ME/CFS (myalgic encephalomyelitis (or encephalopathy)/Chronic Fatigue Syndrome is a very real complex disease that is related to a dysfunction within the brain that is comprised of  numerous symptoms that are unique to each individual. The illness is becoming more widely known although still remains stigmatized by the misconceptions and lack of understanding on the part of portions of the medical and legal communities as well society. To suffer with the illness is to have your life taken away from you not only your health, your financial well being, your social interactions, career, your hopes and dreams disappear with each symptom, each invalidation of what you are living with each moment of each day. You start to become as invisible as the illness appears.

i have ME/CFS and Fibromyalgia, along with the plethora of disorders that accompany the diseases. i am permanently totally disabled. It took over 2 and 1/2 years to get a hearing for SSD. i lost my job because i was sick, i became sick because of the excessive work and stress of my job and the hostile environment i worked in. i filed a Human Rights complaint and it was shut out without my knowing it was being investigated. The not-for-profit agency i worked for who ironically offers services to disabled, contradicted themselves and lied in parts of their testimony. The investigator told me at later date when looking into another employees allegation that i had a claim of discrimination before realizing that he was the one who dropped the ball in my case. Even though it was in the time frame couldn't reopen the case.

i then filed a Workers Compensation Case base on Causal relationship, not cause as there is not absolute cause only speculated cause for the diseases, with evidence that my job was distinct and oddly the agency had stated so in the Human Rights supposition. The WC process was a joke, the lower courts looked at the illness as mental health related not medical, the agency perjured themselves in their testimonies, didn't present documentation to back their statements, gave opposite testimony then they gave to Human Rights, and the WCLJ was not aware of the diseases nor was the IME yet they made a determination based on that criteria as well as case precedent that didn't exist. i am my own legal advocate as there are no attorneys who feel that cases where individuals are misrepresented, procedural error occurs or perjury is allowed are doable if the client is not financially well off. (i lost all of my savings, annuities and 401K's when i lost my health in order to live).

Why is there a WC system if there is narrow focus on illnesses? Why is it that the flavor of the month is with a new illness and disease such as ME/CFS yet it only focuses on a few aspects and individuals when there are so many who suffer? Why do those who are ill have to fight to heal? Live in my body, my mind, my life for one week and see how you would feel. i had a career, a life, a future that i gone. i was degraded at a job where i gave my all until my body couldn't take it anymore and i am still degraded by the same agency who fights to compensate me for an illness that was precipated and aggrevated by my work and the continued devaluation of my very being. i am treated similarly by the wc system, the legal community and to a degree some of the medical community who chose not to understand nor see what is a real disease. Dear God Help me before it is too late.