Numerology, Part Three: What did they know and when did they know it?

A year of breakthrough discoveries in brain abnormalities in M.E

The year 1989--twenty-eight-years ago--was a remarkable one for the discovery process in myalgic encephalomyelitis.  Academic interest in the disease had not yet been muted by NIH investigator Stephen Straus' poorly-conceived and executed research suggesting mental illness predisposed people to M.E., though Straus' paper was published in a psychiatric journal that year. 

On another coast and seemingly a world away, California reearchers were studying the impact of the disease on the brain. Using imaging technologies that surpassed the MRI scan for sensitivity and specificity, their findings pointed overwhelmingly to outstanding patterns of brain damage.  They observed low blood flow, reduced metabolic activity and reduced oxygen to the brain in a majority of patients tested.  The first report on low blood-flow to the brain was presented at a scientific conference Cambridge, England in 1990.  

Evidence to explain in some part what is today called "post exertional malaise" was discovered in 1989, too.  The Institute of Medicine's 2015 report on M.E. suggested the disease be named for this symptom alone. 

By 1989, M.E.'s stark impact on brain integrity was increasingly apparent.  As a neurologist colleague of clinician Paul Cheney told him at the time, "All bad diseases get to the brain eventually."


Francis Collins: Should M.E. Sufferers Care Whether He Leads the NIH? Part Two

Part One of this two-part series on NIH Director Francis Collins examined his current tenuous status with the Trump Administration, his appeal to the far-right wing of the Republican party, as well as his "Christian apologetic" ethos on God, creationism and evolution. Part Two assesses Collins' leadership in the struggle to recognize M.E. as a serious disease and fund it appropriately.  In this author's view, Collins has failed on both counts, although the leadership at Solve ME/CFS Initiative takes a kinder, certainly more politic, view.  Also addressed: the need for a formal apology from the U.S. government to M.E. patients and Trump's interest in vaccine safety.  Will commitment to studying relationships between vaccines and autism be Trump's litmus test for winning the top jobs at both CDC and NIH? 

NIH Director Francis Collins: a Trump Fave or A PlaceHolder? And Does it Matter? Part One

Francis Collins has been director of the National Institutes of Health since 2009.  At the eleventh hour, the Trump transition team asked Collins to stay on for the time being at NIH rather than accept his resignation--as is typical when a new president assumes power.  Has Collins' born-again bona fides made him especially attractive to the right wing of the Republican Party and will he serve another four years--or is he a placeholder who will step down eventually, given that several other candidates appear to be under consideration?  And does Collins' fate matter to M.E. sufferers?  Consider the possibilities in this two-part report on the politics of science and leadership at the nation's premiere research institution, and the often opaque Trump agenda.

Numerology, Part Two

Numerology, Part Two continues to list some of the most dramatic turning points during the early years of the M.E. epidemic, a period when the medical establishment began to split into camps.  One faction was following the pedantic Stephen Straus of NIH, who was working to shore up his psychoneurotic theory of the disease in the medical literature.  Scientists outside the manicured NIH campus were struggling to demonstrate just how serious M.E. could be and raising alarms about its transmissible nature.  The fight, a.k.a., "medicine's holy war," was shaping up to be far from fair.

Numerology, Part One

How many years have passed and how many people have fallen ill since the world-wide M.E. epidemic began--and when did it begin?  If one searches for all the documented cluster outbreaks that were confined to institutions or even small towns, one can find accounts of the disease going back to the 1930s, possibly earlier.  But history suggests something occurred in the 1970s and early 1980s to change the dynamic.  M.E. began to rage through the population at large, unconstrained by walls and geography.  Eye View Exclusive presents a five-part series called "Numerology." The series notes the high-water marks of the early days of this pandemic spread.  It also measures in specifics the years lost to millions who contracted the disease while individuals struggled to press an intractable government into action.  Herewith, Part One...

Carol Head: Leader for a New Era, Part Two

Carol Head: Leader for a New Era, Part Two

"A Devastating tragedy unworthy of the American people."  Vanderbilt University ethicist, doctor and chairwoman of the Institute of Medicine's committee on M.E., Ellen Wright Clayton, did not mince words about the epidemic and the failed response of the American medical establishment to the disease and its victims.  Part Two of Hillary Johnson's series on Carol Head, president of the largest and oldest patient organization in the U.S., describes Head's return to patient advocacy after years of exclusive devotion to research.  The 2015 Intsitute of Medicine and the late-2014 "Pathways 2 Prevention" reports on M.E., both sponsored by the Department of Health and Human Services, jolted everyone with strong language seeking increased research funding, medical education and more humane treatment of sufferers.  Head decided the time was ripe.  She accompanied the actress Morgan Fairchild, a former PWME and activist, and I.O.M. report author Ellen Clayton to a meeting with Anthony Fauci, long-time head of the National Institute of Allergy and Infectious Disease, seeking a permanent home for the disease at NIAID.  Read Part Two for the full story. 

Carol Head: Leader for a New Era (Part One)

The first in a two-part series on Carol Head, the savvy new president of the nation's oldest patient organization.  Head has dragged the former CFIDS Ass. of America into the 21st Century, renaming the organization (Solve ME/CFS Initiative), moving its operations to Los Angeles from Charlotte, NC where it began in 1987, and re-staffing, including bringing on board a new director of science and research, Dr. Zaher Nahle.  She has fresh ideas and a new attitude, most of them diametrically opposed to the former leadership of the organization.  At the final gathering of the notorious CFSAC meeting in Washington, D.C. before Donald Trump took office, she challenged her colleagues on the committee. Just 7 percent of their recommendations to the Assistant Secretary of Health had been implemented, establishing a 93 percent failure rate.  If any other government committee had a similar failure rate, she noted, it would be abolished.  And then she offered her plan for change.  Read on to discover what drives Carol Head...

Remembering Gilda Radner by Hillary Johnson, copyright 2016, All Rights Reserved

Among many things that have haunted me about my interactions with Gilda over the years is that such a significant portion of our interview sessions were devoted to a medical topic far afield from ovarian cancer.  Yet that topic never found much of a home in either my Rolling Stone obituary of Gilda or her own book.  It was as if the subject of M.E. was somehow forbidden, as if it was impolite to impose such a dark and questionable-seeming subject on innocent readers who had the fortitude to read about cancer but couldn't quite handle the looming threat of M.E.  Yet for Gilda and for me, it had been our private obsession, a topic we gave nearly equal time, cared deeply about; it had launched the episode in her life that would turn out to be her final undoing.

An excerpt from Hillary Johnson's story about Gilda Radner, with whom Johnson spent perhaps 50 hours over numerous leisurely lunches one summer in 1987 at a health food restaurant in the Disneyland-tidy Westwood neighborhood near UCLA in Los Angeles.  Johnson's task was to conduct interviews from which she could extract material to use in her book, "It's Always Something," a memoir that was published shortly after she died in March 1989.  Upon her death, Johnson's editors at Rolling Stone asked her to write an obituary of Gilda, which she includes here.  Perhaps not entirely surprisingly, the abiding topic of their meetings turned out to be their shared experience of M.E.