Why has ME/CFS Research Stalled for Four Decades?

The troubled history of scientific ineptitude and patient suffering— AMERICA’S BIGGEST COVER-UP: Chapters 13 through 16

          In 1988, I began covering the Chronic Fatigue Syndrome Epidemic—now referred to as ME/CFS in government documents and elsewhere—weekly at the New York Native newspaper. In 1992, I drew upon those weekly columns to write a book—America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syn­drome Epidemic And Its Link To AIDS. It was published by TNM, Inc., the owner of the New York Native, as well as St. Martin’s Press in New York; in Japanese by Shindan-to-Chiryo, and in French by Les Editions Logique.
          Fast forward to 2021, when I learned that the British medical journal Healthcare had published a special edition devoted to severe and very severe ME/CFS. I was stunned by how little progress had been made in the preceding 29 years.
          The 2022 Kindle edition of America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syn­drome Epidemic And Its Link To AIDS, Updated 2^nd Edition contained not only the text of the original manuscript but also a new introduction. Each week (or so), I will publish a new chapter or section for the paid subscribers to The Real AIDS Epidemic.
          This week, I’m distributing four rather than two chapters to free as well as paid subscribers. They demonstrate the vast difference in ME/CFS symptoms, from mineral depletion like zinc and magnesium to cytokine dysfunction in immune system chemicals like tumor necrosis factor, involved in cancer and other serious diseases, and cortisol, the stress hormone.

          This is the eighth of these published sections.

Chapter Thirteen
CFS, Like AIDS, May Be Primarily a
Tumor Necrosis Factor Disease

Tumor Necrosis Factor, TNF, was one of the first lymphokines discovered. Lymphokines—also called cytokines—are chemicals produced by immune system cells; they help different kinds of cells to communicate with each other in mounting immune responses.

TNF is produced by the immune system cells called macrophages and was named “Tumor Necrosis Factor” because it was observed to kill cancer cells. TNF is also primarily responsible for causing the extreme weight loss observed in people with cancer and AIDS.

TNF has been found by some researchers to be increased in CFS patients. Other lymphokines—gamma-interferon, interleukin-2, and interleukin-6, for example—have also found to be increased in CFS. But some researchers have found these same lymphokines to be decreased in CFS, pointing out once again that a malfunctioning of the immune system can result in contradictory information being gathered by researchers.

Whether these cytokines are increased or decreased in CFS, it is clear that their normal production is disturbed. Also, because different lymphokines and various types of immune system cells interact with each other in not-yet-understood ways, it’s not clear exactly why CFS patients have abnormal amounts of TNF and other cytokines.

TNF has also been observed to cause HIV to reproduce at higher levels than it normally does. For that reason, Dr. Jay A. Levy, a prominent AIDS researcher in California, has suggested that AIDS is primarily a TNF disease. Dr. Levy has also suggested that, if TNF levels were decreased, a lot of the symptoms and illnesses seen in AIDS patients would disappear.

Interestingly, Ampligen—an experimental drug that has shown promise in treating both AIDS and CFS—has been shown to lower TNF levels as well as improve symptoms.

Chapter Fourteen
Zinc Deficiency Can Contribute to CFS

Zinc is a trace mineral that is very important in maintaining a healthy immune system. But as many as 85 percent of CFS patients may have a serious zinc deficiency, which is extremely common among AIDS patients as well.

Zinc is perhaps the most important “growth factor” in the human body; any cells that are rapidly reproducing—such as those involved in healing wounds, immune system cells that are actively fighting infections, and cells in growing fetuses—require a steady supply. Zinc deficiency in a pregnant woman can cause very serious birth defects in her child. The most dramatic birth defect caused by zinc deficiency is anencephaly, in which a child is born with only part of a brain, or literally with no brain at all.

Zinc deficiency can also cause stunted growth in children, skin lesions, hair loss, and increased susceptibility to infections because of impaired immunity.

A physical sign of zinc deficiency—which is, according to some researchers, found in a majority of CFS patients—is white spots on the fingernails, a condition called “leukonychia.”

Zinc deficiency may be responsible for another symptom of CFS: alcohol intolerance, experienced by many CFS patients. Zinc is responsible for helping to form the enzyme that breaks down alcohol, called alcohol dehydrogenase. Too little zinc may lead to insufficient production of alcohol dehydrogenase and, therefore, to alcohol intolerance.

Zinc deficiency, then, may not only contribute to lowered immunity and birth defects among CFS patients and their children, but also to the alcohol intolerance that is often a symptom of the disease.

Chapter Fifteen
Magnesium Can Be a
Missing Element in CFS

Magnesium is a trace element that is necessary for the activities of many enzymes; serious deficiency can cause vascular problems, convulsions, tremors, depression, and psychotic behavior. In 1990, a British research team discovered that not only did CFS patients have a deficiency of magnesium in their red blood cells, but that magnesium injections helped some symptoms to improve.

In the British study, 35 CFS patients were divided into two groups. One group received a magnesium injection once a week for six weeks; the other group received a placebo injection (in this case, sterile water) once a week for six weeks.

At the end of the study, the patients who were treated with magnesium had much greater improvement in energy, pain, and emotional reactions than the placebo group did.

The British investigators concluded that, while magnesium may not be a cure for CFS, it could prove to be helpful in treating some symptoms of the syndrome.

Chapter Sixteen
There Is a Hormonal Imbalance in CFS Similar to the One in AIDS

The U.S. government’s leading Chronic Fatigue Syndrome researcher, Dr. Stephen Straus at the National Institute of Allergy and Infectious Diseases, wasted a great deal of the government’s resources for several years attempting to prove that CFS is a psychiatric illness, similar to depression. In a study in which he compared certain hormonal levels in CFS patients to those in people with depression, however, Dr. Straus uncovered a hormonal abnormality that contradicted his own theory.

Dr. Straus, working with researchers at the National Institute of Mental Health as well as the National Institute of Child Health and Human Development, found that CFS patients have decreased amounts of a hormone called cortisol, which is part of the natural “fight or flight” response.

CFS patients also have decreased amounts of the hormone that instructs the brain to produce cortisol, which is called CRH (which is short for “corticotropin releasing hormone”).

Interestingly, cortisol deficiency is also one of the most common hormonal abnormalities seen in AIDS.

Both cortisol and CRH deficiencies can cause lethargy and fatigue. Therefore, Dr. Straus and his colleagues suggested that the CRH and cortisol deficiencies together, or either deficiency alone, could contribute to causing some of the symptoms of CFS.

In the course of this study, however, Dr. Straus inadvertently disproved his hypothesis that CFS is a form of depression. The cortisol and CRH levels found in patients with depression are opposite to those found in CFS patients: people with depression have increased amounts of both CRH and cortisol.

Although Dr. Straus’s hormone study contributes to our understanding of one system that doesn’t work in CFS, it unfortunately doesn’t help in finding a treatment or cure. Because of the complex way in which hormonal systems interact, giving CFS patients extra cortisol would signal the body that it isn’t necessary to make more cortisol. This could worsen the deficiency.

Despite government documents acknowledging that cortisol treatment of CFS patients could be dangerous, Dr. Straus proposed a clinical trial to treat CFS patients with compounds like cortisol.

Dr. Straus’s possibly dangerous plan to treat CFS patients with steroids like cortisol also fails to take into account the fact that the growth of Human Herpes Virus 6 and other viruses is stimulated by steroid drugs.

If HHV-6 is causing CFS by growing out of control, cortisol treatment might worsen the illness in ways that we don’t even understand yet.

A medical bulletin broadcast on CNN in early 1993 reinforced the point that treatment with steroids such as cortisol can have unexpected negative side effects. The report involved a young boy whose asthma was being treated with steroids (like cortisone) when he contracted a mild case of chickenpox.

Chickenpox is caused by a herpes virus called Herpes zoster. Although it is a childhood illness from which most people recover with no deleterious after-effects, this young boy died from chickenpox.

According to the CNN report on the boy, the steroid being used to treat the boy’s asthma caused his Herpes zoster virus to grow out of control and kill him.

AUTHOR’S NOTE: To read this book in its entirety now, you’ll find America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syn­drome Epidemic And Its Link To AIDS, Updated 2^nd Edition (2022, available as a Kindle ebook and a paperback on Amazon.com).