CFS/ME FAQ's

CFS/ME FAQ's

There is nothing scarier than being told you have an illness that you've never heard of before. You're left wondering how it will effect you, what you will be able to expect, etc. The following frequently asked questions (FAQ's) are here to help you to understand CFS/ME better. If you have any questions you can always write to me!


What Is CFS/ME?

Chronic Fatigue Syndrome (CFS) Myalgic Encephalopathy (ME) is persistent debilitating fatigue of recent onset, with greatly reduced physical activity and some combination of:

• muscle weakness


• sore throat


• mild fever


• tender lymph nodes


• headaches


• depression, not attributable to any other known causes; it is of controversial etiology

Also known by various other names, CFS/ME is a syndrome (or group of syndromes) of unknown and possibly multiple etiologies, affecting the central nervous system (CNS), immune system, and many other systems and organs of the body. There is no simple diagnostic test; CFS/ME is a diagnosis of exclusion, although recent research indicates biological hallmarks of the syndrome, and a diagnostic test is predicted soon.


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 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.

A recent concept proclaimed by Prof. Mark Demitrack is that CFS is a generalized condition which may have any of several causes (in the same way that the condition called high blood pressure is not caused by any one single factor). It is known that stressors, physical or emotional, seems to make CFS worse.

Some current research continues to investigate possible viral causes including HHV-6, other herpes viruses, enteroviruses, and retroviruses. Additionally, co-factors (such as genetic predisposition, stress, environment, gender, age, and prior illness) appear to play an important role in the development and course of the illness.

Many medical observers have noted that CFS 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 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.


Who Gets CFS/ME?

CFS/ME occurs more often, but not exclusively, in women, possibly due to immunological factors or hormonal changes. CFS/ME is most easily diagnosed when formerly active adults become ill, but it has been reported in persons of all ages, including young children and particularly teenagers.


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. When other diseases are ruled out and if your illness meets other criteria as well, your doctor can diagnose you with CFS/ME.

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

Does Stress Make CFS/ME Worse?

Yes, too much stress can cause additional problems for people with FM/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.


How Do I Find a Support Group?

To find local support groups CLICK HERE. 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 FM and 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.

To find a virtual or online support group CLICK HERE. These groups meet online only. They 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 FM and/or 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 FM and/or CFS/ME.


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.


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.


What Are The Symptoms of CFS?

According to the 1994 International Case Definition the symptoms include:

• fatigue lasting for six months or longer that significantly affects lifestyle


• in addition, 4 or more of the following symptoms must be present [along with the debilitating fatigue]


• Postexertional malaise (lasting more than 24 hours)


• Sleep difficulties / unrefreshing sleep


• Impaired memory or concentration


• Muscle pain


• Multi-joint pain


• Headaches of new type, pattern, or severity


• Sore throat


• Tender lymph nodes in the armpit and neck

Click here for more information about symptoms


Can CFS/ME Be Cured?

There is no cure for CFS/ME at this time. In fact, there is no treatment for CFS/ME, only treatments for the symptoms of CFS/ME, such as headaches, sore throats or sleep problems. Some patients partially recover, a few may fully recover, while others may find their symptoms get worse. Others experience periodic Relapses. Since little is known about the cause and progression of CFS/ME, the course of your individual illness cannot be predicted. It is important to realize that people with CFS/ME can be helped with appropriate treatment.