We're Sorry...apologies from the Centers for Disease Control
Last week, the Centers for Disease Control changed up its website, posting new recommendations for treatment and for training MDs. No question, it was a remarkable divergence from the CDC's original posturing in 1988 about their invention "chronic fatigue syndrome." But for those who have been ill with ME for decades, it may have failed to provide much fodder for celebration. Here's a fantasy version of what I would have liked to have seen instead.
Part Four: The Citadel
The fourth and final installment of my imaginary story about the Dubois Clinic in the 1980s. The financial incentive for seeing "CFS" patients is laid bare, as are a couple of breath-taking comments from clinic doctors. A tall tale best summed up as a tragicomedy. Praise be!
Part Three: The Citadel
Two more patients, a young woman from Nevada and a Harvard grad from New Mexico, make the pilgrimage to the venerable Dubois Clinic seeking medical help. Each patient ends their rounds of doctor visits feeling humiliated with absurd diagnoses, including "multiple hysterical personality disorder" in the case of a woman. It turns out that the influential clinic has been seeing large numbers of ME patients for several years--charging them hefty sums for numerous doctor interactions, yet failing to diagnose or help them, other than suggesting there is nothing wrong or recommending psychiatric consultations.
Part Two: The Citadel
A continuation of my original, unpublished chapter, "The Citadel," written for the first draft of Osler's Web." In this episode, a severly ill woman from Phoneix travels to Abbeville using her mother's modest inheritance, searching for answers. It's becoming apparent that the Citadel, the self-reputed central respository of U.S. medical excellence, has been seeing large numbers of ME patients for some time. Is their diagnosis ever correct?
Part One: The Citadel. An internationally renown multi-speciality clinic in California in 1988--or an unprosecuted racketeering enterprise in which the Hippocratic oath was the only promise violated?
Only the names and locations have been changed. In April of 1988, a world-renowned multi-specialty clinic in the U.S. was admitting one-hundred or more with ME sufferers every week. They came from all over the US and the world. I had scheduled interviews with its doctors but I was met at upon my arrival by a lawyer, who told me I would need to submit every word I wrote about the clinic to the clinic's large legal staff for possible censorhip prior to publication. I decided to stay and conduct the interviews I had scheduled, signing away my rights in the process. I postulated that I might gain insights that would inform my work in more general ways. My publisher never allowed me to include my chapter about this clinic, called "The Citadel," in my book. I am publishing it here, in five parts, twenty-nine years after it was written. At least one of the patients described in "The Citadel" has since died of ME. The events and the quotes (which I taped) are exact and verbatim. Why was the clinic so concerned about what I would find out about their treatment of people with ME and what I might write? I leave that to you to decide.
A Disease Able to Affect the Economies of Nations
Are scientists pursuing rational science in their latest forays into ME? Are the most important questions being asked? Or is time simply passing, another month, another year, while millions of people languish in bed? Here, a discussion of some of the research presented at the recent conference in Montreal followed by a one-time publication of my 2014 foreword for Judy Mikovits's book, Plague: One Scientists's Intrepid Search for the Truth About Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism and other Diseases. In it, I write about my Topic A--something I have wished for three decades was everybody's Topic A. Happy Memorial Day Weekend reading to my subscribers!
David Bell, Part Two: Low Blood Volume in Myalgic Encephalomeylitis--Shocking
Is the flashy technology of the day driving the direction of ME research or are the time-honored values of clinical observation and logic driving it? A look at low blood volume in ME, offered by former Lyndonville, NY pediatrician David Bell. The latter is concerned that some of the most basic organic findings in the disease, in this case low blood volume, are being left unexplored while advanced techniques of the day are focusing on microscopic abnormalities that may or may not lead to a central understanding of ME. A lot of ME sufferers have so little blood circulating in their vascular systems they are in a state of "persistent shock," Bell says. The lack of an adequate blood supply leads not only to orthostatic intolerance, a near-universal autonomic symptom in patients, but could explain many of the most life-threatening and debilitating aspects of the disease, including stroke, cardiac disorders, and even the mechanisms of death in ME. Bell and I discuss the manifestations and implications of low blood volume in ME and wonder--shouldn't investigators be trying to understand this shocking and possibly universal abnormality?
An introduction to Dr. David Bell
I've known David Bell since meeting him at a large patient and scientific conference for ME in Portland, Oregon in 1987. I was thirty-six and he was only a few years older. We were each, in our ways, entering the often bizarre and always troubling world of ME, neither of us appreciating then how it would consume the rest of our lives in a bonfire of politics and suffering, a conflagration interrupted and relieved by the excitement of new scientific discoveries, which were legion in those years. David recently agreed to a Q & A with me and requested our topic: low blood volume in ME, a critical area of study that has yet to be pursued with any vigor and one that David pioneered. Here, I relate my first impressions of David and his involvement with the Lyndonville outbreak of 1984-85, to be followed in the next installment by our conversation about low blood volume in ME.
Anatomy of a Missed Opportunity, Part Two
A 1996 interview in the New York Native with U.S. House democrat Jerrold Nadler...If this interview doesn't get your blood boiling, nothing will. It's a great accompaniment to my recent interview with long-time ME advocate Eileen Holderman, who talks about her approach to advocacy and what might best be done to fix the most serious problems faced by people with ME. She suggested the best approach would be to find a hero in Congress, admitting nevertheless that efforts to do so over the years had been unsuccessful despite intensive lobbying. Twenty-two years ago, however, Congressman Jerrold Nadler offered his help, suggesting to patients how to best approach Congress and how to move the struggle for recognition and worthy science forward. Nadler ultimately got his investigations, but his idea to write legislation to force CDC to investigate specific aspects of ME, such as whether it was transmissible, went nowhere.
Whither Advocacy? An Interview with Eileen Holderman, Part Two
Eileen Holderman talks about the problems with the IOM's definition and how it will harm patients; her years' long struggle with the CDC to remove its "Toolkit" promoting GET and CBT from its website; and the reasons for her low expectations for the NIH clinical study underway in Bethesda. Along the way, she addresses the reasons why adults with ME have so few advocates and whether "polite" is the most appropriate credo for advocates in the realm of this delegitimized disease the U.S. government holds in its iron grip.
Anatomy of a Missed Opportunity, Part One
A failure of ME advocacy has been its occasional inabililty to take advantage of major opportunities to publicize the disease and the government's negilgence surrounding the disease. Being able to identify these moments and make the most of them is critical. My conversation with Eileen Holderman reminded me of events that took place when my book Osler's Web was published and the highly organized attack against it levied by the patient organization of the era, the CFIDS Association of America or CAA, and--at the request of CAA leadership--the IACFS, then called the AACFS. This episode was investigated and described in some detail by the New York Native journalist Neenyah Ostrom. The hypocrisy of both the CAA and IACFS efforts is fairly evident in Ostrom's account. Herewith, the anatomy of a missed opportunity in 1996 to counter the government's line that ME was a psychiatric disease of hysterical women. It's a little-known chapter in ME history that demonstrates how organizations purporting to represent people with ME can harm them with carefully orchestrated campaigns that escape scrutiny. Fortunately, the Native was paying attention.
Whither Advocacy? An Interview with Eileen Holderman
Eileen Holderman is a hardworking, steel-spined advocate averse to making a splash. Most readers are likely unaware of her contributions, which she discusses publicly here for the first time. Ever polite and even generous in her confrontations with government health officials, she holds the course until she has accomplished her goals, even if it takes years. She thinks strategically and, as she says, "keeps things as close to the vest as possible." She wishes other advocates would, too. The government, she says, is watching and listening. In a wide ranging interview, she addresses the difficulties ME advocates continue to face and lays bare her long view of the government's historical and contemporary role in ME.
Is SEID Dead?
A recent CDC "phoner" hosted by CDC's Beth Unger included presentations by three members of the IOM committee who prepared the IOM report on ME/CFS. The committee chairwoman Ellen Clayton and doctors Lucinda Bateman and Peter Rowe were asked by an anonymous emailer if they would do anything differently today. All three said they would have dropped the suggestion to rename the disease SEID, (for Systemic Exertion Intolerance Disease). The controversy surrounding the name overshadowed important information for clinicians to enable them to diagnose the disease, the reports' strength.
The Fate and Fortunes of the Lazarus drug, Part Four
What is Ampligen? It turns out Ampligen may well be so much more than a therapy for the pandemic disease ME. Ampligen's manufacturer and patent holder, Hemipsherx Biopharma, is moving forward with plans to repurpose the drug in other diseases , including myriad cancers. Scientists who are experimenting with new uses for the drug discuss their work--and why they think Ampligen could be the next big thing. Bonus content: Tom Equels, Polymath? Last in a series of four articles on the Fate and Fortunes of the Lazarus Drug.
The Fate and Fortunes of the Lazarus Drug, Part Three
The third in a series of four articles focuses on the Fate and Fortunes of the Lazarus Drug. Ampligen's relatively new Chief Executive Officer, Tom Equels, is "repurposing" Ampligen in infectious diseases and cancer. Equels says his ultimate goal remains the approval of Ampligen for therapeutic intervention in ME. The Food and Drug Administration's years' long intransigence and it's history of bias against ME, is outlined, as is the early history of Ampligen as an experimental drug for AIDS.
The Fate and Fortunes of the Lazarus Drug, Part Two
After a near thirty-year effort by it's manufacturer, Hemispherx Biopharma, to achieve Food and Drug Administration approval for Ampligen's use as a first-line therapy for myalgic encephalomyelitis, the drug is all but unavailable in the U.S. to patients. A significant price hike and rigid enforcement of dosing protocols by the company has put the drug out of reach. Even at its height, FDA's stance on the drug made it accessible only to the very rich, or the very desperate. At no time in history has the drug been available to any more than .05 or .1 percent of the ME population. A requiem for Ampligen and its inventor, William Carter.
The Fate and Fortunes of the Lazaurus Drug, Part One
Ampligen is all but unavailable in the United States, but a small group of Canadian patients are seeking to push their government toward approving the drug for what could be an exploding Canadian patient population. An inside look at the first meeting between of Hemispherx executives and Canadian activists to discuss strategy.
Q&A with Jose Montoya of Stanford about Cytokines, T cells, Journal Reviewers and NIH
Dr. Jose Montoya talks about the new cytokine paper linking severity of symtoms with inflammation in ME; the likelihood of a diagnostic test resulting from the study; how reviewers changed the paper; the NIH funding problem; and unpublished work on T cells that may aid or result in identification of an ME pathogen,
New Kind of Analysis Yields Promise of Diagnostic Test
In advance of the high-powered ME jamboree underway at Stanford this weekend it seems right to take a close look at the paper, published on July 31, on cytokine expression in the disease.
Jose Montoya and the Stanford Experience (Final Part - Four)
It only took 30 years: from antagonism at major California medical centers in the mid-1980s to Stanford's warm embrace of M.E. by 2014. Missed opportunities, male chauvinism and scientific bias--with a happy outcome.
Jose Montoya and the Stanford Experience (Part Three)
Montoya discusses the complex issues of treatment in M.E., including confounding factors like duration of illness and degree of severity. And he volunteers a worthy proposal with the power to result in rapid progress and likely rapid resolution of this disease.
Jose Montoya and the Stanford Experience (Part Two)
“Eventually, it was just one ‘Wow’ after another,” Jose Montoya recalled in a lengthy interview. The “Wows” were uttered by colleagues as he presented them with mounting evidence of biological abnormalities in M.E. sufferers.
Stanford Then and Now: An Interview with Stanford's Jose Montoya (Part One)
One Stanford doctor, Jose Montoya, quietly rebelled in the early 2000s, eventually bringing M.E. sufferers into Stanford’s infectious disease clinic surreptitiously. Johnson unravels the remarkable story of how Montoya, over a period of years, altered the Stanford ecosystem in the realm of M.E.
Numerology (Part Three): What did they know and when did they know it?
The year 1989 was a remarkable one for the discovery process in M.E. Using imaging technologies that surpassed the MRI scan for sensitivity and specificity, California investigators found overwhelming evidence of brain damage.
Francis Collins: Should M.E. Sufferers Care Whether He Leads the NIH? (Part Two)
An assessment of Francis Collins' leadership in the struggle to recognize M.E. as a serious disease and fund it appropriately. In Johnson’s view Collins has failed on both counts.
NIH Director Francis Collins: A Trump Fave or A PlaceHolder? And Does it Matter? (Part One)
Is Francis Collins' fate important to M.E. sufferers? Consider the possibilities in this report on the politics of science and leadership at the nation's premiere research institution, and the often opaque Trump agenda.
Numerology (Part Two)
By the late 1980s, the pedantic Stephen Straus of NIH was working to shore up his psychoneurotic theory of the disease. Scientists outside NIH were raising alarms about its serious and apparently transmissible nature.
Numerology (Part One)
How many years have passed since the world-wide M.E. epidemic began--and when did it begin? In five parts, high water marks of the early days of pandemic spread.
Carol Head: Leader for a New Era (Part Two)
In her follow-up report on Carol Head, president of the largest and oldest patient organization in the U.S., Hillary Johnson reports on the reasons Solve ME/CFS returned to patient advocacy after years of exclusive attention to research.
Carol Head: Leader for a New Era (Part One)
Carol Head, president of Solve ME/CFS, is a relatively new voice in the M.E. cosmos of the last several decades, but hers is among the most urgent and creative voices to enter the fray on the advocacy side. What drives Carol Head?
Remembering Gilda Radner
“It was as if the subject of M.E. was somehow forbidden... Yet for Gilda and for me, it had been our private obsession, a topic we gave nearly equal time, cared deeply about…” Hillary Johnson remembers Gilda.
Postcards from the Edge (Of Florida)
A troubled field of inquiry, a wild and wooly mix of scientists, policy makers, "thought leaders," journalists and patient advocates made for the predictably fascinating mash-up described in this post about the 12th IACFS meeting (since 1996) in Ft. Lauderdale. The author contributes a photo gallery of some of the players in this tableau.
Can a Leopard Change its Spots?
Hillary Johnson talks to Edward Shorter, one of the most widely-published M.E.-deniers aside from the UK’s Simon Wessely.
From Idiocy to Alarm: The NIH hears from Naysayer Ed Shorter on the History of M.E.
On November 8, 2017, Canadian Edward Shorter, notorious M.E. hater and author of 1992 screed From Paralysis to Fatigued, addressed scientists involved in the first NIH clinical study of the disease in 29 years. NIH: tone deaf and apparently still clueless?