Livets bilder (Life images) blog post, 25 October 2016: The most extreme consequence – trauma and premature death  (Originally written in Swedish)

In this post I will write about something that I see as the most extreme consequence of what I call secondary system related stress. Something that is not “just” about worsening an existing condition, but when the system-related stress, adding to a person such damage that it could be counted as an additional condition. A new diagnosis. And a risk of a premature death.

When I wrote an earlier post about how my own emotional reactions have changed over time due to the cumulated stress, I remembered that I somewhere read about ME/CFS and PTSD (Post Traumatic Stress Disorder) triggered by healthcare.

I found an interesting article describing how Dr. Nancy Klimas found her way into further research about ME/CFS. In the 1990s, she studied how people with chronic diseases were affected by a natural disaster. One of the patient groups were people with ME/CFS. The study showed that people with chronic disease developed PTSD in a higher level than those without any chronic disease. People with ME/CFS also showed an exacerbation in their chronic condition. But she discovered something else as well: Even those ME/CFS sufferers who were not at all affected by the trauma during the natural disaster had higher rates of PTSD. This was something that differed from the other groups of chronically ill. After further investigation, she found an explanation in the patients’ healthcare situation:

“Yet compared with people with other chronic diseases, CFS patients, even those who hadn’t lived through the trauma of a hurricane, had notably higher PTSD rates, she found. Digging deeper, she found that CFS patients had actually been distressed by their medical experiences. A common theme in the trauma was an exposure to a health-care situation that was demoralizing and demeaning, she says.”

Dr. Nancy Klimas also said in an interview in the Miami Herald 2009:

“I’ve had patients who met posttraumatic stress disorder criteria, where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.”

So, it is a long known fact that people with ME/CFS are at risk of developing PTSD related to community support systems. I have not found any specific studies on ME/CFS and healthcare triggered PTSD. However, right now there is an important survey study in progress, designed to investigate secondary mental illness in people with ME/CFS linked to external factors, such as how healthcare personnel treat their patients. It is web based and open to everyone with ME/CFS to join.

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