The History of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of people throughout the world[i]. This illness can include neurological, immunological, hormonal, gastrointestinal, and musculoskeletal problems.
Descriptions of symptoms resembling CFS have been written for centuries. It can happen among the general population and can also occur in epidemics. There have been more than 60 epidemics described over the years: in the Los Angeles County General Hospital in 1934, in Iceland about 1950, in England in 1955, in the United States in 1959, and other times.
Myalgic encephalomyelitis (ME) is another name for CFS. In 1955, A. Melvin Ramsay, M.D.[ii] studied an epidemic among the staff of the Royal Free Hospital in London. In 1956, Sir Donald Acheson wrote an article about Ramsay’s work, in which he called this disease benign myalgic encephalomyelitis.
“The term myalgic encephalomyelitis means muscle pain accompanied by inflammation of the brain and spinal cord[iii].” According to researcher Byron Hyde[iv], the onset of ME often follows an infectious illness. It can also occur at other times when the immune system is overwhelmed. ME involves changes in the central nervous system, autonomic function, cardiovascular system, endocrine and other systems. It can include below normal temperature, muscle fatigue, memory problems, sleep disorders and pain. ME can occasionally cause deaths involving central nervous system changes. Cardiac arrest and suicide are also possible causes of death.
Myalgic encephalomyelitis is another name for chronic fatigue syndrome.
In the mid 1980’s, Americans studied an outbreak of an illness in Nevada that they didn’t understand. Not knowing that this illness had been studied before, in 1988 the U.S. Centers for Disease Control and Prevention (CDC) decided to call it chronic fatigue syndrome.
Starting in 1994, the controversial Fukuda case definition[v] was used by many researchers and medical workers. This definition says that a person needs to have unexplained chronic fatigue that doesn’t sufficiently go away with rest. The symptoms must have lasted for at least six months. The patient should also have four or more of the following eight symptoms: poor short term memory or concentration, sore throat, tender lymph nodes of the neck or arm pit, muscle pain, pain in multiple joints, headaches, unrefreshing sleep, or postexertional malaise that lasts more than 24 hours.
This case definition was much too vague and led to more confusion. For example, postexertional malaise was only one possible symptom and not necessary for diagnosis. Yet this flare up of symptoms after exertion has proven to be one of the main indicators[vi] of this illness.
The name chronic fatigue syndrome is controversial. It has become popular in recent years to refer to the illness as ME/CFS to acknowledge the two most used names.
A 2003 study found that “chronic fatigue syndrome constitutes a major public health problem[vii].” In the United States, about 235 out of every 100,000 people have CFS. Fewer than 20% of those with CFS have been properly diagnosed and have received appropriate care[viii].
In other words, most who have CFS don’t know what illness they have and aren’t getting the care they need. Even the small percentage that have a proper diagnosis face ignorance and turmoil.
[i] Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams, and Susan Torres-Harding. “Causes of Death Among Patients With Chronic Fatigue Syndrome.” Health Care for Women International, 27:615–626, 2006.
[ii] “Ramsay’s Definition for M.E.” National Alliance for Myalgic Encephalomyelitis. http://www.name-us.org/DefintionsPages/DefRamsay.htm
[iii] Karen Lee Richards. “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name”. January 3, 2007. http://www.prohealth.com/library/showarticle.cfm?libid=12435.
[iv] Byron Hyde. “The Complexities of Diagnosis.” In Leonard A. Jason, Patricia A. Fennell, & Renee R. Taylor. Handbook of chronic fatigue syndrome. John Wiley & Sons, Inc. New Jersey. 2003. pp. 42–72.
[v] Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. “The chronic fatigue syndrome: A comprehensive approach to its definition and study.” Annals of Internal Medicine, Volume 121, Number 12. December 1994. Pages 953–959.
[vi] Leonard A. Jason and Renee Taylor. “Applying cluster analysis to define a typology of chronic fatigue syndrome in a medically-evaluated, random community sample.” Psychology and Health, Volume 17, Issue 3. 2002.
[vii] Michele Reyes, PhD, William C. Reeves, MD, et al. “Prevalence and Incidence of Chronic Fatigue Syndrome in Wichita, Kansas”. Arch Intern Med. 2003;163(13):1530-1536. http://archinte.jamanetwork.com/article.aspx?articleid=215827
[viii] William C. Reeves, et al. “New Study Finds High Prevalence of Chronic Fatigue Syndrome”. 03-10-2004. NCID Focus, Volume 13, Number 1. Winter 2004. http://www.prohealth.com/library/showArticle.cfm?libid=10322&site=articles
Dr. Teitelbaum’s Definition
In the 1990’s, I first learned about chronic fatigue syndrome from the book From Fatigued to Fantastic. Jacob Teitelbaum, M.D. explained that CFS has severe chronic fatigue with “a persistent and substantial reduction in their activity level.” It includes: “poor sleep, achiness, ‘brain fog’, increased thirst, bowel disorders, recurrent infections, and exhaustion after minimal exertion[i].” He discussed problems with the immune system, the neuroendocrine system, allergies, and nutrition.
In the 1990’s, Jacob Teitelbaum, M.D. wrote “From Fatigued to Fantastic” about chronic fatigue syndrome.
The adrenal and thyroid glands tend to be underactive. Blood tests can be in the low normal or just below the normal range. Many with CFS are told by their doctors that the tests are normal, when they actually have “subclinical hormone deficiencies[ii].” Problems can include low blood sugar, low estrogen in females, as well as low blood pressure and dizziness when standing[iii]. People with CFS can also have more urine output and therefore, increased thirst.
Allergies and sensitivities to foods and medications are common. People with CFS might only be able to take small doses of medications. CFS is associated with changes in the immune system. “People get repeated infections such as sinusitis and other respiratory infections, bladder infections, bowel infections, and yeast overgrowth[iv].”
Nutrition problems include deficiencies of B12 and other B-complex vitamins, magnesium and iron. “These may be aggravated by malabsorption and increased utilization[v].”
[i] Jacob Teitelbaum, M.D. From Fatigued to Fantastic. Deva Press. 1995. Page 13.
[ii] Ibid. Teitelbaum. Page 16.
[iii] Ibid. Teitelbaum. Pages 38, 111 (see Chapters 4-7).
[iv] Ibid. Teitelbaum. Page 58.
[v] Ibid. Teitelbaum. Page 93.
The Canadian Definition
In Canada in 2003, experts published a definition[i] for myalgic encephalomyelitis / chronic fatigue syndrome. I’ve put it in my own words in an attempt to explain the medical terms[ii].
Those with ME have fatigue that significantly limits the person’s activities.
They also have post-exertional malaise: meaning that after doing anything physical or mental, the person is worn out. Exertion also makes other symptoms worse, and it takes a long time to recover.
In Canada in 2003, experts published a definition for myalgic encephalomyelitis / chronic fatigue syndrome.
Sleep problems can take different forms. They might have troubles falling asleep or staying asleep. Some get nights and days mixed up, so they stay up late at night and sleep in during the day.
They often have pain all over in muscles and joints.
They have two or more neurological or cognitive problems. For example: troubles finding the right word, organizing thoughts, or concentrating. Difficulty remembering, or difficulty walking a straight line. They can get overloaded easily, such as with loud noises, bright lights, stressful situations, or when faced with too much input all at once.
Other problems can include:
Autonomic symptoms such as neurally mediated hypotension, postural orthostatic tachycardia syndrome, irritable bowel syndrome, or shortness of breath.
Neuroendocrine problems such as low body temperature, fever, cold hands and feet, or changes in weight.
Immune symptoms such as swollen lymph nodes, flu-like symptoms, feeling sick in general, low-lying infections, or sensitivities and allergies to food, medicine and chemicals.
The case definition also states that “ME/CFS is not synonymous with depression or other psychiatric illnesses. The belief by some that they are the same has caused much confusion in the past, and inappropriate treatment[iii].”
[i] 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. http://www.meresearch.org.uk/wp-content/uploads/2012/11/2003-Carruthers-Canadian-Definition-JCFS.pdf
[ii] Ibid., Carruthers. Pages 11 and 12.
[iii] Ibid., Carruthers. Page 27.
International Criteria for Myalgic Encephalomyelitis
In July 2011, Bruce M. Carruthers, MD and other leading experts agreed upon the new international criteria for myalgic encephalomyelitis[i]. I focused more on new research conclusions below, although this definition also describes many of the symptoms in other definitions. They rejected the term chronic fatigue syndrome, saying it showed a lack of knowledge about the disease. Research and experience pointed to inflammation and disease of the nervous system, so they felt that myalgic encephalomyelitis (ME) was a more appropriate name[ii].
ME is “a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities[iii].”
Fatigue in other conditions gets worse according to how much the person does, and the recovery occurs normally. On the other hand, fatigue in ME can occur with little physical or mental effort, and it can take a day or more to recover. Instead of the words “fatigue or malaise”, the term[iv] post-exertional neuroimmune exhaustion (PENE) is used. In addition to getting tired easily, the person also suffers a flare-up of other symptoms.
In 2011, Bruce M. Carruthers, MD and other leading experts agreed upon the new international criteria for myalgic encephalomyelitis.
Also, the patient can have more pain. There can be less oxygen and blood volume/flow to the brain. Oxygen doesn’t get to the muscles as it should. And the patient can have high levels of nitric oxide metabolites[v]. (Nitric oxide widens blood vessels, which lowers blood pressure.)
Specific problems have been studied in the brain and spinal cord. They know more about what causes the central nervous system[vi] not to function properly, and about what causes problems such as poor memory and troubles paying attention. Specific immune system problems have been found, and various infections have been investigated as having a possible role.
The mitochondria of the cells don’t produce energy as they should. A specific cycle called the NO/ONOO cycle has been identified that contributes to the lack of energy and other symptoms.
A problem with the left ventricle of the heart has been studied. And they’ve measured orthostatic intolerance problems. For example, “the brain is not receiving sufficient circulating blood volume in an upright position, which is intensified when standing in one place such as a grocery store check-out line[vii].”
They explain how to diagnose ME. Much of this is similar to the Canadian definition, except more is known about the process of the illness now. They describe symptoms such as PENE, poor cognitive function, pain, sleep problems, sensitivities to light and noise, muscle weakness, poor coordination, etc. They also describe immune impairments, gastrointestinal problems, and sensitivities to food, medications and chemicals. Other problems include labored breathing, low grade fever or low body temperature, and cardiovascular problems such as NMH and POTS.
[i] Bruce M. Carruthers, MD, et al. “Myalgic Encephalomyelitis: International Consensus Criteria”. Accepted date: 15 July 2011. https://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf
[ii] Ibid. Carruthers. Page 2.
[iii] Ibid. Carruthers. Page 3.
[iv] Ibid. Carruthers. Page 6.
[v] Ibid. Carruthers. Page 7.
[vi] Ibid. Carruthers. Page 8.
[vii] Ibid. Carruthers. Page 9.
Click below for links to more definitions of ME/CFS, resources, shopping and coping tips.
“Glendale High School students plant 500 trees in the Douglas Complex burn”. Oregon Department of Forestry. Attribution 2.0 Generic. https://www.flickr.com/photos/oregondepartmentofforestry/13891371192/