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Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome

Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome
Literature review current through: May 2024.
This topic last updated: Jul 08, 2022.

INTRODUCTION — This topic was written by an individual patient diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

(See "Clinical features and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome".)

(See "Treatment of myalgic encephalomyelitis/chronic fatigue syndrome".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:

(See "Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (The Basics)".)

(See "Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics)".)

BACKGROUND — I became ill with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in February 1983 at the age of 33. At that time, I lived in Washington, DC, and I was working to finish my PhD in physics at Howard University. I was a part of a wonderful research group at the National Bureau of Standards (now the National Institute of Standards and Technology), and I was teaching physics at Howard and at the University of the District of Columbia.

I was very busy, but I was having a wonderful time. Abruptly everything seemed to go wrong with my body, with no identifiable trigger, and my health has never returned. I have been ill with ME/CFS for almost 40 years.

MY INITIAL SYMPTOMS — At the age of 33, I developed the sudden onset of a wide variety of devastating symptoms. These included fatigue, muscle pain, poor exercise tolerance, neurologic symptoms such as headaches, and problems with my memory.

Fatigue — I was exhausted in a way that I had never experienced before, even during all-night study sessions in graduate school. Despite my exhaustion, however, I could not sleep at night.

Muscle pain — All of my muscles were in agonizing pain even when I tried to rest. The pain in my legs was the worst, severe enough to wake me up when I was asleep.

Poor exercise tolerance — I tried to attend my regular exercise class but ended up slumped against a wall, gasping for breath. I also began to gain weight at an unprecedented rate – initially a pound a week – without changing my diet at all. Within a few years, my weight had doubled, and although it stabilized, no diet plan, even those recommended by physicians, was able to reduce my weight.

Headaches and cognitive difficulties — The frequency and severity of my headaches increased. Worst of all, my brain no longer functioned in any way that I could recognize. I became lost driving to very familiar locations, including my workplace, the National Bureau of Standards, and would end up sitting in my car with no idea where I was, weeping. My memory was completely unreliable. A lifelong reader, I was unable to read the books that I loved.

Most painfully, I could not understand physics and math – subjects that I had loved throughout my life. My own calculations, which I had worked on just a few weeks earlier, made absolutely no sense at all to me. What happens to the cognitive abilities of people with ME/CFS is often called "brain fog," but for me, the term "cognitive disruption" is more accurate. I had never heard of something like this happening to anyone my age before, and I was terrified.

SEARCHING FOR A DIAGNOSIS

My journey — I thought that my symptoms would eventually resolve, but as the months went by, I only became more ill. I went to my regular general practitioner who was as baffled as I was. She ordered extensive blood tests for me and even ordered a computed tomography (CT) scan because she feared that I had adrenal cancer, but none of the tests were revealing. I even had several visits with the on-site psychologist at the National Bureau of Standards who agreed with my physician that I had a physical illness, but he could not give it a name.

Because no one could identify a cause for my physical collapse, I tried to continue working, but with no success. In desperation, I tried changing my activities in hopes of improving. I moved to Pennsylvania to teach at Lincoln University, hoping that the rural environment would allow me to teach and finish my PhD in a less stressful environment. I continued to decline. Finally, I stopped teaching and received a Ford Foundation grant to enable me to concentrate solely on finishing my doctoral work. I tried desperately to force my brain to work to no avail. By 1987, I had pushed my body and my brain so hard that they gave out completely. After a grueling move to Atlanta, Georgia, where my husband had been granted a faculty position, I became bedbound.

By 1988, all of my losses had left me struggling with depression. For me, this was not bad news. After five years of an illness for which there was no treatment or even a name, I was eager to find a psychiatrist who could treat my depression. The psychiatrist I chose listened to me and prescribed an antidepressant that was very effective in lifting my depression but left me with all of the physical symptoms that had crushed me since 1983. The psychiatrist then asked me whether I had ever heard of chronic fatigue syndrome (CFS). I had not, and the name sounded trivial for the illness that had so thoroughly crushed my life, but as soon as I left his office, I looked it up and found that there was an entire community of people who were struggling with the same disease that I had. Today it's called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

My psychiatrist referred me to an infectious disease doctor who had worked with the Centers for Disease Control in creating the case definition for CFS a few months earlier. He did extensive blood work, primarily to rule out other diagnoses, and confirmed my diagnosis. He told me that all he could offer was symptomatic treatment, but he connected me with the Atlanta support group for CFS. Attending the support group was a revelation. I met people whose stories were very much like my own. In addition to hearing others describe their cognitive disruption, I heard for the first time others describing the delayed, disproportionate crash that comes after overexertion that is now known as post-exertional malaise (PEM).

Communicating with health professionals — With a poorly understood, multisystemic illness like ME/CFS, finding a knowledgeable health professional can be challenging. In 1991, my insurance company referred me to a new infectious disease doctor who has continued to be my ME/CFS specialist for the past 30 years. I feel very fortunate to have found such a dedicated and knowledgeable practitioner who has served the Atlanta ME/CFS community for decades. He treats me as a partner in my medical care. We discuss current research and treatment developments together. We have a very similar, somewhat cautious, viewpoint about the balance between risk and the possibility of benefits when trying new medications. Although most medications that I have tried over the years have not benefited me at all, medications for pain and sleeplessness have been helpful, and one medication that we hoped might increase my energy level instead had a surprising result – I was able to read again. I am confident that, whenever promising treatments for ME/CFS emerge, my doctor and I will make the decision together about whether they will be appropriate for me.

Many patients have difficulty in locating a practitioner who is knowledgeable about ME/CFS. As a multisystemic disease, ME/CFS does not fit completely within any particular specialty. Doctors from a number of specialties can be good providers for people living with ME/CFS, but the first requirement is a willingness to listen carefully to the patient. ME/CFS causes a wide variety of symptoms, many of which may seem contradictory (eg, exhaustion but difficulty with sleeping; exacerbation of symptoms with exercise). Each patient brings with them a world of lived experience, and to be effective, a practitioner must be willing to respect that experience and utilize it in creating a treatment plan.

A good practitioner must also be open minded and willing to investigate new information that is currently being developed about ME/CFS. In order to follow the physicians' precept to "do no harm," the practitioner must not utilize disproven practices like cognitive behavioral therapy (CBT) and graded exercise therapy (GET) [1]. Fortunately, a group of experienced practitioners, the US ME/CFS Clinician Coalition [2], has published a website to assist practitioners in treating patients with ME/CFS.

In addition, it is important that practitioners recognize that ME/CFS can devastate the lives of people of every gender, age, and ethnicity. As an African American, I have spoken with many other African Americans who have encountered great difficulty in finding a practitioner who does not make false assumptions about African American patients, assuming that they are drug seeking or attempting to avoid work. Every practitioner should take particular care to avoid stereotypical assumptions about their ME/CFS patients.

People living with ME/CFS who are seeking a health care practitioner should try to find a clinician who both exemplifies the characteristics above and has a similar approach to treatment as that of the patient. Because there are no US Food and Drug Administration (FDA)-approved treatments for ME/CFS, knowledgeable clinicians may be more or less willing to try a variety of potentially helpful medications. A good partnership is essential. In addition, because cognitive disruption frequently means that medical instructions can be misunderstood or forgotten quickly, a good clinician should allow patients to record any information conveyed during an appointment.

LIVING WITH MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME — I continued to deteriorate badly for a few years after my initial diagnosis. I was mostly bedbound, unable to read. I would often not recognize my surroundings, and on one very disturbing occasion, I did not recognize my own daughter. I developed vitiligo, which my dermatologist assured me was a result of immune system disruption caused by ME/CFS. Vitiligo has stripped the melanin from large portions of my brown skin. By 1990, I had reached my lowest point. I spent most of the year struggling with diarrhea and vomiting. The vomiting was so severe that I even lost a front tooth. I menstruated almost constantly.

For reasons that I cannot explain, my most severe symptoms resolved at the end of 1990. This was not a result of any particular treatment; there was not then, nor is there now, a US Food and Drug Administration (FDA)-approved treatment for ME/CFS. ME/CFS symptoms can wax and wane, and I am grateful to have never had another year as severe as 1990.

After 1990, with my most dramatic symptoms behind me, I felt less ill, but my functionality improved only slightly. I retained all of the symptoms that had disabled me when I first became ill, and new symptoms would pop up from time to time.

From my support group, I had learned the importance of avoiding crashes; I was largely able to keep within what is called an "energy envelope," in which each patient evaluates the boundaries of their own daily energy limits and tries to stay within those boundaries. I learned about the "energy envelope" from the patient community and others who have discussed it in the literature [3]. As a management technique, the energy envelope concept is useful, but it has limitations. Life brings unexpected events, in my case, family members' illnesses, trees crushing our home in storms, and many others. These stressful events were each followed by large crashes and a loss of functionality that I could not regain.

I can no longer cook, clean house, or easily shop for groceries. Daily care activities like showering have become very difficult. Walking, even within my small house, is very difficult for me, and trying to stand up after sitting in a chair without arms is almost impossible. I use a variety of assistive devices: a rollator with a seat, a shower chair with arms, safety rails for the toilet, and a collection of canes from which I choose depending on the circumstances.

I am now 72 years old, and the dysfunction caused by ME/CFS has been compounded by age. Often it is difficult to differentiate between the two. The pain and dysfunction that I have experienced for almost 40 years has been exacerbated by severe arthritis in my knees. My mobility decreases year by year. Although I have never regained my health or even experienced the remissions that others living with ME/CFS have experienced, I am grateful that my illness does not appear to have shortened my life.

Information about ME/CFS is far more available now, but each person with ME/CFS must be discerning about extracting reliable information from the unfounded. I constantly wonder whether I could have avoided disability if I had known to stop and rest when I first became ill. I hope that every new ME/CFS patient will avoid pushing through, as I tried to do, and instead will rest, discern their energy envelope as well as they can while living with a constantly changing illness, and avoid physical, emotional, and mental stressors as much as possible.

My life could not be further away from the life that I expected; I had thought that I would teach and do research with my physics students for as long as I lived. Instead, I am mostly housebound and I require a great deal of help from my family to do almost everything. However, while I still mourn all of my losses, and my life is very small and challenging now, I am still here!

MESSAGE FOR OTHERS — If I could speak to every newly diagnosed person, the first thing that I would say to them is that this is not your fault. This is a life-crushing disease, but you did not cause it. There are good researchers working hard to understand this poorly understood disease, and as long as they are doing the work, there is hope.

Be very gentle with yourself. Be as kind to yourself as you would be to your closest friends if something this devastating happened to them. And remember that your life has value, no matter how constrained it may be. Try your absolute best to hold on.

RESOURCES — I would recommend that anyone living with ME/CFS find as many resources as needed to figure out how to best live your new life. Fortunately there are patient organizations like #MEAction [4] and the Solve ME/CFS Initiative [5] devoted to providing accurate information. There are helpful books; my favorite is How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. And there are support groups, online and occasionally in person, filled with people who have lived your story and who will welcome you with open arms. No one should struggle with this disease alone.

  1. For People with Chronic Fatigue Syndrome, More Exercise Isn't Better. NPR. Available at: https://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better.
  2. US ME/CFS Clinician Coalition. Available at: https://mecfscliniciancoalition.org/ (Accessed on June 25, 2021).
  3. Jason L, Muldowney K, Torres-Harding S. The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome. AAOHN J 2008; 56:189.
  4. #MEAction https://www.meaction.net/ (Accessed on July 02, 2022).
  5. Solve ME. Available at: https://solvecfs.org/ (Accessed on June 25, 2021).
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