Well, that’s a good question. Let’s start with a couple “official” descriptions as a formal “definition” does not exist.
The acronyms are defined as follows:
CFS = Chronic Fatigue Syndrome
CFIDS = Chronic Fatigue Immune Dysfunction Syndrome
Like AIDS in the 80s, CFIDS is not yet recognized by major government entities (like the FDA) which means:
- Insurance will not cover traditional or nontraditional treatments
- Medical institutions do not spend research money on studying the complicated disease
- “Big pharma” largely ignore CFIDS since it is not (yet) a revenue generating opportunity
- Patients are left to treat and battle the effects of the disease on their own with the support of those wiling to care for them
- There is still a wealth of misinformation coupled with a small awareness factor
Here are some of the “suggested definitions” of CFS/CFIDS. Unfortunately until the disease receives more recognition and research in the States (US), a formal definition will not be agreed upon.
- Chronic Fatigue Immune Dysfunction Syndrome is also known as Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis or Myalgic Encephalopathy (ME). It is a complex, debilitating, and often disabling illness which affects multiple systems of the body. Most people with CFIDS experience profound exhaustion, post-exertional malaise, sleep disorder, neurological and flu-like symptoms, and cognitive problems such as difficulty thinking, processing, and remembering. The illness may last many months or years. Symptoms may vary in severity and may wax and wane. There is as yet no known definitive single cause.
- A person with CFS feels completely worn-out and overtired. This extreme tiredness makes it hard to do the daily tasks that most of us do without thinking — like dressing, bathing, or eating. Sleep or rest does not make the tiredness go away. It can be made worse by moving, exercising, or even thinking. A person with CFS may have muscle pain, trouble focusing, or insomnia (not being able to sleep). The extreme tiredness may come and go. In some cases the extreme tiredness never goes away.
- CFS is defined by two major criteria, chronic severe fatigue for at least six months not caused by a diagnosable disease or relieved with rest and at least four other specific symptoms that occur at the same time or after the development of severe fatigue
- No single cause of the illness has been determined. Current research indicates that there are likely multiple triggers resulting in the same set of symptoms. Many people report that their symptoms began following a flu-like illness; other people report that the disorder began spontaneously and symptoms became gradually worse. Physical trauma, genetics, immunological conditions, and possibly severe emotional distress appear to be related to some cases.
Should I go on? As you can see all “definitions” are incredibly vague, encompassing a wide range of symptoms that could apply to multiple groups of people at many different times in their lives. So with now official definition available, you can see what CFIDS is to me HERE.
An Easy To Understand Definition From BioCare Hospital HERE
My Summary of What Is CFIDS
With varying degrees of intensity and numerous viewpoints on cause and cure; CFS/CFIDS seems to be one of those “garbage disposal” diseases of the Western Medical System. Because there is not an agreed upon test or diagnosis or a proven way(s) to treat it, doctors are often hesitant to make any diagnosis or commonly misdiagnose. Patients usually endure years of inconclusive medical tests that take a huge burden on their financial well being; often causes stress factors in other areas of life as well.
After over 14 years of living with this illness, I have found this disease to be at first physically debilitating while later in the course of the my life it seems to have a profound effect on my emotional well-being as well. Constantly fighting a physical battle that no one believes you are fighting in the beginning turns into years of frustration and disappointment welling up inside you as you once again begin to fight back the CFS/CFIDS as it comes out of remission. The physical battle is more than most could handle, but adding the emotional element and social implications results in a life- altering disease that leaves patients wondering “What happened to the Old Me?”
Imagine watching someone you love dearly go through this battle everyday… that is the plight of a caregiver. The strength it takes them to be , as my mom puts it, “a constant cheerleader” is inspiring. I will let my mom describe this portion of the journey living with CFIDS in her blog posts.
So, What Is CFIDS? It’s something that turns you into a shell of the person you once were. A disease that affects not only the patient but the caregiver and many of those around them as well. It’s a relentless condition that rears its head in the most extreme form when you are least expecting it. It’s what keeps you from having the life you strive everyday for. It’s what took away the things you thought you wanted for so long. It is what keeps you from physically being able to achieve your dreams or just day to day activities.
CFS/CFIDS is also the reason I have found a NEW purpose in life. It may not be the original road I thought my life would take, but I am passionate that CFS/CFIDS has brought me to a place where I can help so many others suffering silently from this unforgiving disease. CFIDS is what made me realize the importance of supportive friends and family and the negative affects people of other descriptions can have on your physical and emotional well being. It brought me to have the most amazing friends and most supportive mother anyone could ever ask for. And without CFIDS, I probably wouldn’t have taken the time to notice all this.