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"The most extreme consequence - trauma and premature death" (October 25)

Mary

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Southern California
"The most extreme consequence - trauma and premature death" (on ME/CFS) (October 25)

http://livetsbilder.blogspot.ie/2016/10/the-most-extreme-consequence-trauma-and.html

Wow ------ amazing blog -----

Someone did a post recently about how persons with ME/CFS are gaslighted by the medical profession - we are dismissed, our reality questioned, etc. by the very people who are supposed to be helping.

I've been wondering lately how much worse this awful illness is because of how we are treated, its invisibility, its almost complete lack of validation by the medical profession at large and family and friends. Not only is it one of the most debilitating illnesses on the planet, but patients are almost completely on their own in terms of both treatment and dealing emotionally with this illness. It would be hard to try to come up with a worse scenario. The blog discusses this all very eloquently, well worth a read.
 
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Countrygirl

Senior Member
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UK
http://livetsbilder.blogspot.co.uk/2016/10/the-most-extreme-consequence-trauma-and.html

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 Miamy 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.

I want you to have following definition and explanation of trauma and traumatic stress in mind while continuing reading:
"Trauma is an extremely stressful event/situation that can not be circumvented or managed by the individual's available resources."
"When confronted with a kind of stress that is so sudden, unexpected and catastrophic that it can not be handled with ordinary coping mechanism, you will be left with feelings of intense fear and powerlessness. You can do nothing about it and it is impossible to put it aside. This is called traumatic stress."

. Demoralizing treatment:
"38% have been met by derogatory comments in contact with healthcare. Some examples are "whining bitches", "you're fantasizing", "you sponge on our tax money ", "I do not want more ME patients", "I have heard there will open up a clinic for hypochondriac", "All people have a little fever every now and then", "Snatch up", "ME is curable if you are running in the woods 10 kilometres three times a week", "Want to be healthy and you will become it". More than half (52%) have been told that the symptoms are psychosomatic. As many as a quarter has been considered a hypochondriac."
I recognize it. The tone. The contempt. The attitude. From the doctor who wanted to send me off to a boot camp to trigger my body to start - to the doctor who said that everything is just about me getting over the threshold. Wrinkled her nose, as if I smell bad. Ignorance. The unwillingness to even talk about ME/CFS, and much less document the conversation. I have received this treatment in relation to both my fatigue and pain - but never so clearly as when I raised ME/CFS as a topic in the conversation.
 

anciendaze

Senior Member
Messages
1,841
The same observation of iatrogenic PTSD was voiced at a conference on Periodic Paralysis last year. All the patients in that organization have diagnoses based on objective signs and laboratory results, so it should be easy to rule out a "conversion disorder" (formerly called "hysterical conversion disorder" in the bad old days when only women were blamed). A substantial number of doctors haven't learned.