Fighting for a Fair Name

For the past 20 years, the disabling disease, Chronic Fatigue Syndrome (CFS), has not been taken seriously by society, the medical community, and the CDC (Center for Disease Control). In 1998, William Reeves, Director of the CDC, reported that funding earmarked by Congress for Chronic Fatigue Syndrome reasearch were being spent on unrelated CDC projects.

In the United Kingdom, Chronic Fatigue Syndrome has been named "Myalgic Encephalomyelitis", or M.E. In the United States, Chronic Fatigue Syndrome has also been referred to as "Chronic Fatigue Immune Dysfunction Syndrome" or CFIDS. This is the name that I have been referring to on my blog Fighting Fatigue.

The big controversary over the name Chronic Fatigue Syndrome has been that Chronic Fatigue Syndrome does not fully represent the nature of the illness and it trivializes the realities of the disease. WIth only "fatigue" being in the name, it does not mention all of the other problems that arise from those who suffer with Chronic Fatigue Syndrome (CFS). Chronic Fatigue Syndrome's main and most prominent symptom may be fatigue but that is only where it begins.

Chronic Fatigue Syndrome includes all of the following symptoms:

Word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. Patients may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; 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 and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.

Chronic Fatigue Syndrome also involves dysfunction of the hypothalamus and pituitary gland causing hypythyroidism and other major hormonal deficiencies. So as you can see from all of the symptoms and problems listed above, Chronic Fatigue Syndrome does not do justice to what we deal with on a daily basis.

Some of the name recommendations currently being made on ImmuneSupport are:

Myalgic Immunodysfunction Encephalomyelitis (MIDE)
Chronic Immune Dysfunction Syndrome (CIDS) - the problem with this is that it makes you think of SIDS (Sudden Infant Death Syndrome)
Myalgic Encephalomyelitis (ME) - this is what CFIDS is called in the United Kingdom.
Multisystom Autonomic Dysfunction - (MFD)
Nightingale's Disease (after Florence Nightingale, who CFS Awareness Day is named.)
Neurondocrine & Immune Dysfunction(NID)
Immune Dysfunction Disease (IDD)

Some concerns among CFIDS sufferers:

They would like the word "syndrome" taken out since Chronic Fatigue Syndrome is a disease. Many wish to have the words "chronic" and anything that has a "tired" meaning taken out. If anyone would like to add their thoughts to the discussion, you can go to ImmuneSupport.com and put in your ideas.