The ‘Mah Nishtanah’ of ME

/ Gabby Klein

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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.

14 thoughts on “The ‘Mah Nishtanah’ of ME”

  6. Great questions Gabby. I would add as the first question – ME had been described in the scientific literature since 1956. (I’d thought it was Acheson in 57, but Lisa’s great History of ME ( https://paradigmchange.me/me/history/ ) shows it was a Canadian woman Lindan R. Benign Myalgic Encephalomyelitis. Can Med Assoc J. 1956 Oct 1;75(7):596-7. PMID: 20325349) and has been codified in W.H.O.as a nerurological disease since 1969. Why did the US government not used the existing name, but instead develop their own, trivializing, name CFS?

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  8. A SECOND THOUGHT FROM PASSOVER:
    Dayenu — a song of gratitude from Passover.”Dayenu” means “It would have been enough”, as “it would have been enough if the Lord had led us out of Egypt,” but not (also) given us the Torah. Dayenu.
    In our PWME situation works in reverse. “Enough” in our situation involves a plenitude of harms, as Gaby laid out so well above, not a plenitude or blessings. Thus:.
    Dayenu — it would have been enough if the CDC and NIH had ignored the already proven immune symptoms of the disease in 1988, but at least acknowledged the neurological symptoms like seizures that were seen at Incline Village.
    Dayenu. It would have been enough if the agencies had hidden and misrepresented the symptoms but at least not named the Tahoe outbreak “Chronic Fatigue Symptom” although international experts had identified the cases as matched to Myalgic Encephalomyelitis, already listed under neurology at 93.3 since 1969 in the WHO ICD. Thanks to the name the patients are damned as malingerers and psychosomatics for all eternity.
    Dayenu. It would have been enough if they had named it CFS but not had NIH official Steven Straus prevent publication of so many papers in the 1990s, so that research could not be shared
    Dayenu Maybe it would have been enough if they had prevented sharing and publication of research but at least funded a litlle more.
    Dayenu. Maybe It would have been enough if they had starved research but not prevented knowledge of treatments like early acyclovir and legality for Ampligen.
    Dayenu It would have been enough if they had allowed us to wither and die for lack of treatments and care but at least not set up and sabotaged a well-publicized NIH intramural trial with with leaders committed to a psychological interpretation and therefore composing a suspect cohort of a barely-ill population susceptible to mischaracterization.(The trial is still short of participants.) And maybe enough if they had not installed a principle investigator who has many and more rewarding irons in the fire, and has been acknowledged by Dr. Collins to be investigating fatigue phenomena rather more than our disease.
    Dayenu.
    it would have been enough that the intramural research were to be off-base if we had not been disappointed in our hopes that having gained the attention of the devoutly Christian NIH Director surely would have brought to an end to Federal health agency policies that maximize disability and death among our populaton.
    Dayenu? The slate of hope has gone blank.
    Unknown factors seem to have made invisible in the Director’s treatment of us such fundamentals of Judeo-Christian belief systems as various among the Ten Commandments. Missing in action are the injunction against taking the name of the Lord in vain, that one shall not bear false witness, that one may not cause a murder, and that one may not steal or even covet thy neighbor’s goods,.
    More precisely, they seem to be not applied with regard to the continuing extensive mistreatment of M.E. patients.
    Of course evil can and often does prevail among those who see themselves as persons of faith. It is documented that CDC and NIH staff have long been extensively indoctrinated to hate M.E. patients and to deny them research and favorable policy prior to Dr. Collins joining the Obama administration in 2008. Such a pervasive and deep- seated institutional indoctrination has often displaced faith teachings in history. Millions of churchgoing Protestants, Roman Catholics, Uniate Catholics and Orthodox tossed biblical injunctions aside when indoctrinated to regard the disabled, Jews, gypsies and others as worthless vermin during the Nazi years. Some didn’t.

    “The only thing necessary for evil to flourish is for good men to do nothing.” attributed to Edmund Burke.

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    • Thank you, Deboruth for expanding on my Passover theme. Dayenu (it is enough) is a very appropriate directive to our government health agencies. We have had enough of all the neglect, abuse, and maltreatment. The time is long overdue for the government to come clean, apologize for their malfeasance and finally take appropriate care of this debilitating disease.

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