Mr. Kennedy, One Infectious—and Chronic—Disease Does Not Need an Eight-year Research Vacation
In fact, ME/CFS research has already had a 30-year vacation from any significant research effort
On September 18, the New York Times’s Emily Baumgaertner took on Robert F. Kennedy Jr.’s plan to reform the U.S. public health bureaucracy, should he be given that opportunity.
“Unfortunately, the regulatory agencies pay too much attention to the mercantile interests of pharmaceutical companies and too little to actual public health,” Kennedy told Baumgaertner. Continuing, he addressed one of his major public health concerns: “...doing what needs to be done to end the chronic disease epidemic.” (1)
Baumgaertner concludes her critique of his ideas with a statement Kennedy has made previously when discussing chronic illness: “ ‘I’m going to say to N.I.H. scientists, God bless you all,’ Mr. Kennedy said last November. ‘Thank you for public service. We’re going to give infectious disease a break for about eight years.’ ” (1)
Leaving aside the numerous reasons to continue research into infectious diseases, there’s a large patient group that hasn’t even been given the opportunity to be ripped off by pharmaceutical companies: ME/CFS patients.
ME/CFS is also an illness that defies Mr. Kennedy’s differentiation between infectious and chronic diseases—it is both.
It’s not the only transmissible illness that can become chronic, but it is the only infectious illness that has been treated so dismissively for 30 years that it now affects “up to 3.3 million Americans” and “costs the U.S. economy about $18 to $51 billion annually in medical costs and lost income,” according to the Centers for Disease Control and Prevention (CDC). As has become oddly common in descriptions of diseases, CDC hedges its bets by noting that “More than 9 in 10 people with ME/CFS have not been diagnosed by a doctor.” (2)
By the CDC’s own calculation, then, more than 30 million people in the United States could have undiagnosed ME/CFS—approximately 10% of the current U.S. population.
It’s an ironic commentary from CDC, the governmental agency that, according to Osler’s Web author Hillary Johnson, has actively prevented substantial research on ME/CFS for three decades. “There has been absolutely no effort by CDC to prevent the spread of ME, though it has had at least three decades to try,” Johnson writes in her recent book, The Why. “Instead, CDC promotes absurd, irrational theories that seek to deny that ME is contagious.” (3)
And while ME/CFS patients and their advocates blamed various researchers and government administrators for their out-and-out betrayal during the first decade or so of ME/CFS, Johnson points out, “The problem no longer can be blamed on individuals behaving badly. The agency’s pretense that ME is some vague emotional malady that can be sorted out by psychiatrists has settled into the institutional DNA in Atlanta; it’s generational, it’s structural. And it continues to be exceedingly convenient.” (3)
Let’s examine some evidence that ME/CFS is an infectious, as well as chronic, illness.
The presence of ME/CFS in the U.S. was detected when an outbreak occurred in Lake Tahoe, Nevada, in Autumn 1984-Spring 1985. While CDC sent an investigator, Dr. Gary P. Holmes, to Incline Village, he quickly concluded that there was no outbreak. Nothing to see here in the small resort town where two physicians, Drs. Paul Cheney and Daniel Peterson, detected a new, seemingly incurable syndrome among their usually stable patient population. (4)
While detailing the events describing the CDC’s attempts to “disappear” this original outbreak of ME/CFS could take a book—actually, its history has been recounted in many books—there are seminal moments that define how the whole mess was created by CDC, and how it has continued for 30 years.
When Holmes was ready in February 1987—two years after his visit to Incline Village—to publish his paper about the original outbreak, he sent an advance copy to Cheney, inviting him to be a coauthor. What Cheney read so horrified and enraged him that not only did he refuse to have his name associated with the paper, but he also wrote a letter of protest to the editor of the journal where it was to be published. (4)
“I cannot help but conclude that Dr. Holmes et al. have altered their own data to suit their particular purposes...their article has, in its current form, no business being printed in a major medical journal,” Cheney wrote. (4)
As one might imagine, Cheney’s protest had no effect and Holmes et al.’s damaging paper was published in the prestigious Journal of the American Medical Association (JAMA). (5)
After Holmes’s publication in July 1987, he made quick work of any reporters trying to determine how serious the new illness was. Holmes told the New York Times, “A lot more is being made of this by the lay press than it probably deserves.” And to the health magazine Hippocrates, he stated—in an obvious rebuke to Cheney—“Physicians get caught up. They think they notice something, then they start seeing it everywhere.” (4)
Meanwhile, Cheney and Peterson began to observe another very concerning trend among their ME/CFS patients: many were developing B-cell lymphoma, a type of blood cell cancer. Since Holmes was still CDC’s point man, they advised him of this development in May 1988. (6)
And so the dice were irrevocably cast: Holmes, in a condescending letter, replied that if ME/CFS patients developed cancer, they were no longer ME/CFS patients; instead, he proclaimed, they became cancer patients. (6)
In that one response by one government health official, ME/CFS was forever characterized as a disease whose sufferers would never get sicker—and would never die from their illness, a criterium that’s critical to a disease receiving consequential attention from government health agencies.
And yet, outbreaks—defined as non-events by CDC—continued to occur: in an orchestra in the Durham, North Carolina, area; among a girls’ basketball team and in a group of teachers at Truckee High School (Truckee, Nevada), and among 60 children in Lindenville, New York, to name a few. And some ME/CFS patients died from their illness, sometimes from the cancer or heart disease they developed as a result of having ME/CFS for many years—or, far too often, from suicide. (4)
In 1990, a new variable was introduced to the ME/CFS equation. Dr. Nancy Klimas and her colleagues at the University of Miami published a paper in the Journal of Clinical Microbiology concluding that numerous studies “suggest that CFS is a form of acquired immunodeficiency.” (4)
Besides freaking out every virologist, immunologist and bureaucrat in every government research agency—because what other illness is described as an “acquired immunodeficiency”?—Klimas and colleagues’ study begged the question: What is being acquired?
Doesn’t the fact that an immunodeficiency is “acquired” imply that an infectious agent is being transmitted between individuals? The very same health professionals who ignored communicability in ME/CFS had no trouble admitting contagion in the dawn of the “acquired immunodeficiency syndrome,” i.e., AIDS.
While the National Institutes of Health (NIH) and CDC have backed away from their obsession with categorizing ME/CFS as a psychiatric illness, they continue to ignore and try to debunk any data suggesting that it spreads among workers in an office space, within families, among schoolchildren. (4)
One reason they’ve been able to get away with it is that no causative agent has been identified as the cause of ME/CFS. A few courageous researchers over the years have attempted to answer the question of what pathogen causes the illness, but they find they’re soon short of funding to continue and their data are swept under the nearest rug.
However, if you check out a few of the many papers published in attempts to identify a causative agent—noted in references 27 through 60 below, by no means a complete compendium—you will see that a lot of data continue to accumulate under that rug.
You will also notice that many of the physicians and researchers who started working on ME/CFS in the 1980s are still publishing papers in the 21st century. Much of this research is funded by wealthy individuals or by patient advocacy groups, to the shame of U.S. health research agencies.
I find nothing to criticize in Mr. Kennedy’s imperative to “Make America Healthy Again.” However, the debate about how to accomplish that mission, in my opinion, needs to be conducted with more nuance and discernment than the solution he proposes.
BIBLIOGRAPHY
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2. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” CDC.gov. https://www.cdc.gov/me-cfs/about/index.html
3. Hillary Johnson. The Why. The Historic ME/CFS Call to Arms. 2021. Bassett Creek Publishing. Based on a speech given to “Invest in ME” in London, May 2009. Copyright ã2009, 2021 by Hillary Johnson. All rights reserved.
4. Neenyah Ostrom. What Really Killed Gilda Radner? Frontline Reports on the Chronic Fatigue Syndrome Epidemic. 1990. That New Magazine, Inc.
5. Gary P. Holmes et al.; “A Cluster of Patients with a Chronic Mononucleosis-like Syndrome: Is Epstein-Barr Virus the Cause?”; Journal of the American Medical Association, 1987, 254:2297.
6. Personal communication with Dr. Paul Cheney, March 1988.
7. Neenyah Ostrom. Ampligen: The Battle for a Promising ME/CFS Drug. 2022.
Reports of ME/CFS Clusters
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Reports of Infectious Agents as Potential Causes of ME/CFS
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31. CDC AIDS Weekly; “Biotech Research Laboratories: HHV-6 Diagnostic Test Contracts Awarded”; September 5, 1988; p.3.
32. CDC AIDS Weekly, “Gallo Lab Plans Studies to Determine HHV-6 Cofactor role in AIDS”; September 12, 1988.
33. CDC AIDS Weekly “US NCI: New HHV-6 Data Reported”; November 7, 1988; p.2.
34. J.K. Chia and A.Y. Chia. “Chronic Fatigue Syndrome is Associated with Chronic Enterovirus Infection of the Stomach”; J. Clin. Pathol. 2008; 61: 43-48.
35. Elaine DeFreitas et al.; “Retroviral Sequences Related to Human T-Lymphotropic Virus Type II in Patients with Chronic Fatigue Immune Dysfunction Syndrome”; Proceedings of the National Academy of Sciences USA 88:2922, 1991.
36. B. Evengård et al. “Increased Number of Candida albicans in the Faecal Microflora of Chronic Fatigue Syndrome Patients During the Acute Phase of Illness”; Scand. J. Gastroenterol. 2007; 42: 1514-1515.
37. Rosemary Goudreau; “Highly Contagious Herpes Virus Linked to Cancer, AIDS”; Miami Herald, May 11, 1988, page 1.
38. G.R.F. Krueger, B. Koch and D.V. Ablashi; “Persistent Fatigue and Depression in Patient with Antibody to Human B-Lymphotropic Virus”; The Lancet, July 4, 1987; p.694.
39. G.R.F. Krueger and D.V. Ablashi; “Human B-Lymphotropic Virus in Germany”; The Lancet, July 4, 1987; p.694.
40. Ronald Herberman; “Abnormalities in the Immune Systems in Patients With Chronic Fatigue Syndrome”; presented at the First International Conference on Chronic Fatigue Syndrome and Fibromyalgia, Los Angeles, February 16-18, 1990.
41. W.L. Irving et al.; “Antibody to Both Human Herpes Virus-6 and Cytomegalovirus”; The Lancet, September 10, 1988; p.630.
42. J.F. Jones et al. “Evidence for Active Epstein-Barr Virus Infection in Patients with Persistent, Unexplained Illnesses: Elevated Anti-early Antigen Antibodies”; Ann. Intern. Med. 1985; 102: 1-7.
43. James F. Jones et al.; “T-cell Lymphomas Containing Epstein-Barr Viral DNA in Patients with Chronic Epstein-Barr Virus Infections”; New England Journal of Medicine 318:733, 1988.
44. J.R. Kerr et al. “Antibody to Parvovirus B19 Nonstructural Protein is Associated with Chronic Arthralgia in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”; J. Gen. Virol. 2010; 91: 893-897.
45. K.K. Knox and Carrigan, D.R. "Active HHV-6 Infection in the Lymph Nodes of HIV Infected Patients: In vitro Evidence That HHV-6 Can Break HIV Latency"; Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology, April 1, 1996.
46. Herbert Kirchesch et al.; “Seroconversion Against Human Herpes Virus-6 (and Other Herpes Viruses) and Clinical Illness”; The Lancet, July 3, 1988; p.273.
47. Anthony L. Komaroff and R.C. Gallo et al.; “A Chronic ‘Post-Viral Fatigue Syndrome’ with Neurologic Features: Serologic Association with Human Herpesvirus-6 (HHV-6)”; abstract submitted to the Society of General Internal Medicine, Washington, DC, April 24-29, 1988.
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50. J.-S. Lee et al.; “Salivary DNA Loads for Human Herpesviruses 6 and 7 Are Correlated with Disease Phenotype in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”; Front. Med., 06 August 2021. https://doi.org/10.3389/fmed.2021.656692
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About the Author
Neenyah Ostrom was the first reporter in the United States to report weekly for a decade on ME/CFS. Her reporting on the Chronic Fatigue Syndrome epidemic from 1988-1997 is getting increased attention thanks to Robert F. Kennedy Jr. He discusses her work extensively in his 2022 best seller, The Real Anthony Fauci. Ostrom’s groundbreaking reporting on Chronic Fatigue Syndrome and AIDS appeared in the New York Native from 1988 to 1997.
Ostrom wrote the Foreword to the recently published THE REAL AIDS EPIDEMIC: How the Tragic HIV Mistake Threatens Us All by Rebecca Culshaw, Ph.D.
Ostrom is the author of four books about the Chronic Fatigue Syndrome epidemic: What Really Killed Gilda Radner? Frontline Reports On The Chronic Fatigue Syndrome Epidemic (1991; TNM Inc., New York, NY), 50 Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS (1992; TNM Inc. and St. Martin’s Press, New York, NY; published in Japanese by Shindan-to-Chiryo, 1993; and in French by Les Editions Logiques, 1994), and America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS (1993; TNM Inc., New York, NY); and America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS, Updated 2nd Edition (2022, available as a Kindle ebook and paperback on Amazon.com). Her most recent book, Ampligen: The Battle for a Promising ME/CFS Drug (2022) is available as a Kindle ebook and paperback on Amazon.com
In 1995, Ostrom and New York Native were recognized as having reported one of the top 25 most-censored stories in the U.S. press by 1995’s Censored: The News That Didn’t Make The News And Why (The 1995 Project Censored Yearbook by Sonoma State University Professor Carl Jensen, introduction by Michael Crichton; published by Four Walls Eight Windows, New York, NY, 1995).
Ostrom is ghostwriter/editor of seven popular science books. Additionally, she was an editor of Total Breast Health: The Power Food Solution For Health And Wellness by Robin Keuneke, which was chosen as a Publishers Weekly “Best Book of 1998” in the category of Breast Health (Kensington Publishing Corp., April 1998).
In 2005, Dr. John Ioannidis published his review article, Why Most Published Research Findings Are False. In response, the NIH wrote and distributed a lengthy report suggesting (voluntary) actions that researchers could take to reduce false research findings.
Though never acknowledged to the general public, by 2005, researchers already understood that their own published research was mostly BS. In my own labs, I personally witnessed the publication of false findings probably a dozen times, including projects I was involved in. But we all looked the other way, because that's how the NIH funding and publication game was played, and research was our livelihood.
However, few of us were aware that the FDA, CDC, and NIH were bought and paid for tools of Big Pharma. Nor were we aware of the involvement of the US DOD and Intel agencies in the perversion of the entire drug safety regimen. 2020 changed all that.
I would argue that the NIH has zero benefit to the public. I would argue that the primary role of NIH funded research is the creation of hypothetical biological models that are subsequently used as a fictional rationale for development of new Big Pharma drugs. Drugs that cause harm and have zero benefit. Drugs which can treat nothing and can cure nothing, because the hypothetical models upon which they are based, are themselves false.
This column needed to be written. RFKJr's failure to recognize that ME is an infectious disease is a gross misunderstanding of this extremely common, even rampant, malady. ME is chronic, but only because there is no cure and federal health agencies have supported no efforts to find a cure. Plus, there have been no attempts by the federal health agencies to control the spread of ME or even identify risk factors. Today, forty years after a pandemic surge of ME, 1.3 of every 100 Americans has been disabled by ME. To characterize ME as "chronic" is to miss the critical piece--ME is a communicable disease. PS, I love Neenyah's extensive bibliography for this piece.