Most people who are diagnosed with ME/CFS want to know when they will recover. Will ME/CFS last a year? Two years? Ten years? Or is it permanent?
Unfortunately, there is no definitive answer to this question. Doctors with little experience with ME/CFS may tell their patients anything from: “Go home and rest and you’ll be better in a few weeks” to “Nobody recovers.” Physicians with more experience, however, tend to be more circumspect. The reason for their caution is that there is simply too much variation from case to case and far too little epidemiological information to be able to predict outcomes.
ME/CFS is a notoriously unpredictable illness. Some people recover completely within one or two years and can return to their former lives. Others improve enough to return to work, but must make modifications of their lifestyles. The majority of those with ME/CFS learn to plan their lives within the parameters of symptoms that wax and wane. A few must adjust to long periods of illness, or “plateaus,” with little or no improvement. There is also a minority of patients who do not show improvement and may even decline over time.
Recovery times vary from less than a year (although these short-term cases go largely unreported and therefore never make it into statistical tables) to decades. However, statistics reported by physicians are highly individualized, with the more renowned ME/CFS specialists – who see the most severe cases – giving the longest recovery rates, and general and family practitioners the shortest. Most physicians tell their patients that ME/CFS, generally speaking, is a lengthy proposition—a matter of years, not months.
The prospect of a very long illness is dismal, which is why the diagnosis is often received with profoundly mixed feelings. The only bright spot in the picture is that recovery does not necessarily correlate with duration of illness. Dr. Dedra Buchwald, a physician in Seattle, concluded after a five-year study of local patients with ME/CFS, that duration of the illness does not correlate with outcome.
Significant improvement and functional recovery are possible even after many years of illness. By functional recovery, physicians mean a return to normal life, with accommodations. While functionally recovered patients may not return to lifestyles as active as those they enjoyed before becoming ill, they are able to work, engage in social activities, and fully participate in life. There are even documented cases of long-term sufferers who have recovered completely. One ME/CFS patient from North Carolina experienced full recovery after 19 years of illness. And Dean Anderson, in a personal account, says he did not even begin to see an improvement until five years had passed (CFIDS Chronicle, Winter 1996).
While there are few reliable long-term studies of ME/CFS patients, those which have been completed are encouraging. In 2007 Matthews and Komaroff published a study in which 234 ME/CFS patients were assessed for physical and mental impairment between 1991 and 2002. This study found that physical function tended to improve for many patients over time, especially for patients between the ages of 18 and 60, and for women. Physical function did not deteriorate with time, despite the fact that they were aging. No deterioration of mental function was noted.
Although a lack of deterioration may seem cold comfort for those who are significantly disabled by the illness, for most people with ME/CFS, especially those with severe cases, the possibility of “substantial” or even “partial” recovery is cause for celebration. The Komaroff study also addresses one of the primary concerns of those with ME/CFS, which is that simply having the illness will cause long-term degeneration.
Those who have a “flu-like” onset eem to experience the highest rate of recovery. In a study by Masuda et al, ME/CFS patients with viral onset seemed to have the best prognosis. After two years, eight out of nine viral onset patients had returned to work. Of the nine patients with non-infectious onset, only three had returned to work. All patients received the same treatments.
The best outcomes are seen in children and in those with milder cases. In a 13-year follow-up study of 35 children with ME/CFS, 80% reported full recovery. However, 20% of those children (7) were still chronically ill, a percentage that roughly parallels chronic, severe cases in the adult population (25%).
Those with early diagnoses and who seek appropriate treatment tend to improve more quickly. Dr. Lapp, Dr. Teitelbaum, Dr. Holtorf and Dr. De Meirleir all report that 80% or more of their patients see significant improvement over time, which is to be expected in a population of patients being aggressively treated. The fact that early diagnosis and treatment seem to correlate with recovery rate, at least in some cases, should be sufficient motivation for the newly ill to seek the proper specialist. However, even those who spend years searching for a diagnosis should not lose heart. Recognition and treatment any time during the illness can bring substantial improvement, if not full recovery.
Kenneth Casanova’s story of illness and recovery: http://www.masscfids.org/resource-library/7-coping/73-recovering-from-cfids
Bell DS, Jordan K, Robinson M. “Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome.” Pediatrics. 2001 May;107(5):994-8. http://pediatrics.aappublications.org/content/107/5/994
Masuda, Akinori, Takashi Nakayama, Takao Yamanaka, Yasuyuki Koga, and Chuwa Tei. “The Prognosis After Multidisciplinary Treatment for Patients With Postinfectious Chronic Fatigue Syndrome and Noninfectious Chronic Fatigue Syndrome.” Journal of Behavioral Medicine, Vol. 25, No. 5, October 2002. http://link.springer.com/article/10.1023%2FA%3A1020475108745
Matthews, Rosalind M., Anthony L. Komaroff. “Changes in Functional Status in Chronic Fatigue Syndrome Over a Decade: Do Age and Gender Matter?” Journal of Chronic Fatigue Syndrome, Volume 14, Issue 1, 2007. DOI:10.1300/J092v14n01_04 http://www.tandfonline.com/doi/abs/10.1300/J092v14n01_04