FM/CFS/ME RESOURCES - FAQ's About CFS/ME

 

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FAQ'S ABOUT CFS/ME

The following are questions and answers regarding Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Contact me if you have a question you'd like answered. Select from the table below for more FAQ's.

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What Is CFS/ME?

CFS/ME stands for Chronic Fatigue Syndrome-Myalgic Encephalomyelitis. CFS/ME is a serious, disabling and chronic neuro-immune illness affecting approximately 1 million people in the United States and as many as 17 million people worldwide.

CFS/ME is characterized by debilitating fatigue (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.

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What Causes CFS/ME?

The cause of the illness is not yet known. Current theories are looking at the possibilities of neuroendocrine dysfunction, viruses, environmental toxins, genetic predisposition, or a combination of these. For a time it was thought that Epstein-Barr Virus (EBV), the cause of mononucleosis, might cause CFS/ME but recent research has discounted this idea. The illness seems to prompt a chronic immune reaction in the body, however it is not clear that this is in response to any actual infection - this may only be a dysfunction of the immune system itself.

Scientists have discovered a potential retroviral link to CFS/ME. Researchers from the Whittemore Peterson Institute, the National Cancer Institute, and the Cleveland Clinic, report this finding online in the Oct. 8, 2009, issue of Science.

"We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a major step in the discovery of vital treatment options for millions of patients," said Judy Mikovits, PhD, director of research for WPI and leader of the team that discovered this association.

Researchers cautioned, however, that this finding shows there is an association between XMRV and CFS but does not prove that XMRV causes CFS. There is still a long way to go, but at least now it can be proven that CFS/ME is indeed a real illness.

Many medical observers have noted that CFS/ME seems often to be "triggered" by some stressful event, but in all likelihood the condition was latent beforehand. Some people will appear to get CFS/ME following a viral infection, or a head injury, or surgery, excessive use of antibiotics, or some other traumatic event. Yet it's unlikely that these events on their own could be a primary cause.

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Who Gets CFS/ME?

CFS/ME occurs four times more frequently in women than in men, although people of either gender can develop the disease. The illness occurs most often in people in their 40s and 50s, but people of all ages can get CFS/ME.

Children and adolescents are not immune to its effects. Most studies indicate that girls are more apt to develop CFS/ME than boys, although one study found the incidence of the syndrome to be equal. According to a 1999 study, half of the children and adolescents with CFS/ME also suffer psychiatric disorders, primarily anxiety, and also depression.

CFS/ME occurs in all ethnic and racial groups, and in countries around the world. Research indicates that CFS/ME is at least as common among African Americans and Hispanics as it is among Caucasians. People of all income levels can develop CFS/ME.

CFS/ME is sometimes seen in members of the same family, but there's no evidence that it's contagious. Instead, there may be a familial or genetic link. Further research is needed to explore this.

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How Is CFS/ME Diagnosed?

Doctors find it difficult to diagnose CFS/ME because it has the same symptoms as many other diseases. When talking with and examining you, your doctor must first rule out diseases that look similar, such as multiple sclerosis and systemic lupus erythematosus in which symptoms can take years to develop. In follow-up visits, you and your doctor need to be alert to any new cues or symptoms that might show that the problem is something other than CFS/ME. CFS/ME is diagnosed as a process of ruling out everything else!

Diagnostic Criteria

The criteria for diagnosing CFS were officially defined by the CDC in 1988 and revised in 2001. The Oxford criteria differ slightly. The British criteria insist upon the presence of mental fatigue, although the American criteria include a requirement for several physical symptoms, reflecting the belief that CFS has an underlying immune or infectious pathology.

Centers for Disease Control's Criteria for Chronic Fatigue Syndrome Clinically evaluated, unexplained, persistent, or relapsing fatigue that is:

  • Of new or definite onset
  • Not a result of ongoing exertion
  • Not alleviated by rest
  • Results in a substantial reduction in previous levels of occupational, social, or personal activity

Four or more of the following symptoms that persist or recur during 6 or more consecutive months of illness and that do not predate the fatigue.

  • Self-reported impairment of short-term memory or concentration
  • Sore throat
  • Tender lymph nodes
  • Muscle pain
  • Multi joint pain without swelling or redness
  • Headaches of a new type, pattern, or severity
  • Unrefreshing and/or interrupted sleep
  • Post exertion malaise (a feeling of general discomfort or uneasiness) lasting more than 24 hours

Exclusion Criteria:

  • Active, unresolved or suspected disease that is likely to cause fatigue
  • Psychotic, melancholic, or bipolar depression (but not uncomplicated major depression)
  • Psychotic disorders
  • Dementia
  • Anorexia or bulimia nervosa
  • Alcohol or other substance misuse
  • Severe obesity

Oxford (British) Criteria for Chronic Fatigue Syndrome Severe disabling fatigue of at least a 6-month duration that:

  • Affects both physical and mental functioning
  • Is present for more than 50% of the time
  • Other symptoms, particularly myalgia and sleep and mood disturbances, may be present

Exclusion Criteria:

  • Active, unresolved, or suspected disease that is likely to cause fatigue
  • Psychotic, melancholic, or bipolar depression (but not uncomplicated major depression)
  • Psychotic disorders
  • Dementia
  • Anorexia or bulimia nervosa

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Does Stress Make CFS/ME Worse?

Yes, too much stress can cause additional problems for people with CFS/ME. It is often listed as a factor in causing flares. Most specialists recommend minimizing stress.

If you have ongoing problems with depression or anxiety, consider seeking help for them from your family doctor or a psychiatrist. Anxiety and depression may arise as symptoms of Fibromyalgia and in turn cause insomnia, leading to worsening of the underlying problem. Relaxation techniques or a chronic pain program can also help lower your stress level.

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How Do I Find a Support Group?

Search our Support Group Database to find local support groups. The groups in this section meet off the computer, usually in an area near your home or workplace. They discuss the challenges of living with CFS/ME. They offer an upbeat atmosphere, focusing on social support, rather than therapy.

Many groups have guest speakers from the medical community who offer news on latest research, and medications. The major objective of most support groups is to provide a warm and caring environment where the illness is not questioned and where patients are accepted. Knowing that others share this journey offers comfort and reassurance.

Search our listings of Online Support Groups to find a support group that meets on the computer only. These groups offer help for people unable to leave home for an actual support group meeting. Many of these groups offer monthly newsletters, research information, and forums for people with CFS/ME. Groups can vary in size. Many groups have a family type atmosphere providing a warm and caring environment where the illness is not questioned and where patients are accepted. Knowing that others share this journey offers comfort and reassurance to many people with CFS/ME.

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Is CFS/ME Contagious?

To date, there is no published evidence that CFS/ME is contagious or transmissible from person to person. Contagious diseases tend to appear in clusters, but the overwhelming majority of CFS/ME cases appear sporadically. Furthermore, large studies conducted by the Center for Disease Control (CDC) have found no increased risk for CFS among the other members of households that have a person with CFS/ME.

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How Long Can CFS/ME Last?

People with CFS/ME may improve after a few months, or after many years, or never at all. They may reach a plateau at some constant level of health, or may progressively decline. Often, the symptoms change over time, or cycle irregularly. Relapses are common, especially after stressful life events or additional illness. Exertion can cause not merely a relapse, but a worsening of overall health. Undiagnosed cases of CFS/ME often worsen as the sufferer attempts to return to a 'normal' level of activity, only to make their condition worse through exertion.

Of those CFS/ME patients moderately to severely affected, many may expect to remain so for an indeterminate period, even for the duration of their life. It is not known whether any patients truly "recover" entirely from the illness, or merely recuperate enough to regain previous levels of activity.

CFS/ME can prove to be fatal, as in the case in the UK of Sophia Mirza, where the coroner recorded a verdict of "Acute anuric renal failure due to dehydration arising as a result of CFS/ME". The pathologist said,

"ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia."

It should be noted that inflammation of the 'muscles' is erroneous, as opposed to the central nervous system inflammation, as this has never been a criteria for a ME diagnosis. CFS/ME has been linked to heart damage and cardiac arrest among other causes of death; research has not yet progressed to determine whether this is in fact the case, and some patients die from co-morbid diseases. To date there is one study on CFS/ME life expectancy.

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Can CFS/ME Be Cured?

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.

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What Research Is Currently Going On?

There is a great deal of research going on, regarding the possible cause of CFS, many of its symptom mechanisms, possible biological markers, treatments, and epidemiology.

  • Scientists have discovered evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS/ME. This discovery could be a major step in the discovery of vital treatment options for millions of patients," said Judy Mikovits, PhD, director of research for WPI and leader of the team that discovered this association. Researchers cautioned, however, that this finding shows there is an association between XMRV and CFS/ME but does not prove that XMRV causes CFS/ME. The scientists provide a new hypothesis for a retrovirus link with CFS/ME. The virus, XMRV, was first identified by Robert H. Silverman, PhD, professor in the Department of Cancer Biology at the Cleveland Clinic Lerner Research Institute, in men who had a specific immune system defect that reduced their ability to fight viral infections.

  • Dr. Mark Demitrack (Univ. of Michigan) and Dr. Stephen Straus (NIH) and others are studying the dysfunction of the hypothalamic-pituitary-adrenal axis as being a possible major explanation for CFS.

  • Prof. Robert Suhadolnik (Temple Univ., Philadelphia) is exploring a possible bio-marker for CFS found in patients' blood.

  • Dr's. Hugh Dunstan and Timothy Roberts (Univ. Newcastle, Australia) are researching a possible biological marker found in urine.

  • Dr. Peter Rowe (Johns Hopkins Univ.) is studying the possible link between CFS and neurally mediated hypotension.

  • Dr. Anthony Komaroff (Harvard Univ.) and Dr. Dharam Ablashi (Georgetown Univ.) are researching the possible roles of human herpes virus six and epstein-barr virus.

  • Dr's. Andrew Lloyd, Ian Hickie, Denis Wakefield and Andrew Wilson (Sydney, Australia) are making broad investigations into many aspect of CFS.

  • Dr. W. John Martin (Univ. So. Cal.) is studying the "Stealth" virus. Dr. Michael Holmes (Univ. Otago) is researching another mysterious, virus-like particle.

  • Dr's. Nancy Klimas, Roberto Patarca (of Univ. Miami) and Jay Levy (UCSF) are investigating immunological abnormalities.

  • Dr's. Paul Cheney, Charles Lapp and Jay Goldstein are studying various treatments.

  • Dr's. Simon Wessely, Michael Sharpe and other British psychiatrists are exploring the value of cognitive behavior therapy for CFS.

  • The Center for Disease Control team led by Dr's. Keiji Fukuda and William Reeves are undertaking prevalence studies.

These are just a few of the more prominent studies now on-going.

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Is CFS/ME Genetic?

William Reeves, M.D., director of CFS research at the CDC said, "For the first time ever, we have documented that people with CFS have (variations in) certain genes that are related to those parts of brain activity that mediate the stress response."

Also, people with the syndrome have differences in genetic activity levels that affect the way they respond to stress accumulated over a lifetime, Dr. Reeves said in a media telebriefing to announce 14 research papers arising from a CDC study in Wichita, Kan.

The findings could lead to better diagnostic tools for the syndrome, which is often regarded as ill-defined, and to better treatments, including both cognitive and behavioral therapies and new drugs, Dr. Reeves said.

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How Does CFS/ME Relate To Pregnancy?

If anything, in many cases the illness seems to be lessened for the mother during pregnancy, and no problems have been noticed with the children. Another aspect to consider is that the responsibilities of parenthood are many and are stressful, and this should be considered when planning a family.

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How Do I Handle Problems About My Job?

If your work is, or will likely be, affected by your illness, educate your boss about your condition. Do this soon. You may need their support later when more problems may arise, and it will be easier to educate them while you are still relatively productive and "credible".

Understand that you might have to make some severe changes: a change of job, or perhaps an involuntary loss of your job and a shift to disability benefits.

Beware of the trap of losing important disability benefits if you switch to part time work. Many CFS/ME patients whose health was spiraling downwards had switched to part-time work to preserve their place with their employer. Later, when their health deteriorated even more and they needed to seek disability benefits, they found out too late that those benefits for a part-time employee did not include a livable income, whereas if they had gone straight from full-time to disability, the disability payments were much more livable. Be careful.

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Is POTS Associated With CFS/ME?

In a recent study, Fifty-nine patients with CFS/ME (Fukuda criteria) and 52 age- and sex-matched controls underwent formal autonomic assessment in the cardiovascular laboratory with continuous heart rate and beat-to-beat blood pressure measurement (Task Force, CNSystems, Graz Austria). Haemodynamic responses to standing over 2 min were measured.

POTS was defined as symptoms of orthostatic intolerance associated with an increase in heart rate from the supine to upright position of >30 beats per minute or to a heart rate of >120 beats per minute on standing.

Maximum heart rate on standing was significantly higher in the CFS/ME group compared with controls (106 +/- 20 vs. 98 +/- 13; P = 0.02). Of the CFS/ME group, 27% (16/59) had POTS compared with 9% (5) in the control population (P = 0.006). This difference was predominantly related to the increased proportion of those in the CFS/ME group whose heart rate increased to >120 beats per minute on standing (P = 0.0002). Increasing fatigue was associated with increase in heart rate (P = 0.04; r(2) = 0.1).

It was concluded that POTS is a frequent finding in patients with CFS/ME. Researchers suggest that clinical evaluation of patients with CFS/ME should include response to standing. Studies are needed to determine the optimum intervention strategy to manage POTS in those with CFS/ME.


Source

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Do People Recover From CFS/ME?

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.

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