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Dr. Paul R. Cheney

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Interview by Roger Burns 

CFS pioneer Dr. Paul Cheney was interviewed on the Roger Mazlen radio show on February 28, 1999. Cheney is known for having investigated the Nevada outbreak in 1985 and he has focused on CFS research since then.

In the interview, Cheney describes how he is currently looking into how liver dysfunction may play a role in CFS, and he discusses parallels between CFS and Reye's Syndrome. Cheney is now investigating the role of glutathione in the apparent damage seen in patients detoxification system, and he has tried a remedy that benefits some patients.

Dr. Cheney also reports that the dysfunctional RNase-L enzyme discovered by Suhadolnik seems to dissipate in patients after several years. His experience with Ampligen testing is that it tends to benefit patients who have the dysfunctional RNase-L and have been ill for a shorter period. The treatment seems to have enduring effects only if applied over a long term.

Cheney also discussed some cases that involved chlamydia pneumoniae, but it's not clear whether that organism might be causing CFS or may be merely a secondary problem facilitated by a down regulated immune system in those cases.

The full text of this interview can be found on the internet. 

This interview review compliments of the CFS News.

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Philadelphia, February 1999: Cheney Presentation Transcript

Dr. Cheney was one of several presenters at a February conference on CFIDS in Philadelphia. A generous soul transcribed her audiotapes and posted them on the “CFSFM Experimental” yahoo discussion list at health.groups.yahoo.com/group/CFSFMExperimental/. Some of the material overlaps the presentation Dr. Cheney made at our seminar, but much of it is different or more detailed. If you would like to view these notes, visit this page (feb99.htm).

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Philadelphia, November 1998, (GPCA) CFIDS Symposium: Cheney and Suhadolnik Keynote Summary or Video Available

The Greater Philadelphia CFIDS Alliance is offering a written summary of the keynote lectures by Dr. Cheney and Dr. Suhaldolnik (RNase-L researcher). You can request an e-mail copy of the summary by contacting GPCA (at) aol (dot) com. If you do not have internet or e-mail access, you can contact Carol Sieverling to receive the four-page summary by snail mail.

It is also available at this link or from the website: www.angelfire.com/ri/strickenbk/CheneyGPCA.html (Thank you to Tom Trissel for the Greater Philadelphia CFIDS Alliance.) They are also offering a videotape of the two keynote lectures and a panel discussion that includes several area physicians. Make a $16.00 check payable to “GPCA,” mail to Sara Ferraro, 4 East Manoa Rd., Havertown, PA, 19083.

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Response to “Chronic Neurotoxin” Test and Treatment

Editor’s Note: The following is based on notes taken during a recent conversation with Dr. Cheney. He has not edited or reviewed this info. However, he plans to incorporate the test and a modified version of the treatment described below (and featured in our newsletter and Dr. Raines seminar) into his practice.

The book “Desperation Medicine,” and the website where it can be ordered, www.chronicneurotoxins.com, contain intriguing information about a test and a treatment to detect and remove neurotoxins being generated within our bodies. (Find this information summarized in the October '01 issue of The DFW Lighthouse newsletter.) The toxins end up in the brain (thus, neurotoxins) and other organs of the body.

Used by the toxicology division of the Environmental Protection Agency, many in our group took this test at the Dr. Raines seminar in December. The test is simple, inexpensive, quick, and non-intrusive. You just look at a card with a series of lines of varying shades of gray and indicate whether they are vertical, left-leaning, or right-leaning. It is the visual equivalent of a hearing test, detecting what frequencies you can and cannot perceive. It’s called a VCS test: visual contrast sensitivity test but is sometimes also called a FACT: functional acuity contrast test.

Dr. Cheney talked at length to the company that makes it, Stereo Optical Co.(800.344.9500). The test equipment costs $275. Doctors typically charge about $25 for the test.

Dr. Cheney explained that trouble perceiving mid-range frequencies indicates the sub-cortical/deep brain injury typical of CFS, problems perceiving low frequencies indicate cortical injuries such as Alzheimers, and problems perceiving high frequencies indicate injury to the retina or optic nerve. These visual problems are usually very subtle and not at all apparent apart from the test. He found it to be a very intriguing test, has ordered it, and will be incorporating it into the tests given at his clinic.

The treatment recommended in the book and website is 4 scoops daily of Questran (cholestyramine) on an empty stomach, an old cholesterol drug. It is not actually absorbed—it never enters the system. It stays in the gut; binding and then eliminating fat-soluble toxins that otherwise are reabsorbed and circulate repeatedly throughout the body. (Lyme patients take pioglitazone/Actos to minimize the terrible herx; however, this drug makes CFS patients worse.)

After much investigation and a long conversation with the book’s author, Dr. Cheney believes that this may be a helpful tool in the treatment of CFIDS. However, he will implement the protocol somewhat differently. He feels that, like any aggressive detox agent, it could mobilize too many toxins too quickly. Dr. Cheney will use much, much lower doses. Start low and build slowly, is what he said. I think he said that he had started his first patient out on ¼ teaspoon at bedtime.

Another change in the protocol occurred when Cheney learned that QUESTRAN CONTAINS 1 TEASPOON OF PURE SUGAR PER SCOOP. Taking a total of 4 teaspoons of sugar a day on an empty stomach per the original protocol could cause or aggravate gut dysbiosis — overgrowth of harmful bacteria and fungi. Sugar feeds the candida and other things many of us have.

There is a Questran Light, but it contains aspartame, which is not a good option. Cheney talked to Bristol Myers, the manufacturer of Questran. He believes that, while not widely used or available, it is possible to get raw Questran without sugar or aspartame. Having patients add Stevia to it to sweeten it safely is an option. (This stuff, even with sugar or aspartame, is a powder that reportedly tastes awful.)

Dr. Raines (817.645.3967), who has offices in Fort Worth, Cleburne, and Dallas, said that the pure Questran without sugar or aspartame is available from the compounding pharmacist that they use (Abrams Royal Pharmacy; 214.349.8000). So presumably, other pharmacies could also order it from the same supplier.

Another side-effect to address is the constipation it causes in some patients. I believe Cheney said that that could be safely addressed but I do not remember how, if indeed he even said how.

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