or altered. The potential utility of these medications in CFS is clear.

A less-understood fact is the property of this class of medications that allows individuals to focus on certain aspects in their environment and filter out other less relevant stimuli. The brain medicated with stimulants filters out the low-level physical symptoms of CFS, such as muscle pain, headache, and achiness. Absent these gnawing symptoms, the patient is better able to find a sense of well-being.

I concluded that long-acting stimulants could play a vital role in aiding the CFS patient.

Overview of Succeeding Chapters

The goal of this book is to develop a guide for the CFS patient and doctor. In the next chapter, I discuss how CFS profoundly affects patients’ lives and explore how physicians have regarded CFS over the years. A case study of CFS will illustrate the personal impact of this illness on both the individual and the family.

Chapter 2 provides information on the Institute of Medicine criteria for CFS and the proper approach to considering other explanations for chronic fatigue. The differential diagnosis for CFS is extensive and is essential for doctors to follow to ensure the best outcome for their patients.

In Chapter 3, I will summarize the various ideas proposed over the years to explain the causes of CFS—and there are quite a few theories! Some of these ideas retain strong proponents, some have lost steam over the years, and several have been thoroughly debunked. Nonetheless, readers may be curious to learn about competing explanations for this condition.

Chapter 4 is another important chapter because it covers other diagnoses that commonly appear along with CFS. Patients with CFS may or may not have these diagnoses, but many people do. It’s a good idea to treat all of the problems a person may have because even when the CFS symptoms are treated, other problems can impede the patient, including depression, anxiety, fibromyalgia, and other conditions.

I talk about my own research, the Rochester Center Study (RCS), in Chapter 5, and I discuss my success in treating patients with CFS with stimulants. In this chapter, I explain why I performed the RCS, what I found, and the implications of the project. Chapter 6 is a stand-alone chapter with information on long-acting stimulants and how they may play a role in improving CFS symptoms. I also cover the key arguments for and against the use of various stimulant and nonstimulant medications.

Chapters 7–10 are devoted to the core symptoms of CFS, and each chapter provides helpful advice on how to deal with these issues. For example, Chapter 7 covers coping with the severe fatigue that is so characteristic of CFS, including the role of hydrotherapy and other healing modalities. Many people with CFS suffer from chronic pain, and Chapter 8 is devoted to addressing this common problem, whether with nonopioid medications, yoga, or medical marijuana or CBD oil.

Chapter 9 covers what many people call “brain fog,” which is a major problem in which the person with CFS becomes aware that she is not thinking well nor is she concentrating effectively or she has become forgetful. No, she doesn’t have dementia, although she may fear that she has an early onset of Alzheimer’s disease. Useful remedies to combat brain fog are included in this chapter. Finally, Chapter 10 explores the all-important issue of sleep. Many people with CFS get too much sleep because they feel tired all the time, although some people find themselves in bed all day but not necessarily sleeping, and then they experience insomnia at night. This chapter offers practical suggestions to help with sleep problems.

Notes

1.Centers for Disease Control and Prevention, “ME/CFS: Making Strides to Enhance the Lives of Those Living with ME/CFS,” May 12, 2017, https://blogs.cdc.gov/publichealthmatters/2017/05/me-cfs/ (accessed February 4, 2018).

2.Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Institute of Medicine of the National Academies, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: National Academies Press, 2015.

3.Elizabeth R. Unger, et al., “CDC Grand Rounds: Chronic Fatigue Syndrome—Advancing Research and Clinical Education,” Morbidity and Mortality Weekly 65, n. 50–51 (December 2016): 1434–1438.

4.Jin-Mann S. Lin, et al., “The Economic Impact of Chronic Fatigue Syndrome in Georgia: Direct and Indirect Costs,” Cost Effectiveness and Resource Allocation 9, n. 1 (2011), https://link.springer.com/content/pdf/10.1186%2F1478-7547-9-1.pdf (accessed March 4, 2019).

5.Ibid.

6.Ibid.

7.Kenneth J. Reynolds, et al., “The Economic Impact of Chronic Fatigue Syndrome,” Cost Effectiveness and Resource Allocation (2004), https://resource-allocation.biomedcentral.com/track/pdf/10.1186/1478-7547-2-4 (accessed March 8, 2019).

8.The MTA Cooperative Group Multimodal Treatment of Children with ADHD, “A 14-Month Randomized Clinical Trial of Treatment Strategies for Attention Deficit/Hyperactivity Disorder,” Archives of General Psychiatry 56, n. 12 (December 1999): 1973–1086.