Health knowledge made personal
Join this community!
› Share page:
Go
Search posts:

A Battle for Legitimacy - Understanding Chronic Fatigue Syndrome/Myalgic Enephalomyelitis and Yoga’s Role in its Treatmen

Posted Jan 17 2011 1:31pm

The following paper was written by Lis Wagner as part of her teacher training program at Eight Limbs Yoga in Seattle, Washington. Lis' research included reading articles in my blog and interviewing me and other persons with CFS. 

 

Darden Burns led a healthy and active life into early adulthood. She got daily exercise and plenty of sleep, ate healthy foods, played music, had a moderate workload in school and a low-stress lifestyle, and did not suffer from depression. At age 19 her health changed overnight; the morning after having an alcoholic drink Darden woke up hung over with flu-like symptoms. Her symptoms lingered for months. Countless medical examinations and blood tests produced no answers, months turned into years, and Darden was forced to dramatically change her lifestyle to accommodate a mysterious, unnamed chronic illness. Later in life, she would come to label her illness chronic fatigue syndrome, or CFS. [1]

Unlike Darden, Quinn [2] began experiencing symptoms gradually after undergoing a hysterectomy in her mid 40s. She developed irritable bowel syndrome (IBS) and debilitating migraines. As years went by, her host of symptoms grew to include severe fatigue, heart palpitations, brain fog, vertigo, muscle ache, constant thirst, insomnia, hypersensitivity to food and drugs, and persistent nausea. Her symptoms left her increasingly unable to perform daily tasks or leave the house, let alone participate fully in her family’s lives. She visited one doctor after another, each one prescribing medications, diets, and therapies to address one aspect of her ill health rather than looking at her condition as a whole. The treatments sometimes worked for a time, but provided no complete answer. What was most baffling was the fact that Quinn appeared relatively healthy on paper; tests continually came back with “normal” blood levels and negative diagnoses for acute illnesses. Quinn was diagnosed with CFS after all other possible diagnoses were ruled out. Despite her years of physical suffering and the significant financial burden of her illness, the most painful aspect of Quinn’s experience has been the lack of understanding and support from family, friends, and medical professionals. Her condition has often been perceived as psychosomatic—a product of hypochondria, malingering or depression. Like many CFS sufferers, her illness is often considered to be “all in her head.”

CFS has only recently begun to gain credibility as a biologically-based medical condition. Research on the condition is in its infancy, and the majority the American general public has either never heard of CFS or knows it as “yuppie flu.” [3] The suffering of CFS patients is profoundly complex and misunderstood, yet it is real and can be treated. There is no known cure for CFS, and treatments for the illness are as varied as the diverse array of it sufferers. Yoga has stood out as an especially effective treatment for CFS because of its holistic approach to healing; unlike drugs, diets, physical therapy, or psychotherapy alone, yoga is a means to address physical, mental, and spiritual issues, all of which play roles in CFS.

 History of ME/CFS: a Disease in Search of a Name

The earliest record of an ME/CFS-like illness was reported in the 1860s and was deemed neurasthenia. In 1956, MD A Melvin Ramsay coined the term myalgic encephalomyelitis, or ME, in a Lancet article describing outbreaks in Europe of a disease marked by debilitating fatigue. Incidences of ME-like illnesses were not reported in the U.S. until 1984. Soon after, the National Institute of Allergy and Infections Diseases decided on the name chronic Epstein-Barr virus (CEBV). This name was only briefly used in medical journals; in 1988 the Centers for Disease Control and Prevention (CDC) published a case definition for the illness and labeled it chronic fatigue syndrome. This name has received quite a bit of resistance; according to CFS sufferer and ProHealth Inc. founder Rich Carson, the name “chronic fatigue syndrome' is universally perceived as trivializing, dismissive, and thoroughly inaccurate. [4] In contrast, myalgic encephalomyelitis, which refers to inflammation of the brain and spinal cord that often comes with the condition, prompts a more serious attitude. [5] In 2006 Carson launched the Fair Name Campaign with the goal of changing the condition’s name to further legitimize it as a serious medical condition. Though there is still no consensus on an official name for the disease, CFS and ME/CFS are currently the most commonly used titles. 

Symptoms and Diagnosis

Physicians will only diagnose ME/CFS after they have ruled out all possible acute conditions. In biomedical terms, ME/CFS is not technically a treatable illness; MDs will test for conditions such as sleep apnea, hypothyroidism, and depression before diagnosing ME/CFS. [6]    

The CDC has since revised its 1988 CFS case definition to allow for more effective research, evaluation, and classification of CFS sufferers. [7] According to the CDC, a patient diagnosed with CFS has been experiencing persistent and unexplained fatigue that is not due to ongoing exertion, is new (not lifelong), is not improved with bed rest, and significantly reduces previous levels of activity. But fatigue is not the whole picture; to be diagnosed with CFS, the patient must also be experiencing at least four other listed symptoms for at least six months. In reality, the list of symptoms that may accompany ME/CFS is long and varied, but in terms of what the Western biomedical community recognizes under CDC guidelines, the list includes impaired memory or concentration (brain fog), postexertional malaise, unrefreshing sleep, muscle pain, multijoint pain without swelling, headaches, sore throat, and tender lymph nodes. [8] A patient experiencing less than four of these symptoms is diagnosed with chronic fatigue, rather than CFS.  

 Causes

There is no single proven cause of ME/CFS. It is often initiated by a stressful event on the body, which may be a viral infection like mononucleosis, a hysterectomy causing hormone imbalance as in Quinn’s case, or something as simple as a drink of alcohol, as was the case with Darden. Such an event, in combination with preexisting physical, neurological, or genetic abnormalities, can cause ME/CFS. Darden, on her thoroughly researched blog about ME/CFS and fibromyalgia, uses Malcom Gladwell’s idea to illustrate the way a stressed body can reach “’The Tipping Point:’ the moment of critical mass, the threshold or boiling point when sudden change occurs. … The brain responds to crisis by downgrading functions to conserve energy, which can affect nearly every organ and system of the body and results in profound fatigue that is not relieved by rest.” [9]

Epstein-barr virus (EBV) or mononucleosis is the most common viral infection linked to ME/CFS because of their similar symptoms. Other viruses have shown to result in post-infective conditions that meet criteria for ME/CFS in some patients, but research has only discovered one virus that may have a specific link to ME/CFS: the human retrovirus xenotropic murine leukemia virus-related virus, or XMRV. [10]

Immune system abnormalities often contribute to ME/CFS. Again there is no constant trend: some patients appear to have an overactive immune response, while others have below average immune activity. Allergies appear to be common preexisting problems among ME/CFS patients. Autoimmune deficiencies also may play a role, yet studies are inconclusive.

Other significant pieces in the ME/CFS puzzle are nutritional deficiencies--many patients struggle with impaired absorption of nutrients and reduced ability to make efficient use of them; exposure to toxins; and electromagnetic field (EMF) pollution.

The most promising work done regarding ME/CFS points toward genetic variation in the hypothalamic-pituitary-adrenal axis ; the HPA axis is a major part of the neuroendocrine system that controls reactions to stress and regulates many body processes, including digestion, the immune system, mood and emotions, sleep patterns, and energy storage and expenditure. Studies have shown that women with ME/CFS exhibit lower cortisol levels in the morning—a time of high stress on the body—than healthy women and men. [11] This abnormality signifies adrenal fatigue, which is a condition often too mild to be recognized by blood tests and thus is only recognized by alternative medicine. Overall, investigation in this vein explores the most prevalent and central cause of ME/CFS: the body’s response to stress. This fits in with Darden’s definition of ME/CFS: that it is a specific response to overwhelming stress.

Airway obstruction causing inability to breathe optimally appears to play a significant hand in exacerbating this specific response to stress. Many ME/CFS sufferers are surviving on less air than healthy people, often due to an oversized tongue and/or jaw. But this does not show up in oxygen saturation tests because their bodies compensate with low blood pressure, often causing neurally mediated hypotension, colloquially termed the fainting reflex. Neither Darden nor Quinn realized that their airways were obstructed until exploring an alternative therapy called Oral Systemic Balance (see Treatments section below).

 Treatments

There are no simple treatments or prescription drugs developed for CFS. Treatment often includes multiple therapies, both “traditional” and “alternative,” and is aimed more toward coping with symptoms rather than eliminating them. Patients must tailor and periodically revise their treatments to accommodate complicated changing symptoms.

On the more mainstream side of the spectrum, treatments include antidepressants, counseling, cognitive-behavioral therapy, exercise therapy, pain medication, and sleep management techniques. In the realm of alternative medicine, treatments range from dietary modifications; detoxification; use of supplements; and hormone replacement; to Atlas Profilax, a physical procedure that adjusts the C1 vertebra; grounding, which reconnects the body with the earth’s energy flow of electrons; and Low Energy Neurofeedback System (LENS) for resetting brain wave patterns, to name a few. [12]

Oral Systemic Balance (OSB) is one alternative therapy that stands out from the rest due to its high rate of effectiveness. Developed by TMJ dentist Ferrand Robson, the treatment employs individualized oral appliances to open the airway and thereby improve breathing and restore balance to the nervous system. Thus, OSB is especially relevant in light of yoga’s role in treating ME/CFS; like pranayama, OSB works to achieve optimum oxygen intake by physically adjusting the body to respire in the most efficient and least taxing way possible.

Yoga as Treatment for ME/CFS

When Darden fell ill with ME/CFS she had to completely change her lifestyle. Though she had to give up many activities that she loved, she practiced yoga for 25 years until her health further declined and she was diagnosed with fibromyalgia—ME/CFS’s sister disease characterized by muscle tightening and pain--in her late 40s. Darden believes that her yoga practice played a pivotal role in keeping her symptoms at bay and staving off her decline into fibromyalgia as long as possible. Results of an Iowa College of Medicine study lend credence to Darden’s experience. The two-year study showed that ME/CFS patients who included yoga in their treatment felt better on a regular basis than those who used other treatment methods without yoga. [13]

An appropriate yoga practice for a person with ME/CFS is one that is carefully tailored to his or her specific symptoms, abilities, and limitations. If the patient is healthy and mobile enough to practice asana, it should be gentle and restorative. Yin, Kripalu, and Anasura styles are appropriate, rather than more vigorous or didactic styles like Ashtanga and Iyengar. Use of a chair, wall, and props is strongly recommended.

Pranayama can be incredibly powerful in regulating the nervous system and one’s response to stress. ME/CFS patients should begin a pranayama practice with simple one-to-one rounds of diaphragmatic breath. Once that is comfortably mastered, he/she can move to energizing techniques employing longer inhales and ujjayi breath in the morning, and calming breath with longer exhales before bedtime. Practicing at appropriate times of day is especially important for ME/CFS patients so that they can strive to maintain healthy circadian rhythms and sleep patterns. Meditation can be immensely effective for bringing much-needed relaxation, slowing heart rate, reducing anxiety and depression, and improving concentration.

Because ME/CFS is a complex, incurable illness that instills doubt, uncertainty, and guilt, its victims often develop fear of and detachment from their physical bodies. Bainbridge Island-based physical therapist and yoga teacher Suzanne Brassel emphasizes how yoga empowers people with ME/CFS to be present and mindful in their bodies. She encourages them to acknowledge their pain, rather than ignoring it or pretending it’s not there. Drawing from a background in Kripalu and Anasura yoga, Suzanne employs a forgiving, supportive, and individualized style of yoga for her ME/CFS patients. She endorses using pranayama for anyone practicing yoga, not just advanced students, and she breaks down asanas into small movements to bolster body awareness and mindfulness in her ME/CFS patients. Like Darden, Suzanne has great faith in yoga as a multidimensional treatment for ME/CFS that is unparalleled in its effectiveness.

 Conclusion

The most fundamental step in increasing legitimacy for this misunderstood illness is awareness. We practice yoga so that we can understand our bodies and souls and thus live more mindfully in the world. In the same spirit, we should inspire those around us to regard ME/CFS--or any misunderstood illness for that matter--with an open and curious mind, rather than dismissing it as malingering or a yuppie disease.

Burns, Darden. Chronic Fatigue & Fibromaylgia Syndromes - Strategies for Healing. Fibro Friends weblog. 26 June 2010. http://fibrofriends.typepad.com/fibro_friends/chronic-fatigue-syndrome/

Burns, Darden. What Causes Chronic Fatigue and Fibromyalgia Syndromes? Fibro Friends weblog. 9 Aug. 2010. http://fibrofriends.typepad.com/fibro_friends/chronic-fatigue-syndrome/

Carson, Rich. Founder’s Corner: Fair Name Campaign Update - Exciting New Direction. ProHealth.com. 19 May 2008. http://www.prohealth.com/library/showarticle.cfm?libid=13675 ;

CFS Case Definition; Diagnosis. CDC.gov. http://www.cdc.gov/cfs/general/case_definition/index.html ; http://www.cdc.gov/cfs/general/diagnosis/index.html 

Causes, Chronic Fatigue Syndrome. University of Maryland Medical Center.13 Jan. 2009. http://www.umm.edu/patiented/articles/what_causes_chronic_fatigue_syndrome_000007_3.htm

Grady, Denise. Virus Is Found in Many With Chronic Fatigue Syndrome. New York Times. 8 Oct. 2009. http://www.nytimes.com/2009/10/09/health/research/09virus.html

Kelly, Alice Lesch. Rest for the Weary. Yoga Journal. http://www.yogajournal.com/health/124

Nauert, Rick PhD. Stress Triggers Chronic Fatigue Syndrome. PsychCentral.com 18 Jan. 2008. http://psychcentral.com/news/2008/01/18/stress-triggers-chronic-fatigue-syndrome/1804.html

Richards, Karen Lee. A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name. http://www.healthcentral.com/chronic-pain/chronic-fatigue-151675-5.html

 



[1] Information taken from an interview with Burns on 10 Dec. 2010.

[2] Name changed for patient confidentiality.

[3] In November of 1990, Newsweek published a cover story on CFS, deeming it “yuppie flu” based on evidence that the condition largely affects upper middle class women. Richards, Karen Lee. A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name. HealthCentral.com.

[4] Carson, Rich. Founder’s Corner: Fair Name Campaign Update - Exciting New Direction. ProHealth.com. 19 May 2008.

[5] A 1999 Depaul University study showed that medical trainees were more likely to regard a patient’s illness as psychologically-driven when labeled as CFS versus ME. Richards, Karen Lee. A Disease in Search of A Name.

[6] Information gathered from a phone interview with Patrick N. Wagner, MD on 25 Dec. 2010.

[7] Though there has been considerable controversy and disagreement over the CDC’s work surrounding ME/CFS, I will use its guidelines in the interest of authority and simplicity. The CDC’s current guidelines demand patients be subgrouped based on the length and type of fatigue/symptom onset. CFS Case Definition; CFS. CDC.gov.

[8] Diagnosis; CFS. CDC.gov.

[9] Burns, Darden. What Causes Chronic Fatigue and Fibromyalgia Syndromes? Fibro Friends weblog. 9 Aug. 2010.

[10] Grady, Denise. Virus Is Found in Many With Chronic Fatigue Syndrome. New York Times. 8 Oct. 2009; Causes, Chronic Fatigue Syndrome. University of Maryland Medical Center. 13 Jan. 2009.

[11] Nauert, Rick PhD. Stress Triggers Chronic Fatigue Syndrome. PsychCentral.com 18 Jan. 2008.

[12] Burns, Darden. Chronic Fatigue & Fibromaylgia Syndromes - Strategies for Healing. Fibro Friends weblog. 26 June 2010.

[13] Kelly, Alice Lesch. Rest for the Weary. Yoga Journal. 

 

Post a comment
Write a comment:

Related Searches