TW-Suicide/murder, not me, I'm fine.
I've debated about sharing this, but it has really upset me. I just heard a story about a family in Sweden that is dead because of the horrendous ignorance and mistreatment by medical professionals surrounding ME and CFS. Their one daughter was diagnosed and the other showed the same symptoms but was yet to be diagnosed. In Sweden, the primary medical "treatment" for ME and CFS are the biopsychosocial model of Cognitive Behavioral Therapy and Graded Exercise. The parents saw how the treatment was harming their daughter. They saw their other daughter with the same symptoms. They likely had already gone through the ringer with child protective services there because if you refuse CBT/GET for your child your child can be taken away from you and forced to do a treatment that makes them MUCH worse. These parents saw no hope, no help, no future for their daughters, and decided to kill their children and commit suicide.
Doctors and science FAILED this family. Doctors violated their oath to "First, do no harm..." This family is dead because of the biopsychosocial model of treating ME and CFS. It is quite literally torture to tell a person with a physical illness that it's all in their heads and they need to think positive, address abnormal thoughts about exercise, and exercise more. Many patients with ME and CFS end up with PTSD from being gaslighted and ignored by medical professionals.
This is what is happening with the condition I've been diagnosed with, CFS. We patients KNOW that our illness is physiological, NOT psychosomatic. Newer scientific studies are now proving this. We KNOW how devastingtingly bad CBT/GET are for us. They make us worse because our illnesses are PHYSICAL, NOT in our heads. We also know how damaging these "treatments" are because many of have tried them and ended up WORSE. I ended up practically bedbound for a time after trying GET under the supervision of a physical therapist after it was prescribed by a doctor. Telling a person with ME or CFS to exercise more is like telling a diabetic to eat more sugar. Yet medical professionals continue to gaslight us, ignore us, make fun of us, minimize and dismiss our symptoms, and prescribe dangerous "treatments" that not only don't help us but actively harm us.
I'm VERY glad to see and say that the CDC has FINALLY removed the recommendation for CBT/GET from their list of treatments for CFS on their website. The work is NOT over. Doctors need to be re-educated. Those in other countries are STILL being abused and harmed by these "treatments" which if you don't do them you may not be eligible for disability benefits. Children are being stolen from caring parents and institutionalized and forced to participate in treatments that not only don't help cure them but actively harm them. THIS MUST STOP! We need educated doctors who look for the root causes and go beyond testing only basic bloodwork. We need doctors who believe us. We need REAL treatments that don't harm us!!
