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SURVEY: What Triggered Your Illness?

The phrase “no known cause or cure” is a familiar one to sufferers of ME/CFS and fibromyalgia. Neither one of these illnesses has a definitive cause and neither has an accepted biomarker.

While the cause remains elusive, triggers for these illnesses are well known. Patients have reported falling ill after exposure to pesticides, mercury, and other toxins. Injuries, such as car accidents and surgery are often associated with the onset of fibromyalgia. For patients with ME/CFS, many report becoming ill after what appears to be a flu, or other viral infection. And there are numerous others who become ill after bacterial and parasite infections.

The distinction between triggers and causes is important, even if it may seem a fine point. For example, many young people develop ME/CFS after a bout of mono. Epstein-Barr virus was certainly the trigger in these cases, but the chronicity of symptoms may be due to a different virus entirely, or to an autoimmune process. The same holds true for FM. A car accident or surgery may precipitate the illness, but the cause could be, as in the case of ME, neuro-inflammation to due to an infection, repeated physical injury, or various neurochemical imbalances.

Although causes and biomarkers are still being sought, it is important to take triggers into account. Treatment depends, in part, upon the trigger. While the symptoms may be identical, the mode of treatment will be very different for those with chemical exposure than those who became ill after a flu or infection. Ultimately, it may even prove that regardless of the similarity of symptoms, all of these subsets may be classed as different diseases.

Editors Karen Lee Richards and Erica Verrillo are conducting a survey to explore triggers in ME/CFS and fibromyalgia. We would also like to understand what patients themselves think is the underlying cause of their illness. While researchers hunt for causes in the lab, it is worth asking patients what they believe. Patient experience is the bedrock of clinical discovery.

Take the survey HERE [1].