One June night, I started shaking so badly that my teeth chattered. I could barely walk, and my heart raced. At the emergency room, they ran some general tests, but then the doctor guessed that it was anxiety.
That summer, my energy and health declined gradually. One July night, I woke up with my heart pounding, my chest tight, and difficulty getting in a full breath. The next month, I had trouble sleeping and would get headaches, dizziness, nausea, shakiness, and chest pain. My cheeks became swollen, and they got a rash.
By late September, my heart went about 150 beats per minute whenever I stood. At the emergency room, they didn’t seem to believe how severe my symptoms were.
By early October, I would feel faint, and my heartbeat was irregular. I would wake up nauseated and quite thirsty. One night, I woke up four times shaking so badly that my arms and legs bounced on the bed.
On October 10, I wrote in my journal: “I’m afraid of not being able to find the help that I so desperately need. I had to have the paramedics come for the first three times in my life. I wish I had a doctor that would listen to me enough to check into my concerns. My current doctor was so angry, but I thought that my problem was probably a physical one. I didn’t think that I had any more anxiety than someone else would have if their body were going crazy on them. When I went to the hospital last week, my husband had to carry me. It was the worst attack ever. And they sent me home before I was even able to walk.”
At one ER visit, I was lying there shaking, my teeth chattering, and my heart arrhythmic, while the doctor interrogated me. I looked at my husband once for help. The doctor wrote down the fact that I looked young for my age, and that I looked away from him, as “proof” that I was lying.
Over time, my tongue got a white coating on it, and I would get either a dull ache or a sharp pain in my chest. My blood pressure would be so low that I couldn’t walk from the bedroom to the kitchen without sinking to the floor. One day, while taking a shower, my heart raced. My energy dropped so low that I could barely move or speak, and I lay helplessly on the floor.
Later that night, I reluctantly went to the ER. They stood me up to see if it would set off my symptoms. My heart went crazy, going from 50 beats per minute up to 170 bpm, up and down. The heart monitor showed dips, double-beats, rectangles. Later, the doctor said that nothing showed on the tests and that it must be anxiety. I raised my eyebrows in surprise, “But I collapsed and couldn’t get up.” “Should I carry her to the car?” my husband moaned. When I couldn’t get up and leave, they gave me 2 liters of IV fluid and knocked me out with a tranquilizer. Again, they trivialized my symptoms.
Over the next few months, I saw a cardiologist, an internist, a gastroenterologist, and various other specialists. Some ran tests, some didn’t want anything to do with me. In March I wrote, “I have a sore throat. Last night my back hurt a lot. I don’t wish to have another doctor angry with me. I’ve been chewed out or told to go see someone else too many times. I was awake the whole night after my argument with one doctor.”
Finally, that next summer, a rheumatologist diagnosed me with chronic fatigue syndrome (CFS).
Science or Tradition
In 1955, myalgic encephalomyelitis[1] (ME) was the medical name given to an outbreak at the Royal Free Hospital in London. During the 1980s in the United States, this illness was named chronic fatigue syndrome[2] (CFS). Many people feel that the name chronic fatigue syndrome trivializes the suffering. It has become popular in recent years to call it ME/CFS.
Those with ME/CFS[3] have post-exertional malaise: meaning that physical and mental work worsens the symptoms and recovery is slow. Symptoms include “poor sleep, achiness, ‘brain fog’, increased thirst, bowel disorders, recurrent infections, and exhaustion after minimal exertion[4].” This illness[5] can also include problems with the digestive system, nutrition, allergies and sensitivities, balance, temperature control, sensitivity to light and sound, as well as flu-like symptoms[6].
Much has been discovered about the process[7] of ME/CFS, such as: the mitochondria of the cells not producing enough energy, less blood volume and flow to the brain, and oxygen not getting to the muscles and brain as it should. They know more about what causes the endocrine system and central nervous system[8] to malfunction. Specific immune system abnormalities have also been found.
By the next year, I had lost weight until my clothes were baggy. We treated different infections and struggled to find medicines that my body could tolerate.
Once I discovered that ME/CFS could include heart problems like mine, I returned to my cardiologist. After some testing, they didn’t think I met the full criteria for neurally mediated hypotension (NMH), but it was similar enough to recommend I take the medicine for it.
In NMH, the blood pressure falls too low while standing, and blood pools[9] in the arms and legs. Symptoms[10] can include lightheadedness, difficulty answering questions, nausea, muscle aches, confusion, and fatigue. These can also occur after exposure to a warm environment (such as a hot shower).
A few years later, after my health had gotten worse again, a new cardiologist looked at my latest heart readings and said that I have postural orthostatic tachycardia syndrome (POTS). These were the same heart recordings that another doctor scoffed at and refused to believe.
In POTS[11] the heart rate increases by at least 30 beats per minute while standing. The symptoms can include lightheadedness, palpitations, nausea, trembling, shortness of breath, poor concentration, and tiredness. A study at the Mayo Clinic[12] showed that POTS can be as disabling as chronic heart failure.
Many, but not all, who have ME/CFS[13] also have NMH or POTS.
An estimated 84-91% of ME/CFS sufferers haven’t been properly diagnosed.
A.R. Valdez, E.E. Hancock, et al.
In the United States, around 2.5 million[14] have ME/CFS, with around 250,000 in the UK. Approximately 25% of patients are homebound[15] with severe symptoms at some point. An estimated 84–91% of ME/CFS sufferers[16] haven’t been properly diagnosed. A survey in Belgium[17] showed that patients weren’t diagnosed for “an average of 5 years.”
The tradition is to see ME/CFS as psychological. In the past, doctors assumed that since no underlying disease had been identified, then it was irrational to believe that the illness was real. Symptoms[18] were claimed “to be maintained by dysfunctional illness beliefs” and “avoidance behaviors.” The tradition is still the prevailing view.
In one survey of physicians[19] in the UK, only half believed that ME/CFS was a real illness, and the half who did see it as real weren’t confident about diagnosing patients. In various surveys, some physicians[20] thought that patients exaggerated symptoms. When lab tests were inconclusive, healthcare workers[21] often gave vague statements such as, “it’s all in your head,” or would prescribe antidepressants. The treatment often aimed to change the patients’ belief that their illness was biological to “you do not have an organic disease[22], resting is harmful, you can do activities.”
Patients reported that sessions with health care professionals[23] were “very patronizing,” with the sense that they were being blamed for being ill. Others[24] have been accused of lying or faking.
Studies have shown that patients don’t have the personality or behavior problems that health professionals claim they have, and that they don’t show any more avoidant behavior[25] than healthy controls.
The debate continues whether ME/CFS is a physical illness, or whether it should be treated as a psychiatric condition.
Which One?
Lying in a hospital bed is a vulnerable place. When what I was told didn’t match the reality, my mind was left in turmoil. Should I believe what they were telling me? As I studied about ME/CFS, I began to realize that I could test the varying views against what I had learned in church. Matthew 7:20 says, “by their fruits ye shall know them.”
Galatians 5:22, 23 says that “the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith, meekness, temperance.” Does it lead to hope and healing? Does it fill hearts with joy and a desire to share? Are they easy to be entreated and full of patience? Are they open to truth and learning?
On the other hand, the scriptures list many examples of bad fruit, including pride, contention, and focusing on others’ faults. Matthew 7: 5 shows that we can see more clearly after working on our own misperceptions first. “First cast out the beam out of thine own eye; and then shalt thou see clearly to cast out the mote out of thy brother’s eye.”
Does it harm? Does it twist what is seen and heard to fit preferred traditions? Does it teach anger and hurtful shame? Does it lead to more misery or open new possibilities? Does it support, looking for good? Does it allow understanding and trust to enter in?
Below are some of the behaviors, words, and phrases I’ve observed over the years.
Fruits of learning about ME/CFS
Encourages sharing. Leads to help and healing. Works toward solutions. Acknowledges symptoms. Sees things as they are. Focuses on learning. Opens new possibilities and hope. Loving, kind and trustworthy. Explores options. Refers me to another doctor. Frustrated but keeps trying. Diagnosis fits the symptoms. Scientific studies support it with an increasing amount of evidence. Believes test results. Explains the abnormalities.
Fruits of the traditional way of seeing ME/CFS
The patient becomes afraid to share, confused, or despairing. Becomes traumatized or angry. Dangerous doctor situations. Falsely accuses. Misdiagnoses. Refuses to see or hear. Forces opinions on others. Blames. Trivializes, or changes symptoms. Tries to “prove” that I’m lying. Aggressively questions. Sends me home before I can even walk. Denies test results. Won’t follow through.
It’s hard not to internalize so many negative messages. When I am extremely ill, it’s hard to keep believing in myself.
I improve most when I learn about my illness and limitations as they are. When I learn solutions that others, who see it as it is, have found.
In my journal, I wrote: “When you refused to listen, I felt like you didn’t value what I needed to say. When you told me that there was nothing wrong with me and to ‘just get up and get on with your life’, I learned to feel guilty for my pain. When you told me I was causing this somehow and that it was my fault, I learned despair. When you tried to force me to believe that it was anxiety or psychosomatic, I knew that you would not help me or believe me. Please, work with me, listen to me, hear my cries. If we work together, instead of fighting, perhaps we can find the answers.”
[1] The ME Association. “ME Factsheet”. June 2019. p. 2. meassociation.org.uk
[2] Ibid. The ME Association. 2019. p. 2.
[3] Bruce M. Carruthers, MD, Anil Kumar Jain, MD, et al. “Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols.” Journal of Chronic Fatigue Syndrome, Volume 11, Number 1. The Haworth Press, Inc. 2003. pp. 11, 12.
[4] Jacob Teitelbaum, MD. From Fatigued to Fantastic. Deva Press. 1995. p. 13.
[5] Ibid. Teitelbaum. 1995. pp. 38, 111 (see Chapters 4-7).
[6] The ME Association. 2019. p. 2.
[7] Bruce M. Carruthers, MD, Marjorie I. Van de Sande, et al. “Myalgic Encephalomyelitis: International Consensus Criteria”. 15 July 2011. https://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf
[8] Ibid. Carruthers, et al. 2011. p. 8.
[9] Peter C. Rowe, MD. “General Information Brochure on Orthostatic Intolerance and its Treatment.” Chronic Fatigue Clinic, Johns Hopkins Children’s Center. March 2014. p. 2.
[10] Carruthers, et al. 2003. p. 18.
[11] Rowe. 2014.
[12] L.M. Benrud-Larson, M.S. Dewar, et al. “Quality of life in patients with postural tachycardia syndrome.” Mayo Clinic Proceedings. 77. June 2002. pp. 531-537.
[13] Rowe. 2014. p. 3.
[14] C. Blease, H. Carel, K. Geraghty. “Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome.” Journal of Medical Ethics. 43:549–557. 2017. p. 1.
[15] Stephanie McManimen, Damani McClellan, et al. “Dismissing chronic illness: A qualitative analysis of negative health care experiences”. Center for Community Research, DePaul University. Health Care for Women International. 2019. p. 1.
[16] A.R. Valdez, E.E. Hancock, et al. “Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning”. Frontiers in Pediatrics. Volume 6, Article 412. January 2019. p. 2.
[17] Blease. 2017. p. 5.
[18] Keith Geraghty, Leonard Jason, et al. “The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model.” Health Psychology Open. 2019.
[19] Blease. 2017. p. 5.
[20] McManimen. 2019. p. 2.
[21] McManimen. 2019. pp. 5, 6.
[22] Geraghty. 2019.
[23] Blease. 2017. p. 8.
[24] McManimen. 2019. p. 5.
[25] Geraghty. 2019. p. 8.
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