The Jewish Holiday of Passover celebrated this past month, as it is every spring, commemorates the liberation of the Israelites from slavery in Egypt. Its feature is the Seder when family and friends join together for an elaborate festive meal with specific customs and rituals. For many families, one of the highlights of the Seder night is the Mah Nishtanah, the “four questions” recited by the youngest members of the family. The questions are about the difference between this night as opposed to all other nights and its purpose is to stimulate interest and thought about the history and traditions involved with Passover.
Isidore Rabi, a winner of a Nobel Prize in physics, was once asked why he became a scientist. He replied, “My mother made me a scientist without even knowing it. Every other child would come home from school and be asked, ‘What did you learn today?’ But my mother used to ask a different question. ‘Izzy,’ she always used to say, ‘did you ask a good question today?’ That made the difference.”
In the tradition of the questions of ‘mah nishtanah’, I would like to stimulate thought about the history, actions, and state surrounding the acquired neuroimmune disease Myalgic Encephalomyelitis (ME) which manifests itself in epidemic and sporadic form and affects an estimated million American men, women, and children. There is no FDA approved treatment to date regardless of the fact that it leaves the majority of sufferers disabled from work, housebound or bedbound – some for decades.
From the beginning, when representatives of the CDC were called down to investigate the outbreak at Lake Tahoe in the 1980’s, CDC and other US health agencies have mistreated this disease which has resulted in incalculable harm to the million American men, women and children with ME. Every item questioned below are actions the government has taken or refused to make based on their attempt to disappear the reality and facts of the real acquired neuroimmune disease ME.
Following the form of ‘mah nishtanah’ questions as in “on all other nights we eat leavened or unleavened bread; tonight we eat only matzah”, here are the questions for ME.
Mah Nishtanah ME Questions
Why is it that:
- All other complex chronic diseases are named with people’s names, geographical locations or distinctive feature; this complex chronic disease is falsely branded “chronic fatigue syndrome” – after a common symptom of fatigue? (see how diseases are named here)
- All other complex chronic diseases are defined by non-government medical experts in that specific disease; this complex chronic disease is repeatedly ill-defined by the government (CDC)? (see Frank Twisk paper here)
- All other complex chronic diseases are taught in depth in medical and nursing schools; this complex chronic disease is either not taught at all, or mentioned dismissively?
- All other complex chronic diseases have a medical expertise assigned to them with ample nationwide practitioners caring and treating patients; this complex chronic disease does not have a distinct medical expertise assigned to it and has very few knowledgeable doctors caring and treating patients?
- All other complex chronic diseases are placed in a specific NIH Institute who claims responsibility for funding research for it; this complex chronic disease has not been placed in any particular NIH Institute? (it is currently situated in the Office of Research on Women’s Health which has no specific budget set aside for research)
- All other complex chronic diseases receive NIH funding commensurate with the disease severity and burden; this complex chronic disease gets a pitiful fraction of appropriate funding? (see table here)
- All other complex chronic diseases that render patients unable to of a fair chance to secure Social Security Disability payments; this complex chronic disease has a high rate of denial for SSD, regardless of the severity of symptoms and the disabling nature of them?
- All other complex chronic diseases that appear in epidemic form are studied for their infectious nature; this complex chronic disease which has appeared in over 50 outbreaks worldwide since the 1930’s (see list here) yet its infectious nature is mostly ignored and covered up by CDC?
- All other complex chronic diseases have appropriate recommendations for FDA approved treatments; this complex chronic disease has no FDA approved treatments and has recommendations for treatments that are harmful to people with ME (graded exercise therapy [GET] and cognitive behavioral therapy [CBT])? (see a warning about GET from Workwell Foundation here)
- All other complex chronic diseases that are biological in nature are described, defined and studied as a biomedical disease; this complex chronic disease is falsely labeled, defined and studied as a psychosomatic condition?
Once is happenstance. Twice is coincidence. Three times, it’s enemy action. – Ian Fleming
All these discrepancies and discriminatory actions by HHS are not coincidental. They all serve the purpose to minimize, marginalize this disease and deflect responsibility from the health agencies whose charge it is to “for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.”
The month of May is awareness month for ME. It is time to ask the hard questions such as:
- Why have the government health agencies ignored, neglected and covered up this severely disabling acquired multisystem disease for decades?
- Why did the government health agencies enable the psych lobby to highjack this disease when they have known for decades that this is a biomedical disease?
- Why are they so reluctant to properly name and define this disease as recommended by the medical experts and community?
- How much money has the government withheld with their refusal to properly fund this disease and by their continuous denial of disability coverage?
This May patients and advocates need to ask deep-seated questions and demand answers. With the insistence and demand that the proper name (myalgic encephalomyelitis) with the appropriate definition (ICC) be used, it will force the government to finally distinguish ME from fatiguing and psychosomatic conditions. It is with this most important distinction that meaningful change will take effect.