As a patient of Dr. Cheney’s, I had access to his frequent emails discussing his thoughts and treatments regarding chronic fatigue syndrome (ME/CFS). In writing this article, I went back and read most of these emails. For quite a few of them, I had to research the acronyms and spend lots of time trying to understand them. I’ve tried to condense some of that knowledge into this brief summary.
This document has four parts:
- A list of the acronyms used throughout so it may be a little easier to understand.
- A summary of Cheney’s analysis of what is the underlying problem of ME/CFS
- His current treatment regimen (as of March of 2015)
- My comments on the treatment regimen and costs
- IVRT – Isovolumetric relaxation time is an interval in the cardiac cycle from the closure of the aortic valve to the onset of filling by opening of the mitral valve. It can be used as an indicator of diastolic dysfunction. Dr Cheney measures it using Doppler echocardiography. He believes increased IVRT is a key feature of chronic fatigue syndrome.
- GSH/GSSG ratios – The ratio of reduced GSH to oxidized GSH (GSSG) is an indicator of cellular health.
- PC – Phosphatidylcholines are a class of are a major component of biological membranes and can be easily obtained from a variety of readily available sources, such as egg yolk or soybeans. Lecithin is made up of Phosphatidylcholine.
- NADPH oxidase (nicotinamide adenine dinucleotide phosphate-oxidase). NADPH oxidase generates superoxide by transferring electrons from NADPH inside the cell across the mitochondrial membrane and then coupling them to molecular oxygen to produce superoxide anion, a reactive free-radical.
- ONOO (3-Nitrotyrosine or 3-NT) Nitrotyrosine is a product of tyrosine nitration that is mediated by reactive nitrogen species such as peroxynitrite anion and nitrogen dioxide. Nitrotyrosine is identified as an indicator or marker of cell damage, inflammation as well as NO (nitric oxide) production. Nitrotyrosine is formed in the presence of the active metabolite NO. Generally in many disease states, oxidative stress increases the production of superoxide (O2−) and NO forming peroxynitrite (ONOO−) a destructive free radical oxidant. Research shows that nitrotyrosine levels can be reduced by N-acetyl cysteine, which is a precursor to glutathione, one of the body’s primary endogenous antioxidants
- Peroxisomal dysfunction – peroxisomes make myelin (white matter) and de-corrupt cell membranes
- CNS – Central Nervous System
- ATP – Adenosinetriphosphate; it supplies large amounts of energy to cells for various biochemical processes,including muscle contraction and sugar metabolism.
Chronic Fatigue Syndrome – Dr. Cheney’s Central Hypothesis
If you ask Dr. Cheney what all ME/CFS patients have that is not normal, you are liable to get a difficult to follow discussion so I am providing my understanding of his hypothesis. The key process in ME/CFS involves a breakdown in the mitochondria where superoxide is reduced to water.
This breakdown leads to a host of other physiological effects including low GSH/GSSG ratios, higher levels of ONOO, low cardiac output and corrupted cell membranes. The corrupted cell membranes are responsible for a leaky Blood Brain Barrier (BBB) and ultimately neuro-inflammation, as well as a leaky gut and gastrointestinal issues. Low GSH/GSSG leads directly to low NADPH which reduces peroxisomal function leading to the diffuse white matter losses seen in NeuroQuant MRI scans of the CNS.
Dr. Cheney’s gold standard test of whether a person has ME/CFS is performed using a 3D cardiac echocardiograph machine. He measures IVRT before and after the administering of supplemental Oxygen. If there is a negative response to oxygen as measured by the change in IVRT, then the person has ME/CFS. He, also, uses the IVRT response to test his various treatments. For example, tap water produces a negative IVRT response, while Fiji and Iceland water produce a positive IVRT response.
The inability to reduce superoxide rapidly to water faster than it is produced is also found in HIV. In two articles produced in 2002/2003, it was suggested that crippling superoxide detoxification is a survival mechanism that viruses which shift the cellular environment to a more oxidized redox state use. The human response to this redox shift is to down regulate mitochondrial function to produce fewer electrons and therefore less superoxide – but also less ATP. Those that can do this better are more stable though they are functionally limited – ME/CFS. Those that cannot, are very unstable and far sicker.
From Cheney’s perspective, we are lucky we have ME/CFS relative to some other diseases. The difference between ME/CFS and diseases like cancer, MS or lupus, is that ME/CFS is fundamentally an adaptation to prevent disease and death, and is therefore potentially reversible. This is played out by spontaneous recoveries that occur from time to time. Dr. Cheney, however, has not found a cure or seen anything that reverses the oxygen toxicity to normal, except Stem Cell therapy, which he tried in 2010. However, the results only lasted one month and cost $30,000 per patient.
Cheney thinks ME/CFS research is fragmented because of the mistaken belief that CFS occurs for many different reasons and produces distinct sub-populations. From his perspective there are no sub-populations; every person with ME/CFS has Oxygen toxicity as described above.
Dr. Cheney’sTreatment Recommendations
You can refer to my first two articles to see Dr. Cheney’s basic lifestyle modifications and baseline treatment recommendations. Please note that all Dr. Cheney’s treatment recommendations are based on individualized testing using IVRT. The recommendations given here are a generic approach.
This recipe is for microsomalized PC with added glucose to support NADPH and glucuronic acid production. Glucuronic acid is formed when glucose interacts with oxygen and creates a slightly different structure, through a process known as oxidation. This acid’s main function is to combine with toxins and eliminate them from the body. The formation of glucuronic acid takes place in the liver.
- 18 tablespoons of spring water (Iceland Springs of Fiji)
- 4 tablespoons of Liquid PC (BodyBio)
- 1 tablespoons of organic dextrose (glucose) derived from Tapioca from www.naturesflavors.com
Mix in a mixer (VitaMix is the best). It makes an 8 day supply that should be kept in the refrigerator.
Dose is 3 tablespoons per day (2 tablespoons in AM and 1 tablespoons in PM) with or without food
The membrane therapy will help remake cell membranes and reduce BBB leaks which underlie neuroinflammation driving many of the symptoms, especially pain and sleep issues.
He also recommends adding Butyrate at one capsule twice a day with meals. Butyrate helps improve cell membranes and is a gut anti-inflammatory and gut energy source and gut anti-fungal. Probiotics are also good at producing Butyrate. He recommends using Butyrate for the first month and then switching to a high quality probiotic.
He also recommends Bentonite Clay at 1 teaspoon in 3-4 oz of Spring Water given daily with meals. Bentonite Clay can cause constipation so add 1/2 teaspoon or more Epsom Salts to the Bentonite Clay if it is constipating. Bentonite Clay binds toxins in the gut including toxic lipids mobilized by membrane therapy.
Get Bentonite Clay from www.uniquehealing.com and get the bag of Bentonite Clay powder.
Dr. Cheney’s Anti-inflammatory Protocol
- Quell (High EPA) fish oil from Douglas Labs (www.douglaslabs.com) — one capsule
- Colavita Olive Oil (One tablespoon) – any grocery store
- RiboGen (one capsule from www.lifeextension.com or www.amazon.com)
Take 1) 2) and 3) all together once or twice per day with or without meals plus 4) Wobenzyme N — 4 caps in AM on empty stomach obtained from www.amazon.com
1) 2) 3) and 4) together act as a multifaceted anti-inflammatory approach and will help your pain. RiboGen or 3) gets at the fundamentals of your low energy state. Ribogen improves redox support and thereby indirectly improves NADPH production.
Cheney is currently looking into combining Cannabidiol (CBD) oil with Porcine Brain Cell Signaling Factors (CSF) to produce a skin paste to help reduce neuro-inflammation (via antagonism of the CB1 receptor). CBD is used to treat seizures (medical marijuana) and is being tested for other conditions.
Electro-Magnetic Forces (EMF)_
Cheney also keeps reiterating on the need to protect yourself from the harmful effects of EMFs. He believes excessive EMF exposure impairs the successful buffering that free electrons provide as it interferes with membrane function and therefore is pro-inflammatory. He believes it also interferes with superoxide dimutase’s (SOD) electrostatic field which impairs it from transmuting superoxide to hydrogen peroxide (the first step in the process of converting superoxide to water).
He recommends not using cordless phone as well as the use of kill switches and Faraday Cages in the bedroom. He asserts that turning off their bedside cell phones and cutting power to the bedroom at night via the fuse box helps ME/CFS patients sleep better. The fact that sitting in front of computer screens exhausts people with ME/CFS suggests EMFs are a problem.
My Comments on My Time with Dr. Cheney
One of the good things about Dr. Cheney is that he is always trying to find the next thing which might cure/help people with ME/CFS. For example, when I first went to see Cheney, he was very excited about VIP (Vasoactive Intestinal Peptide) which has a very positive affect on IVRT and the 3D-echo and is part of the treatment used by Dr Shoemaker in treating mold. Over the course of the year, though, his comments and his recommendation of this as a treatment disappeared.
Prior to that, he was looking at Nagalase levels and treating it with GcMaf. This, also, had limited discussion over the year, but more so than VIP.
Another good thing about Dr. Cheney is he would post answers to questions submitted by his patients to his entire patient population if he thought the question and answer would be helpful. Many of my questions were answered this way.
The bad part of seeing Dr. Cheney for me was the cost. He has now raised his rates to $810 an hour. That and the fact that I did not see any benefit from his treatments are why I decided not to continue as a patient with him after 1 year.
My next one-day visit (he requires at least one visit a year) would have cost me $5000 – $6000. The cost of the treatments that I tried over the course of the year was prohibitive as well. VIP cost $300/month, B12 – $300/month, GcMaf – $720/month, cell signaling factors – $400/for 2 months. I tried many of these things over the course of the year, gave up on most due to the cost and lack of noticeable improvement.
Also, having health insurance was useless, as they covered none of the treatments and little of his original visit. In fact, I am still fighting with them.
Over the course of the year, I spent somewhere in the vicinity of $15,000 just on Cheney and his treatments and despite a healthcare plan that was supposed to allow me out of network coverage after I met my $5000 family deductible, I got about $1700 back.
Perhaps, when I win the lottery, I can implement all of the things that could be potentially helpful. What I shared with you, I think is a somewhat affordable offering that provides core elements of his treatment plan.
Honestly, since I stopped all of my various doctor’s treatments and went on my own diet and supplement plan, I have felt the first noticeable improvement in my health in 2 years. The diet plan is simple, but not easy. Vegan, no sugar, no gluten. Some of the supplements I am taking overlap with Cheney’s recommendations, but I think the diet is the most important aspect. I base that on a lot of reading but also from knowing real people who have either fully or largely recovered from conditions that are similar to or the same in nature as ME/CFS/SEID.
Check out Chris’s other blogs on his time with Dr. Cheney