Why has ME/CFS Research Stalled for Four Decades?
The troubled history of scientific ineptitude and patient suffering— AMERICA’S BIGGEST COVER-UP: Chapters 19 & 20
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 2nd 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 is the tenth of these published sections.
AUTHOR’S NOTE: Due to an unexpected WiFi situation this week, this will be my only post and it is being sent to both paid and free subscribers. Fingers crossed for the future of my WiFi!
Chapter Nineteen
Like AIDS Patients, CFS Patients May Be Unusually Susceptible to Tuberculosis
Tuberculosis is a sometimes-fatal illness that was all but eradicated before the AIDS epidemic began. It is possible for healthy people to become infected with the tuberculosis germ (a bacterium) without becoming sick; this is called a latent infection. But because people with AIDS do not have intact immune systems, they do become sick—and, at the same time, are contagious to other people—when they encounter the TB germ.
TB is of particular concern to public health officials because of the way it is spread, which is in saliva droplets that contain bacteria. While prolonged, close contact between people breathing the same air—like people in jail—is usually required for TB to spread, it is more casually contagious than almost any other equally serious illness.
And people whose immune systems aren’t functioning properly—like AIDS and CFS patients, as well as cancer patients—become infected, and sick, with tuberculosis much easier than healthy people.
The natural killer (NK) cells are a front-line defense against other cells infected with TB germs but, in both AIDS and CFS, the NK cells don’t work properly.
Ironically, new studies have shown that NK cells do not function properly in people who have TB. Therefore, the very cells that should be protecting the body against the TB infection are made less effective by it.
Therefore, a person whose NK cells were not working well in the first place can become very sick, very fast, from TB.
Most people are aware by now that AIDS patients are particularly vulnerable to TB. What isn’t commonly known is that CFS patients are also more susceptible to TB than are healthy people, according to the Associate Director of the Centers for Disease Control and Prevention Tuberculosis Division, Dr. Donald E. Kopanoff.
Dr. Kopanoff told Spin magazine in December 1991 that CFS patients, because they are in generally poor health, are at much greater risk for contracting active TB than the rest of the public.
Another part of the immune system that doesn’t work properly in CFS patients is the cell-mediated immunity; this is the type of immunity that is controlled primarily by T4 cells. Both CFS and AIDS patients sometimes have severely decreased numbers of T4 cells, which is partially why their cell-mediated immunity doesn’t work.
Cell-mediated immunity produces the type of immune response that causes a bump to rise at the site of a skin test for TB. If the cell-mediated immunity is not working properly, no bump is formed at the site of the test, even if the person is infected with the tuberculosis germ.
Therefore, when the immune system is not functioning properly, there is no easy and reliable way to distinguish infected from uninfected individuals. The millions of people suffering with CFS all over the world could turn TB into a disaster of enormous proportions, which is another reason why patients should demand that the truth be told about this epidemic.
Chapter Twenty
CFS Patients Have a Brain Defect Similar to That Found in AIDS Dementia
It has been known for some time that CFS patients have abnormal blood flow in their brains; that is, some areas of the brain are not getting as much blood as they should. Very recently, however, studies of patients with AIDS dementia have shown that they, too, have abnormal brain blood flow, raising the question of whether a similar disease process is taking place in both sets of patients.
It’s only been possible to measure blood flow in the brain with the recent development of very specialized brain scan technologies. One type of brain scan that can detect blood flow abnormalities is called SPECT (which stands for “single photon emission computer tomography”).
Dr. Ismael Mena has studied CFS patients’ brains using SPECT scans at the University of California-Los Angeles, where he is a professor of radiology. Over several years’ investigation, Dr. Mena has consistently reported that 71 percent of CFS patients have a diminished flow of blood in their brains.
Dr. Mena has also commented at scientific conferences that CFS patients do not have equal blood flow on the two halves of their brains. That is, when the blood flow on the right and left sides (or hemispheres) of the brain were compared in individual CFS patients, the flow in the two halves of the brain can differ by twice as much as it does in healthy people.
This information suggests that some type of organic brain disease may be a component of CFS. While it has long been recognized that AIDS patients can develop very serious mental problems, sometimes labeled “AIDS dementia,” only recently have such patients been studied using SPECT scans. The similarity between “AIDS dementia” patients’ SPECT scans and those of CFS patients are striking.
SPECT scans in AIDS patients were discussed at the 1992 international AIDS meeting in Amsterdam by a research team from the Houston Immunological Institute. Rather shockingly, they found that exactly the same percentage of AIDS patients—71 percent—as CFS patients had abnormalities in brain blood flow. The Houston research team also found that more severe cases of AIDS dementia showed greater abnormalities in brain blood flow, and they suggested that SPECT scans could provide a very important diagnostic tool for physicians treating patients with AIDS.
Abnormal SPECT scan results have not yet been firmly associated with any of the mental abnormalities—short-term memory loss, for instance, or difficulty concentrating—observed in CFS patients. But as this still-new technique becomes more refined, it may well help unlock some of the mysteries of the mind associated with not only CFS, but also AIDS.
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 2nd Edition (2022, available as a Kindle ebook and a paperback on Amazon.com).
There really should be lawsuits against the CDC/NIH for allowing this 'AIDs like' illness to go ignored for so long. Since it's so easily transmitted, I can imagine that there have been and are many more millions that have been infected but didn't/don't even realize it. Anyone with autoimmune or rare cancers should have their immune systems checked for deficiency. People get HIV tests and if they're negative, they assume everything is fine with their immune systems. That's what the doctors assumed with my husband and I until (I insisted) they checked. The CDC/NIH need to admit that they have made a huge mistake.
Some have a very different view of TB 'germs' and believe that it actually plays a beneficial role but gets blamed for causing illness based on misinterpreted correlations. Regardless, fyi:
December 3, 2021:
The U.S. Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR) have also admitted they have no record, authored by anyone, anywhere, ever, describing a controlled experiment using purified mycobacterium tuberculosis and showing that it causes TB and satisfy Koch’s Postulates:
https://www.fluoridefreepeel.ca/wp-content/uploads/2021/12/CDC-tuberculosis-PACKAGE-redacted.pdf
Does mycobacterium tuberculosis (or mycobacterium bovis) cause TB and satisfy Koch’s Postulates?
Michael S. in New Zealand filed FOI requests for records showing the above. The responses:
Ministry of Health, November 2021:
https://www.fluoridefreepeel.ca/wp-content/uploads/2021/11/2021-11-19-NZ-MoH-TB-Redcated.pdf
Crown research institute, the Institute of Environmental Science and Research (ESR), November 2021:
https://www.fluoridefreepeel.ca/wp-content/uploads/2021/11/NZ-2021-11-23-ESR-TB-redacted.pdf
Biosecurity NZ / Ministry of Primary Industries, November 2021:
https://www.fluoridefreepeel.ca/wp-content/uploads/2021/11/2021-11-29-NZ-MPI-TB-M-Redacted.pdf
Biosecurity NZ / Ministry of Primary Industries, November 2021 (re mycobacterium bovis):
https://www.fluoridefreepeel.ca/wp-content/uploads/2022/05/2021-11-29-NZ-MPI-TB-B-Redacted1.pdf
Operational Solutions for Primary Industries (OSPRI New Zealand Limited), December 2021 (re mycobacterium bovis) (see page 4):
https://www.fluoridefreepeel.ca/wp-content/uploads/2022/05/2021-12-20-OSPRI-TB-B-redacted1.pdf
All of the above NZ institutions failed to provide or cite even 1 responsive record.
Michael’s summary of the situation: TB Disease Causation Inquiry — by Michael S.
https://www.fluoridefreepeel.ca/wp-content/uploads/2022/05/TB-Disease-Causation-Inquiry.pdf