Patients: Newly Diagnosed
We're Here and We Understand
If the experience of the majority of persons with chronic fatigue syndrome (CFS), is true for you, the diagnosis of your illness comes as both a relief and an added stressor in dealing with your health. The months of declining health and function, puzzling and changing
symptoms and uncertainty about future abilities have almost certainly been nightmarish.
The diagnosis of CFS may relieve fears that you were going crazy, becoming a hypochondriac or even dying. Now that you have a diagnosis, it is hoped that you can regain feelings of control and empowerment by becoming informed about CFS and partnering with your health care provider to determine a course for treatment and illness management.
Sorting through the vast literature about CFS can itself be a
challenge. On this website we strive to answer the most frequently asked questions and provide
information that will help you become informed, without being too overwhelmed.
You may find that this diagnosis carries with it stigma and skepticism from some people - usually those who have little or no accurate facts. This can be a particularly challenging part of coping with the illness. By sharing correct information, you may feel empowered and better able to cope with the changes CFS brings.
Some Basic Facts About CFS
CFS is a serious and complex illness that affects many different body systems. No cause or cure has been found yet. Treatment is aimed at improving symptoms that are present. With good medical care, improvement in symptoms, functioning and quality of life are possible. A more thorough description of the illness is available in our CFS Fact Sheet.
The scientific community continues to actively research CFS. Theories currently being explored focus upon central nervous system defects, neuroendocrine abnormalities, immune system dysfunction and infectious agents. Researchers are also investigating possible treatments, prognosis and the role of stressors (infection, environmental exposures, overwork, emotional triggers, etc.) in illness onset and perpetuation of symptoms.
It is estimated that at least one million people in the United States have CFS. Women are affected more
than men; African Americans and Hispanics may be at greater risk than whites; and adults have higher rates of illness than children. Of note is the fact
that CFS is a global illness - it is not confined to the U.S. and research is occurring in several other countries.
The Centers for Disease Control and Prevention (CDC) facilitated the revision of the case
definition for CFS in 1994 to establish symptom guidelines that identify the illness, which include disabling fatigue for at least six months and four of eight other specific symptoms. This case definition was developed to guide research on CFS, but it is generally used by health care providers to help make the diagnosis. However, health care providers may not be as strict in their use of the guidelines as researchers. For instance, if a patient has three of the eight symptoms from the case definition and several more that are common to CFS, the provider will likely make a CFS diagnosis.
Symptoms of CFS are highly variable and fluctuate in severity. In addition to the eight primary symptoms listed by the CDC, examples of other common symptoms are visual disturbances, chills and night sweats, shortness of breath, dizziness and balance problems, gastrointestinal problems, chest pain, allergies or skin rashes.
By increasing your knowledge of CFS, you can be an active participant in your medical
care. Candid discussions with your health care provider are necessary to ensure satisfactory management of the illness. You may wish to communicate your knowledge about CFS with your provider and offer to share educational resources that could be helpful for them.
Living with a chronic disease is not easy for anyone involved - the person who is ill, as well
as family and friends. Information and support is available and there are probably others in your community who
can help. Becoming an Association member and visiting the Association's Web site frequently can keep you informed of progress and ease feelings of isolation - both important to regaining a sense of control over your life.
To complement the wealth of information available on the Association’s websites, we offer free, downloadable Fact Sheets on a variety of topics to help people better understand the complex nature of CFS, engage in more meaningful conversations with their health care providers and make informed choices about CFS-related decisions. Easily reproducible, these Fact Sheets are ideal for distribution to health care professionals, family members and the general public.
To stay informed about CFS matters important to PWCs and those who care about them, sign up for Research1st News, the Association's free monthly e-newsletter. You can also find a supportive community and daily updates at the Association's Facebook page at http://www.facebook.com/CFIDS.
Updated October 12, 2012