Dr. Cheney gave a lecture on ME/CFS (chronic fatigue syndrome) on April 25th, courtesy of the Northern Virginia CFS/ME/FM and OI Support group. According to a report of the talk posted by Chris on CFSFMExperimental Yahoogroup on April 27th, Dr. Cheney, a creative physician and provocative speaker, did not disappoint. In a three hour non-stop, often extemporaneous lecture, populated with power-point slides, Dr. Cheney continued to plow new ground.
Still the Heart of the Matter – Dr. Cheney shocked the patient community five years ago when, shortly after his own heart transplant operation, he announced that ME/CFS patients were in ‘heart failure’ and that energetic problems with the heart were at the core of this disease. His two abstracts at the recent IACFS/ME conference asserted that ‘oxygen toxicity’ problems in the heart were fundamental and that cell signaling factors may be helpful.
Chris reported that Dr. Cheney believes oxygen toxicity is the ‘control point’ around which this disease revolves. (Interestingly according to his IACFS/ME abstract ‘oxygen toxicity’ is not uncommon with 65% of his healthy controls (and 100% of his ME/CFS patients) testing positive for it. (This suggests that it’s the degree rather than the presence of oxygen toxicity that Dr. Cheney believes is unique to ME/CFS).
A New Direction – Dr. Cheney is using something he calls ECHO Terrain mapping to assess the effectiveness of his treatments. This appears to involve placing a substance on the patients skin and then measuring their IVRT (speed with which the heart expands during diastole). Substances which increase IVRT are believed to have negative effects. This has lead him to some surprising findings.
- Glutathione, a key aspect of his treatment protocol for many years, is not helpful and can even be harmful for some patients. Dr. Cheney pioneered the use of whey powder to increase glutathione levels in this disease about 10 years ago and glutathione depletion has long played a core role in his model of chronic fatigue syndrome (and still does).In 1999, declaring that glutathione had potent antiviral effects he reported that of eight patients taking undenatured whey five improved and one had so much energy that he had to lower his dose. He stated that denatured whey powder supplementation resulted in increased well-being, reduced free radical activity, increased immune functioning and reduced viral load. The ME/CFS community took note and the soon everyone was buying expensive cans of this designer whey protein product. Not long after that the specialty whey protein field took off with brand after brand hitting the market.As of 2005 Dr. Cheney was still referring to ‘the power of undenatured whey’ and glutathione. Dr. Cheney’s statements are still used by several whey manufacturers to advertise their products. But that is over. Dr. Cheney now believes that glutathione – far from being helpful – can be harmful. So interestingly enough, so is COQ10 – another important leg of his 2005 treatment protocol.
- Methyl B12 and folapro – two features of Rich Van Konynenburg’s Simple Methylation protocol – are, as well, at least according to the ECHO terrain maps – are both either not useful or can be harmful to the heart as well. (Rich Van Konynenburg reported that his Simple Methylation Treatment plan use hydroxy B-12 not methyl B-12.)
- Vitamin D3 is toxic.
- D-Ribose, a product used by congestive heart failure patients, falls into the same category.
ECHO Terrain Mapping – A Dissenting Viewpoint – Rich Van Konynenburg argues that short-term ECHO terrain tests – which measure IVRT’s immediately following exposure to a substance may not reflect longer term results. S
Current Treatment Protocol: With his high hourly rates and at times enormous protocols Dr. Cheney has been known as the Cadillac of ME/CFS physicians. The ECHO Terrain mapping procedure, appears, however, to have put a real dent in the size of his protocol. Dr Cheney now advises patients to back off supplements if they’re not bringing noticeable benefits.
Much of Dr. Cheney’s base protocol is still intact; Klonopin, Isoprinosine, Nexavir, hydroxycobalamine (B-12) are still being used but it looks like he’s pulling back on all energy enhancing substances (glutathione, COQ10, D-Ribose).
Chris reported that once one gets past the base protocol Dr. Cheney is focusing on four treatment types now;
1. Artesunate – an anti-malarial drug
2. Cell signaling factors
3. Gut dysbiosis – probiotics, digestive enzymes, diet
4. Stem cell infusion.
Interestingly while Dr. Cheney remains focused on heart he’s also convinced – in line with several other physicians – that the gut plays a critical role in this disorder – stating that unless the gut is fixed nothing else will be.
Artesunate – an antiviral and redox factor used to treat malaria – is reportedly a key factor which has allowed Dr. Cheney to double his cure rate. (Malaria medication! – a testament to Dr. Cheney’s seemingly ceaseless search to find treatments that fit his model of ME/CFS).
Dig Deeper: For more on Artesunate
Cell-Signaling Factors – Dr. Cheney has pioneered the use of ‘cell-signaling factors’ in this disease. Interestingly he reports that adrenal and thymus cell-signaling factors reduce patients energy and heart while brain and liver CSF’s increase energy levels and cited the significant improvements patient experienced on them.
Dr Cheney’s IACFS/ME abstract does report significant improvement but it was hardly earth-shattering; patients improved an average of 10 points on the Karnofsky scale of functioning (0-100 range). Their stroke volume and IVRT (a measurement of diastolic functioning) also improved.
Stem Cell Infusions – are used in non-responders which tend to be people over 40. In order to reduce costs they’re been done in Costa Rica and Panama. They take six months to evaluate but Chris reports that Dr. Cheney says that they ‘obliterate oxygen toxicity’ and patients have been ‘transformed’.
Dr. Cheney is may be our most creative physician. He is constantly scouring the medical field for new treatment possibilities and regularly introducing new treatment options. Whether he’s on the right track, is of course, unclear. The fact that he now believes that significant portions of his former protocol are not only not helpful but actually harmful is eye-brow raising to be sure – one wonders why that wasn’t evident before. The ‘significant’ but still quite limited progress of his recent patients indicates that ME/CFS treatment under Dr. Cheney – and every physician – is still, after 25 years on the job – a work in progress.
Dr. Cheney is opening two websites; one devoted to the clinic and one to his research. You can sign up for newsletters at cheneyclinic. com, and cheneyresearch. com. Video’s of the talk will be available at some point on the CFS and FM Support Group of Dallas http://www.dfwcfids.org/index.shtml
(Check out the comments below for more from Chris and other patients)