FM/CFS/ME RESOURCES - The Course CFS/ME Takes

 

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THE COURSE CFS/ME TAKES

Some cases of CFS/ME start gradually, but the majority start suddenly, often triggered by the flu or some other illness. People with CFS/ME may get better after a few years or many years or may not get better at all. No one is sure whether anybody is truly cured or whether their illness has just subsided enough for them to live a more normal life.

Select from the links below to view the course CFS/ME takes, and what you might expect.

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Sudden Onset

Most people with CFS/ME report a sudden, drastic start to their illness. Sometimes people can remember a specific day or even hour when they first got sick. Often, the illness starts with, or is triggered by, another illness. Many people report getting a case of the flu which slowly evolves into CFS/ME. Other people have had a case of Lyme disease which has been treated adequately, but the symptoms change from those of Lyme to those of CFS/ME. Other triggers include car accidents, moving house, and stressful life situations. Some patients say they felt unusual or uneasy for a short period (days or weeks) before the onset.

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Gradual Onset

The other cases have a very slow, gradual onset, sometimes spread over years. People with gradual onsets often don't realize there is anything wrong for years because it happens so slowly. There is no standard course for CFS/ME. Everyone diagnosed with CFS/ME has had it for at least six months; they would not be diagnosed otherwise. It is possible that not all cases of CFS/ME are chronic: some people may have CFS/ME for four months and never get diagnosed. It's also possible that there are people who have CFS/ME whose level of disability is so low they never get diagnosed. People with CFS/ME may get better after a few years 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 most prominent symptoms change over time or cycle through time. No one is sure whether anybody is truly cured or whether their illness has just subsided enough for them to live a more normal life. Relapses are common, especially after stressful life events.

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Activity Levels

Some people are more limited than others. The sickest are bedbound, while some people are self-reliant, and some are able to work or attend school. Some people with CFS/ME can push themselves to do extraordinary things but feel much worse afterward. One notable CFS/ME sufferer is soccer legend Michelle Akers, who reported struggling with the illness for much of the later years of her career. However, extreme sufferers like those confined to bed felt that an active professional athlete "poster child" like Akers only helped to trivialize the syndrome in the eyes of the public (the infamous "Michelle Akers has it and she plays soccer, so why are you complaining?" reaction), and thereby made it much more difficult for those who are highly incapacitated to be taken seriously.

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Payback Effect

One of the most common and recognizable aspects of CFS/ME is what is called "post-exertional malaise," or, more colloquially, the "Payback Effect." When people with CFS/ME exert themselves, their symptoms get worse afterward. Exertion could be physical or mental exercise, doing routine tasks, such as driving, cleaning, or eating, or handling a stressful situation. The harder the exertion and the longer it lasts, the worse the symptoms will be afterward. The payback effect leads to a few typical patterns, sometimes called "The Yo-Yo Pattern" and "The Downward Spiral."

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The Yo-Yo Pattern

The Yo-Yo Pattern happens when people work very hard at some activity, but only on good days. This leads to worse symptoms which prevents them from working for the next few days. When they feel better, they work extra hard to make up for the bad days - or just because they're so excited to feel good - but this leads to them feeling bad again.

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The Downward Spiral

The Downward Spiral happens whenever feeling bad puts a patient in a situation that makes them feel worse. This is similar to the yo-yo, but in the downward spriral, people don't have time to recover on bad days. Here are some examples:

  • A person works very hard one day at work. This makes them feel worse, which leads to them not working as effectively. In order to catch up, they work harder, which leads to them feeling worse.

  • A person loses their appetite when they don't sleep well because they're so tired, they don't realize they're hungry. Then, they don't sleep well at night because they wake up very hungry.

  • A person does not feel well, and therefore cancels a date with a friend. This leads to them feeling depressed and sleeping poorly, which leads to them cancelling more dates.


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Sources:
  • Clinical Observations of Central Nervous System Dysfunction in Post infectious Acute Onset ME / CFS. B Hyde A Jain. In. The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome. ed: BM Hyde, J Goldstein, P Levine pub: The Nightingale Research Foundation, Ottawa, Canada, 1992.

  • Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994;121:953-9. PMID 7978722.

  • Holmes GP, Kaplan JE, Gantz NM, Komaroff AL, Schonberger LB, Straus SE, Jones JF, Dubois RE, Cunningham-Rundles C, Pahwa S, et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med 1988;108:387-9. PMID 2829679.
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