An Illness That's Hard To Live With—Or Define .

Discussion in 'Fibromyalgia Main Forum' started by tansy, Mar 4, 2011.

  1. tansy

    tansy New Member

    Article by Leonard A Jason in the Wall Street Journal.

    Highlighting the difficulties in research due to ambiguity of definitions.
  2. tansy

    tansy New Member

    From The Wall Street Journal, 5 March 2011 (story by Leonard A Jason, professor of psychology and director of the Center for Community Research at DePaul University, Chicago)

    In 1990, after a bout with mononucleosis, I contracted chronic fatigue syndrome. For month after month, I felt as if I had the worst case of the flu, and I had little stamina to do even the most basic life activities. I had to leave my work as a psychology professor for a year and a half.

    I was lucky to have a strong support system and an understanding work setting—something many other patients don’t have—but I discovered just how mysterious and frustrating the illness is. I also realized how easy it is for people to confuse the experience of everyday tiredness with the incapacitating illness known as CFS.

    Fatigue-related illnesses have periodically appeared over the past 150 years. Some have mistakenly compared CFS to what was called neurasthenia in the late 1800s—a condition that was thought to be caused by reading newspapers and, in the case of women, by education. But by the early 1900s, many physicians had concluded that neurasthenia was probably due to psychiatric conditions, and it was eventually discredited.

    Clustered outbreaks of another fatiguing illness attracted attention in 1934 at the Los Angeles County Hospital, and then at a British hospital in 1955. Both outbreaks involved the hospitals’ medical staffs. Some physicians believed both outbreaks might have been a version of polio. The exact cause still remains unknown.

    In the late 1950s, Dr. Melvin Ramsay in the U.K. began using the term myalgic encephalomyelitis to describe an illness marked by muscle fatiguability after minimal exertion and symptoms involving the central nervous system, such as impaired memory and concentration. Patients often experience a sudden onset, and proponents believed there was a medical cause.

    In the 1980s, in the Lake Tahoe region of Nevada, an epidemic of a debilitating disease occurred. Infectious disease physicians at the Centers for Disease Control later labeled the disorder chronic fatigue syndrome. Patients thought the name belittled the seriousness of the condition and argued that it placed too much emphasis on fatigue when the illness is also typified by severe symptoms such as memory loss. Some used the analogy that if bronchitis or emphysema were referred to as “chronic cough syndrome,” those illnesses would be trivialized too.

    Because of my experience with chronic fatigue syndrome, I decided to conduct my own research. In a 1999 study, my research team looked at the effect of the condition’s name on a group of medical students and residents. We found that a more technical name is taken more seriously. We gave case studies of patients to the trainees, described the disease as chronic fatigue syndrome, Florence Nightingale disease or myalgic encephalopathy to different groups, and then asked the trainees about prognosis, illness cause and treatment. Those who were told the condition was called myalgic encephalopathy were much more likely to give the patient a poor prognosis and to attribute the illness to a medical cause. Many activist groups have now begun using other names for both their organizations and the illness, including myalgic encephalomyelitis and neuroendocrine immune disorder.

    Another challenge has been defining the disease. In 1994, the research community began using what is called the Fukuda criteria to determine who is afflicted. But the criteria were too vague and opened the possibility that someone without the two core symptoms (extreme exhaustion following physical or mental activity lasting more than 24 hours, and persistent or recurring impairment in short-term memory or concentration) could still be defined as having chronic fatigue syndrome.

    In 2005, the CDC revised the Fukuda criteria in an attempt to identify patients with more precision. My research team believes the new criteria are still too vague and could potentially include people with primary depression. This ambiguity over definitions has made it difficult for researchers to pinpoint a biological cause. When investigators compare very different samples, it is difficult, if not impossible, to replicate findings from one lab to another. And when consistent biological findings do not emerge, investigators might inappropriately conclude that CFS is only a psychiatric problem.
    [This Message was Edited on 03/05/2011]
  3. Mikie

    Mikie Moderator

    The lack of biological markers, or even consistent triggers, have led to the inability of researchers to define our illness(es) or even to give appropriate name(s) to describe what ails us. That so many immune and autoimmune illnesses seem to affect us at the same time, and have overlapping symptoms, further complicates things. Even after all this time, we still don't even know what questions to ask.

    What does seem to happen in many cases is that our illnesses are triggered by some kind of infection--viral, bacterial, or fungal. Not everone starts out this way, however; some have their illnesses triggered by stress, trauma, or exposure to toxins. One thing which does seem to connect our illnesses is a failure by our immune systems, at some point, to protect us. That these illnesses can run in families suggests a genetic factor.

    Some of us seemed perfectly healthy until something triggered our illnesses. Some of us can look back and see things in our childhoods which now seem abnormal in hindsight. Some of us were able to overcome illnesses and traumas only to finally find ourselves unable to recover one more time.

    One thing is certain: We suffer from debilitating exhaustion and any attempt to exert ourselves can lead to inability to do anything. This is the most prevalent symptom of our illnesses. Some of us suffer from debilitating pain as well. Is this part of CFIDS/ME or is it FMS coexisting with out CFIDS/ME.

    I've been asking myself these questions for 11 years now and reading everything I can get my hands on. I have used treatments which have allowed me to recover enough to work part time. Unfortunately, it now appears that I have some kind of Sjogren's-like condition and the exhaustion has returned. I had to quit working in July.

    As you know, I will be seeing a new doc who specializes in our illnesses and considering peptide injections. It appears to be the only thing left to try. As always, I will keep y'all informed of what I find out. I am as frustrated as everyone else at the lack of progress made in treating, or even defining, our illnesses. It reminds me of what was once said of pornography: I may not be able to define it but I certainly know what it is when I see ("have" is my substitution here) it. No doc nor researcher could possibly imagine what our illnesses are like unless they are afflicted.

    Do I sound negative? Yes and no. I am a realist and yet, I never give up hope. I have tried things which have helped me but have not returned me to what I would consider "normal." I was happy just to be managing my illnesses and energy. Now, I feel as though I'm back at square one. Still, I've progressed before and believe I can again. I think we all have to keep hope alive. I continue to pray for all of us.

    Love, Mikie

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