Tag: CFIDS

General interest/Health/Money
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Cancer, Viruses & Informed Consent

by Fran Johns

A commentary about cancer screenings and surrounding questions posted yesterday brought a thoughtful reader response: “Science, including public health,” wrote davidlosangeles, “is an evolving process.”  Unquestionably so.

What we the consuming public need to understand is not the science as much as the personal responsibility. Today’s New York Times features another story on the front page of the Business section (some of us still follow old-fashioned newsprint) by Duff Wilson about “Research Uproar at a Cancer Clinic”, namely the highly regarded Carle Foundation Cancer Center in Urbana, IL. It’s another instance of respected professionals questioning each others’ respectability — or protocols, or carefulness, to use gentler terms than are actually being used. One of the issues raised is that of informed consent, and here is where we the consuming public come in. Whether we are cancer patients, CFIDS sufferers or mostly healthy people susceptible to the usual ails, it is incumbent upon the individual to know what he or she is agreeing to, and to know as much as possible about the projected outcome. We’re all in a giant clinical trial here on the planet. Nobody really knows about the outcome, but participation in mini-trials along the way can be valuable and is certainly laudable. Just know what you’re doing.

I am a continuing participant in the Women’s Health Initiative study now well into its second decade, though the primary issues are over and done with. I didn’t try any new hormone replacement therapies or drastic lifestyle changes, mainly because I’m pretty wimpish, but I read every word of the small print in the reams of documents that came along and tried hard to appreciate what the pitfalls and premises were. It was a valuable study, and hopefully will continue to turn up usable data.

Other studies are underway, and more will undoubtedly begin, regarding the current hoopla over XRMV, and H1N1. And heaven only knows how many other viruses, techonological advances, genetic possibilities and scientific wonders are out there to create great harm or great benefit.

Since the benefits are to the buyers, it’s appropriate that the buyer beware.

California/General interest/Health/Politics & Causes
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Cancer Gurus, CDC – Whom can you trust?

by Fran Johns

In the news of the past several days are reports that the American Cancer Society is about to concede that screenings for breast and prostate cancer — long touted as the holy grail of preventive medicine — have instead led to a great deal of over-treatment, and worse. Plus admission by the Centers for Disease Control and Prevention that their pooh-poohing of Chronic Fatigue Syndrome has left a lot of folks suffering, perhpas needlessly, for decades.

Who in the world is there left to trust?

I do trust my physicians at Kaiser, and continue to hope the crafters of our elusive health reform bills are looking in Kaiser’s direction. My breast cancer was detected through a regular mammogram. How frequent these screenings should be is still a matter of debate, but in my case early detection led to a quick mastectomy, a small price to pay for living happily a few more years after. (The ever-after business is not a principal to which I subscribe.) On the other hand, small as my tumor was, who’s to say it might have sat there harmlessly a few more years untreated? Please don’t get me wrong; I would not have opted for waiting to see. Just wondering.

I’m not so sure about prostate cancer screening. But since what seems nearly every man I know over 65 has been diagnosed with prostate cancer after a routine screening, it’s possible to wonder about this too. An October 21 New York Times article cites a new analysis by Dr. Laura Esserman, a professor of surgery and radiology at the University of California, San Francisco and director of the Carol Frank Buck Breast Cancer Center and Dr. Ian Thompson, professor and chairman of the department of urology at the University of Texas Health Science Center, San Antonio that “runs counter to everything people have been told about cancer: They are finding cancers that do not need to be found because they would never spread and kill or even be noticed if left alone.” We the healthcare consumers aren’t getting any breaks. Here’s a whole new dilemma to mull over and decide upon: to screen or not to screen, to treat or not to treat. In one group of gentlemen friends I know, others newly diagnosed with prostate cancer are invited to hang out for an hour or so and listen to the pros and cons of the various treatment options — because within the group are men who have gone down at least 4 or 5 different paths.

Another re-evaluation, this one a little more sinister, centers around the dismissive attitude long held by the venerable Centers for Disease Control and Prevention, guardian of our national health and welfare where things like viruses and other causes of infectious disease are concerned. In a Times op ed piece titled ‘A Case of Chronic Denial‘, Hillary Johnson reports on a recent study in the journal Science about a virus found in prostate cancers which will be referred to here by its shorter name, XRMV. It now turns out that there may be a link between XRMV and Chronic Fatigue Syndrome, more commonly referred to these days as CFIDS, and the work now going on in this area of research could be significant in treatment of the latter. Having had a number of friends and family members suffering from CFIDS, I admit to being among those who occasionally thought it might be partly in one’s head, but also aware of the degree of misery and disability CFIDS can bring.

This space is not a health authority. It is, rather aimed at those of us 50-somethings and over, many of whom have trusted many of the above. Trust is good. Open-mindedness is better. Questioning might be best of all.