What is ME/CFS?
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a highly misunderstood condition that is characterized by a range of neurological, endocrine, immune and cognitive disturbances, accompanied by profound fatigue and exhaustion that is not improved with bed rest. Loss of muscle power, pain, tenderness and cognitive dysfunction following normal physical or mental activity are common. The symptoms of ME/CFS are highly variable and fluctuate in severity, complicating treatment and the ill person's ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.
Who gets ME/CFS?
ME/CFS afflicts an estimated 1 million americans and 17 million people worldwide. It occurs three times more frequently in women than in men, although people of either gender can develop the disease. The illness occurs in people of all ages but is less common in children than in adults. It occurs in all ethnic and racial groups, and in countries around the world. Research indicates that ME/CFS is at least as common among African Americans and Hispanics as it is among Caucasians and can affect people of all income levels. genetic links are suspected but more research needs to be done.
The current use of multiple definitions (Canadian definition, International consensus criteria and the 1994 case definition) makes diagnoses and research more complicated. People with ME/CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. ME/CFS patients are often severely disabled and bedridden. The cause or causes of ME/CFS have not been identified and no specific diagnostic tests are available. ME/CFS definition should include but not limited to :
2. Post Exertional Malaise
3. Sleep Dysfunction/unrefreshing sleep
4. Pain - muscle, joint and nerve
5. Autonomic issues such as orthostatic intolerance, POTS and up-regulated sympathetic nervous system
6. Neurological/Cognitive Manifestations such as short term memory issues and brain fog
7. Neuroendocrine dysfunctions such as intolerance to stress. temperature changes, enviromental challanges
8. Immune dysfunction such as tender lymph nodes, sore throat, headache and flu-like symptoms
The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue. CFS/ME affects most systems of the body including the Immune system, Autonomic nervous system, Digestive system, and Endocrine system.
ME/CFS is characterized by incapacitating fatigue with flu-like symptoms, muscle and joint pain, cognitive disorders, sleep disorders and depression, Physical and/or mental exertion creates post-exertional malaise, a condition worsening symptoms occurring within 12-48 hours of the exertion and requiring an extended recovery period.
Patients experience fatigue as intense exhaustion and extremely poor stamina. Flu-like symptoms occur with joint and muscle pain, tender lymph nodes, sore throat, and headaches/low grade fever. Cognitive disorders include difficulties with concentration, (brain fog) poor short term memory, word-finding difficulties, poor reading retention, impairment with speech, impaired reasoning and visual disturbances. Unrefreshing sleep and poor sleep maintenance including chills and night sweats contributes to fatigue symptoms and dysfunction.
Possible secondary issues in some patients include depression, irritability, anxiety, panic attacks, personality changes, mood swings, shortness of breath, dizziness and balance problems. Many sensitivities develop to environmental conditions such as heat/cold, food/alcohol intolerance, medications, chemical and light sensitivities, and noise/sound. ME/CFS patients are more likely to have other medical issues such as irregular heartbeat/blood pressure changes; Fibromyalgia; Irritable bowel Syndrome (abdominal pain, diarrhea, constipation, intestinal gas); numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies; light-headedness; fainting; muscle twitching; and seizures.
ME/CFS diagnosis can be a lengthy and frustrating process for patients. There is not currently a universal diagnostic test that clearly identifies ME/CFS so diagnosis becomes a process of elimination that can take more than a year. After eliminating other possible conditions, physicians are forced to compare a patients symptoms and case history to the international definition and predicted ME/CFS symptoms. There can also be a difficulty with over lapping symptoms with other conditions as ME/CFS patients are more likely to have other conditions simultaneously. Patient diagnosis is also inhibited by a lack of education in the medical community. Just recently has ME/CFS been recognized by the CDC as a disease and education and recognition about the disease has been slow. Patients may find it difficult to find a medical professional in their area that has experience and knowledge about ME/CFS. Education groups such as RMCFA can help cut down the frustration by identifying medical professional in the area that are experienced with the disorder, add research knowledge concerning the disorder and lend support to the process.
Treating ME/CFS also presents a significant number of challenges for patients and physicians. As yet, there is no known cause, cure or universal treatment for ME/CFS. Until a treatment is developed which will improve all the symptoms of ME/CFS, or correct the underlying cause, therapy is based upon the individual's presenting symptoms and treatment is mainly based on minimizing symptoms on a individual basis. This usually incorporates a trial and error regimen of prescription medicines in an effort to help relieve pain; sleep disturbances; digestive problems such as nausea; flu-like symptoms and, if present, depression and anxiety. Medications have mixed results and can be supplemented by alternative therapies. Alternative treatments include therapies such as acupuncture, tai chi and alternative food and herbal supplements.
Patients quickly recognize that lifestyles need to be altered. Symptoms and sensitivities may lead to changes in diet; exercise limitations; alterations in activities of daily living according to one's energy level; and sleep/rest management. All may require the assistance of professional clinicians, such as a dietitian, physical and/or occupational therapist, mental health professional and sleep therapist.