Did You Know? Frequently Asked Questions regarding Neuro-Immune Disease

This section is created to provide answers to some common queries about Myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS). Each link opens up a new window in a pop-up.

• What is ME/CFS? [view answer...]

  ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ME/CFS is a serious, disabling and chronic neuro immune illness affecting approximately 4 million people world-wide.
  
  ME/CFS is characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV).
  
  The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.
  
  The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.

• How is ME/CFS diagnosed? [view answer...]

  To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there a specific treatment.
  
  For Diagnosis: a patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7. (Source: Canadian Guidelines definition; see CFS/FM Symptom Checklist by Katrina Berne, PhD and the Canadian ME/CFS guidelines, both PDF documents)
  

  1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
  2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period—usually 24 hours or longer.
  3. Sleep Dysfunction: There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
  4. Pain: There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.
  5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances, e.g., spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload 1 phenomena: cognitive, sensory, e.g., photophobia and hypersensitivity to noise—and/or emotional overload, which may lead to "crash" 2 periods and/or anxiety. Carruthers et al. 11
  6. At Least One Symptom from Two of the Following Categories:
  • Autonomic Manifestations: orthostatic intolerance—neurally mediated hypotenstion (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.
  • Neuroendocrine Manifestations: loss of thermostatic stability—subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change—anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.
  • Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

  7. The illness persists for at least six months. It usually has a distinct onset, although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.

  
  CFS is diagnosed as a process of ruling out everything else!

• Who is at risk? [view answer...]

  Men, women, young teens, and even children are at risk of developing ME/CFS. ME/CFS occurs in all races and at all economic levels. Women are affected at a 3:1 ratio.

• Is ME/CFS contagious?[view answer...]

  Quite possibly. Subgroups of patient have been associated with "outbreaks" of disease and viruses such as EBV, HHV6 and enteroviruses. However, because everyone infected with these viruses does not get ME/CFS, we know that there are genetic and environmental contributions to the disease as well.

• Is ME/CFS genetic? [view answer...]

  Several studies suggest that there may be a genetic component to ME/CFS. This is not surprising since ME/CFS seems to involve immune dysfunction to some degree, and immune-related illnesses often have a genetic component. The evidence on this point is not clear. And the fact that there seem to be cluster outbreaks of this illness seems to argue against genetics as being the sole factor.

• Do people recover from ME/CFS? [view answer...]

  Yes and no. Some people do recover but recovery can be a relative term. The majority of patients live with some degree of disease. This is because we have not done enough research to learn the underlying cause and find biomarkers for subgrouping patients. The disease can be relapsing and remitting, that is people will recover and relapse sometimes years later as the symptoms are treated and not the underlying cause. Estimates are that 80% of patients do not get better. According to US statistics provided by the Centres for Disease Control (CDC), only 4% of patients had full remission (not recovery) at 24 months.

• Is there a cure for ME/CFS? [view answer...]

  Not yet...but there are Immune modulating treatments and antivirals/antimicrobials that have been used successfully, if the patient is given a complete examination with tests to identify immune dysfunction and microbial infections treatment strategies can greatly improve if not cure the patient. In addition, there are symptomatic therapies that have shown to be helpful in alleviating symptoms. With continued research, treatment and prevention strategies that treat the underlying basis of disease can be developed

• Is the government doing enough for ME/CFS? [view answer...]

  NO. The Centers for Disease Control (CDC) estimates from 1-4 million people in the U.S. have chronic fatigue syndrome (ME/CFS) and that approximately 80% of chronic fatigue syndrome (ME/CFS) cases in the U.S. are undiagnosed. The average annual costs per family, including financial losses due to unemployment, are about $25,000 a year. Overall chronic fatigue syndrome (ME/CFS) is believed to cost the US economy at least $25 billion dollars a year and perhaps much more. CDC studies indicate that chronic fatigue syndrome (ME/CFS) patients as a group have disability rates similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Despite its prevalence, severity and high economic costs chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.