Paul Cheney talk, Fairfax, VA, April 25, 2009

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by consuegra, Apr 27, 2009.

  1. consuegra

    consuegra New Member

    I attended the lecture of Dr. Paul Cheney in Fairfax, VA on April 25, 2009. Dr. Cheney gave one of his astonishing three-hour lectures to a group of about 100 listeners. I have heard Dr. Cheney talk in person on several occasions and have also looked at two three-hour lectures of his on DVD. I was looking forward to hearing his latest talk and I was not disappointed.

    I am a non-scientist, who surveys the field of CFS. I go to lectures and conferences and listen and try to get a feeling for what is happening. I am biased toward Dr. Cheney and any other physician/researcher who devotes themselves to this peculiar disorder.

    Dr. Cheney gave a non-top three-hour lecture. He presents using power point but, unlike others who just mindlessly read information off the screen, Cheney talks mostly extemporaneously, with a clear direction and command. He has a lot of ground he wants to cover and knows how to traverse it. He takes one five- minute break. At the end he answers questions for twenty minutes or longer. He was clearly tired at the end.

    For his lecture and ideas on diastolic dysfunction research and earlier treatment plans one can consult online information and previously released DVDs of his lectures. Dr. Cheney does not shy away from presenting his views. Information on this April 25th lecture will be published on two new Internet sites of Dr. Cheney – cheneyclinic.com, and cheneyresearch.com. You can leave you name at these websites and be notified when the sites are activated. A DVD is also being made of this lecture - so interested parties can investigate it themselves.

    Recent information is available online on his ideas about Oxygen Toxicity and Treatment with cell-signaling factors. These can be found online under “Oxygen Toxicity as a Locus of Control for CFS” and “Cell Associated Therapy for Chronic Fatigue Syndrome: Is this the Next Frontier?”

    I include a few notes from the lecture, items that struck me. I share them in hopes they might help others to focus on certain aspects of this disease to their benefit - as I have from the many contributions of others. In general, I look to independent physicians and researchers as the best hope to provide answers. Dr. Cheney is one of the best.

    The crux of this lecture was about Cheney’s ideas on Oxygen Toxicity and then on his current treatment plan. The talk presented a great deal of technical research information, with displays of IVRT and ECHO graphs and studies, which Cheney has applied to his patients.

    Dr. Cheney initiated the talk by stating his concept of “CFS as a compensatory mechanism to contain the redox problem (at the heart of it)”, and that fatigue is a mechanism for keeping worse things from happening.” This theme reappears throughout the talk.

    The talk was filled with familiar information about diastolic dysfunction. He feels that almost all CFS patients have diastolic dysfunction. “100 % of CFS patents have an energy related cardiac problem.” One of the primary symptoms of diastolic dysfunction is Orthostatic Intolerance (a problem with standing). He feels that CFS is a severe oxidative stress disorder, resulting from some provocation, or insult – viral or bacterial. He thinks that antiviral therapy is only effective in the beginning of the disease. He spent some time talking about the four phases of the disease.

    CFS patients cannot get oxygen into their tissues. If you administer oxygen to the patient, they get worse. Cheney believes that “oxygen is kept out as a compensation for keeping something worse from happening and the system accepts the consequences as compensation for not getting something worse”. With his testing method, Cheney detects “a 21% loss in energy in 30 seconds” when oxygen is administered to patients. He says that the CFS condition is close to a fetal physiology in two ways - 40% have PFO (an opening in the heart), and all have oxygen toxicity.

    Treatment of oxygen toxicity is in control of the outcome of this disease. Treat the oxygen toxicity correctly and the oxygen toxicity goes away – and the patient gets better.

    CFS patients have a defect in oxygen handling systems. This includes damage to red blood cells. The body compensates by keeping oxygen out and the result is low energy. Cheney discussed the four adaptations to low oxygen - and most CFS patients have all four. One of them is the methylation block –“another important defense mechanism against oxygen toxicity”. The push crash phenomenon is basically is a failure of the HPA axis to control oxygen toxicity.

    NAPDH is low, anabolically blocked which results in P450 becoming uncoupled, leading to all sorts of problems.

    Treatment

    Dr. Cheney feels that the best treatment follows the best understanding of “leverage”. He calls this the “control point”, and he believes in CFS this control point is oxygen toxicity. He describes himself as having “gone beyond” just treating the symptoms, or searching for the etiology or for specific viral culprits. He is interested in finding and attacking the “control point”, and getting patients back to a more functional state. Everything that he knows points to CFS as an oxygen toxic state. He asks himself: what is it that makes the oxygen toxicity go away?

    At this point Cheney spoke at length about two sticking points: mitochondria and P450, in relation to oxygen toxicity.

    Treatment 1.

    To correct things, Cheney uses cell-signaling factors (CSF), which are similar to “live cell” therapy as practiced in Europe for many years. This is not a new idea. For years Cheney has used a LMW peptide called Kutapressin. In recent years he has added other Cell-Signaling Factors (adrenal, thymus, heart, kidney, and bran). Cheney makes his own, presumably a gel. The one for the heart is from bison. Cheney explained how he felt that CSF worked in CFS and he demonstrated this with a study that he has done. This study was performed to investigate function, not symptom improvement. It was in two parts and the second part, using CSF, had a significant uptick in patient functionality. Improvement occurred within ninety days. 75% of the patients functionally improved and their oxygen toxicity improved. Non-responders oxygen toxicity did not improve. Improvement in responders was sustained.

    He ran through a set of permutations of the various CSFs, measuring for energy responsiveness on “Echo terrain maps”. He finds that the adrenal and thymus and liver create the most “backflash”, i.e. loss of energy, and that the pancreas, brain and heart CSFs bring the most energy response. He has created hundred and hundreds of ECHO terrain maps to determine energy response to the use of these agents. He sees the same thing without exception. 100% of patients display oxygen toxicity, all of the patients’ energy response drops with adrenal and thymus. All patients’ energy response goes up on heart (most responsive) and brain and bison liver CSF. Cheney says this is nothing more than a series of interrogations and out of it you can create a map.

    Cheney uses an ECHO “terrain map” to develop therapeutics.

    Healthy controls do not respond to CSFs.

    Also he is expanding his energy ECHO testing to various pharmaceuticals and supplements to see if they are helpful or hurtful.

    According to Cheney, citing evidence from his Echo terrain maps, Methyl B12 and Folapro “is toxic to CFS patients”. The methylation block, which he believes exists, is helping to prevent oxidative stress

    Magnesium always benefits these patients.

    Almost every case of CFS is toxic to fructose, almost universally responsive to glucose.

    “Glutathione in this disease is not a good idea in most instances.”

    “T3 is the worst hormone that you can give to a CFS patient.”

    “Vitamin d3 is toxic to this disease.”

    Cheney attacks the “Oxygen toxicity” with CSFs.

    Treatment 2

    Cheney characterizes people as part human and part something else – this something else being gut bacterium. “It links human illness to gut problems.” “You can’t have an illness without a gut problem.”

    Cheney has a program for gut dysbiosis and dysfunction that is similar to the one of Dr. deMeirleir. This is the first time that I have heard Cheney talk about this with such emphasis. Cheney stated that none of the other therapies work if this one is not included.

    Cheney attacks the gut dysbiosis with gut modification.

    Treatment 3

    Cheney treats his patients with Artesunate

    At normal human Redox environment, we are at our highest energy set point. At this normal redox set point, no virus cannot replicate. Viral replication is a function of redox.

    Artesunate is a powerful redox inhibitor. It shifts redox state to normal. Artesunate is a great antiviral and redox shifter. Artesunate is one of the most powerful antivirals known, active against all herpes viruses.

    Artesunate has great tolerance and safety and is a central feature of his treatment today.

    Cheney attacks the redox state with Artesunate.

    Cheney says, with this treatment, he has doubled the amount of cures, and that 75% of patients show improvement with this treatment modality:

    Treatment 4.

    Cheney gets a high percentage of responders from patients who are under 40 years of age. For non-responders, mostly over 40, he has been using stem cell infusions. The first three part of the treatment bring results in 90 days. The stem cell treatment takes six months to evaluate the effect. Cheney says that these stem cell treatments obliterate the oxygen toxicity, and that patients “has been transformed with stem cells infusions”.

    Cheney treatment
    1. Artesunate
    2. Cell signaling factors
    3. Gut dysbiosis – probiotics, digestive enzymes, diet
    4. Stem cell infusion

    Question period

    -Cheney was asked what medicines he likes. He mentions Klonopin, then low dose Doxepin. He does not think much of Neurontin.

    About Rich van Konynenberg, Cheney said this. He admires Rich and has had many lively discussions with him. He admires anyone who is attempting to organize a testable theory of this disease. Cheney agrees with some ideas of Rich’s. There is certainly evidence of a methylation blockage in CFS. Cheney believes that it is designed to help the CFS patient, and it is not the problem. Trying to unblock it with methyl b12 and Folapro makes the situation worse. In terms of glutathione Cheney thinks Rich is right in that there is lower reduced glutathione, but not total glutathione. Trying to supplement glutathione directly leads to increased oxidative glutathione. Taking glutathione in large doses is not the way to go. Cheney thinks that Rich is right in some ways, but is wrong in his conclusions.

    -Essential Fatty Acids – he uses them as a “good health move”, but is somewhat suspicious that they too might worsen “oxygen toxicity”.

    -His general message was to be careful what you take. If something is not bringing obvious benefit, it very well might be complicating the situation.

    -Supplementing with glutathione is unproductive and only raises oxidative glutathione.

    -CFS is a problem of energy - and d-Ribose won’t help. It just makes the problem worse. He says the same thing about co-Q-10.

    -About stems cell therapy, he mentioned Dr. Reardon and his stem cell work in Autism, and remarked in Autism’s close relation to CFS.

    -These stem cell treatments are done at clinics in Costa Rica and Panama. Cheney said that the clinics were located in these countries not because the process is illegal (which it isn’t) but because of costs.

    -Cheney feels that almost all patients have environmental illness to some degree. He thinks environmental illness overlaps with CFS but that it definitely is a separate entity.

    Chris















    [This Message was Edited on 04/27/2009]
  2. znewby

    znewby Member

    Thanks Chris. Very helpful. I will reread all this information because there is a lot there. I am surprised about d-ribose because I know for sure that my daughter is able to reduce pain very much on d-ribose but she did say that her energy levels have not changed. I wonder what Dr. Cheney thinks about low-dose naltrexone. I am surprised there were only 100 people there.

    His comments certainly conflict with Dr. Myhill's suggested protocol. A few years ago, Dr. Cheney was quoted as saying that about 50% of his patients appear to have diabetes insipidus and yet Dr. Teitelbaum doesn't mention it in his literature. It is good that his opinion is put out there. At least there is one common denominator - magnesium is very good. The problem is that his suggested treatment is not something that you can pick up at the local store other than magnesium probiotics and digestive enzymes. [This Message was Edited on 04/27/2009]
  3. bigmama2

    bigmama2 New Member

    thanks for posting.

    this is kinda disturbing. he is saying things like d3, t3, coq10, dribose, methyl b12, and folapro are bad for us? ahhhhhh, i am so confused.

    i wish we knew for sure what the answers are.

    bigmama2
  4. TeaBisqit

    TeaBisqit Member

    Thanks for posting this.

    Curious about the T3, since I'm dying with Hashimoto's lately. Synthroid did make me a million times worse, but the Raw Thyroid I'm now taking has helped.

    All his oxygen toxicity stuff just confuses me. I do understand that he's saying we're conserving energy to prevent something worse from happening. We've always known that. The body is compensating any way it can by sucking the energy out of each organ to keep us alive. Just not convinced he's got a real treatment going yet that really works.
  5. sascha

    sascha Member


    thank you so much. you are a great transmitter of complex and even esoteric information. it seems that Dr. Cheney has delved deeper than anyone else. i'd love his treatment protocol but am sure costs are prohibitive. THANK YOU- Sascha
  6. louiesgirl2

    louiesgirl2 New Member

    I tried to read and understand all of this. However, not being a medical professional I had great difficulty. Perhaps someone can translate it for the lay person.
  7. acer2000

    acer2000 New Member

    Is he going to publish his findings?
  8. consuegra

    consuegra New Member

    As I said before I was unexpectedly riveted by this talk. On the other hand, I was somewhat bludgeoned and my notes are not perfect.

    About the supplements, I too was unsure exactly what he was saying. I think in general it is worth looking at what you are taking and decide if it is benefiting you. He advanced the idea that if it is not, it might be actually making things worse. He went over some of the supplements and hormones very quickly and perhaps if I could see every word I still would not know exactly what he meant. For instance with the t3, I do not have a clue. Certainly someone with Hashimoto's should take what they need, depending on their case. Personally I do not think Hashimoto's fits into the regime of self-protected down-regulated systems that should not be treated. I have no clue what Dr. Cheney thinks about this. He made a quick negative reference to coQ-10, as if everyone knew about this. He definitely said that D-Ribose would not help with energy. He of course is looking at this through his prism, where he tests these items with his ECHO terrain maps. No one else does this, so he is on his own here, from both the positive and negative perspective. He did say that taking glutathione was not the way to go. He says it only raises the oxidized glutathione. He thought that it was totally logical that folapro would make things worse. I think he got a negative response on his ECHO test for D3, which precipitated this comment, which to me was surprising. He tests many items to see what works, according to his system, and proceeds accordingly.

    I think one has to look at the big picture here and try to access what he is doing and where he is going. The crux of this talk, from the treatment point of view, could be written in a paragraph. It will be of interest to me if anyone else, beside Dr. Larry Sharp, picks up on these ideas as a basis for treatment.

    In general they do not seem to be that much different from some others.

    I was most surprised about his emphasis on gut ecology. I had not heard him emphasize this before, but there it was in Saturday night's lecture. I think he must have borrowed this from de Meirleir or Dr. Guyer or someone else, which to me is a very good sign.

    I would like to know more about Artesunate and if anyone uses it.

    I would like to know more about live cell and if anyone uses it, and what their experience might be.

    I think Cheney wants to correct Oxygen toxicity with will lead to diminished viral activation. I think they are linked, so yes, he is interested in treating viruses - herpes viruses particularly. No mention was made of enteroviruses, at least that I picked up.

    Cheney said that his new websight on research would have posted all the slides of the lecture. cheneyresearch.com

    Chris


  9. SpiroSpero

    SpiroSpero New Member

    Chris you saved and made my day. Thanks a lot.

    Folapro and B6 almost killed me. Ribose was of no use for me.

    I'd really be interested in how expensive diagnosis and treatment is. 15.000 $?

  10. pluis

    pluis New Member

    "Cheney says, with this treatment, he has doubled the amount of cures, and that 75% of patients show improvement with this treatment modality: "


    Anyone know what his definition of improvemnt is in %? How many patients did he treat?

    Before using stemcells your gut needs to be repaired which is very difficult, and then you need to make a baby in order to use the cells from the biblical cord. If this is correct it sounds a bit "wild" to me!!

  11. xchocoholic

    xchocoholic New Member

    I've seen several articles from Cheney on addressing food intolerances and leaky gut. Here is an article on his protocal from 1995. I'm sure he's learned more about all of this since then though ...


    http://www.ei-resource.org/articles/chronic-fatigue-syndrome-articles/dr.-cheneys-basic-treatment-plan/


    Basic Diet Recommendations



    NO SUGAR: Due to defects in utilization, it produces toxins that cause pain, headaches and neuro-psychiatric problems. Sugar stimulates the growth of abnormal gut microflora, especially candida. It generates a tremendous amount of free radicals and raises insulin levels, both very problematic. If you crave it, try eating carbohydrates instead. If you must, eat sugar (including fruit) with meals, never alone. Some honey and powdered fructose can be used in cooking, as well as the herb stevia.



    REDUCE "BAD" FAT: Limit daily intake to less than 30 grams due to a defect in fat transport across mitochondrial membrane. Supplementation, however, of essential fats (EFA's omega 3 and 6) is necessary.



    NO NUTRI-SWEET: It contains the toxin methanol and can exacerbate neurotoxicity.



    NO RED MEAT: High in bad fat & difficult to digest, causing GI tract symptoms & systemic symptoms such as joint pain.



    NO CAFFEINE: If you can't give up the caffine, at least limit it as much as possible.



    BE CAREFUL WITH THE FOLLOWING:
    Eliminate them entirely or try two, separate, three week programs of off/on/off these foods and note if symptoms improve in the off week.



    Dairy products (can cause GI and systemic symptoms)
    Gluten (can cause GI and systemic symptoms) It's found in wheat and oats, and thus in cereal, bread and pasta. Gluten free products are available.



    ELIMINATION DIET



    The single most common antigen to which we are exposed is food proteins. If food protein is not properly digested, it's a significant inducer of immune activation in the gut, and it can maintain this disease indefinitely. Put another way, as long as you eat indiscriminately, you cannot get well with CFIDS.

    So ultimately you have to begin a process of determining the foods to which you are reacting, and eliminate them. Perhaps more important is to digest the food in the first place, which I don't think patients do very well. They then get undigested food protein coursing through the small bowel. There are permeability issues that affect the gut.

    If the gut is permeable, nothing digests completely and the undigested food particles course across the boundary into the bloodstream and get exposed to immune cells that perceive them as foreign bodies and trigger an allergic response and then you're off to the races with this disease.

    So I think a lot of attention to elimination diets, and improving digestion and gut epithelial function can pay huge dividends in this patient population. I've seen people in 30 days have huge clinical responses simply by this very simplest of moves.




    (Editorial Note: Cheney uses the ALCAT test to determine food sensitivities, most of which are temporary, and he is now using bioenergetic testing as well. This is also sometimes referred to as electrodermal testing.)



  12. xchocoholic

    xchocoholic New Member

    Here's the article where I first saw Cheney and Lapp referenced on leaky gut.

    http://www.chiroweb.com/mpacms/dc/article.php?id=35187

    If you go to the CFIDS chronicle site looking for this article, you'll see that articles this old aren't accessible immediately. You have to email them. BTW .. The CFIDS chronicle site gives a great overview of CFS research over the years ... Marcia


    "Cheney PR, Lapp CW: Entero-hepatic resuscitation in patients with chronic fatigue syndrome: A pyramid of nutritional therapy, CFIDS Chron Fall, 1993. "
  13. mrlondon

    mrlondon Member

    Chris - Did Paul Cheney say that he believes that taking Vitamin D is toxic, or did he say that "Vitamin D3" is toxic? 1,25(OH)2D3 is often referred to as Vitamin D3. so it's not clear what you mean when you mention "Vitamin D3". Thanks. - Mark
  14. consuegra

    consuegra New Member

    Cheney went quickly through a series of items that he believes are toxic to this disease. He gives these items to patients and measures them on his ECHO device, and records whether they increase or decrease energy (this takes place in a short period of times, 90 seconds to several minutes) He thus can construct a ECHO terrain map, which he finds is a remarkably consistent tool. Obviously no one else does this so there is no one else to whom to whom to compare this work. He also uses the terrain map to measure recovery from oxygen toxicity, where the patient can tolerate certain items again.

    He mentioned cytomel saying that t3 is probably the worst thing that you can give a CFS patient. He mentioned glutathione, saying in most cases this is not the way to go, d-ribose, co-Q-10, fructose and vitamin D3. In regards to vitamin D3 he essentially said this - "Vitamin D3 is toxic to this disease" because it activates p450. D3 is a potent activity of p450, which is decoupled. That is what he said according to my notes.

    Chris
  15. mrlondon

    mrlondon Member

    Chris - Yes, 1,25(OH)2D does upregulate certain P450 enzymes (like CYP24) that are used to degrade 1,25(OH)2D. But vitamin D itself doesn't do that, nor does 25(OH)D.

    And yes, certain P450 enzymes in certain locations in the body can generate Reactive Oxygen Species (ROS). But that doesn't apply to them all. In fact, in some cases, certain P450 enzymes are antioxidants. For more information about this, see:

    http://www.informapharmascience.com/doi/abs/10.1080/03602530600570040

    And while it isi true that 1,25(OH)2D has been found to generate ROS in cancer cells, the opposite is true for normal cells. See:

    http://www3.interscience.wiley.com/journal/117935673/abstract

    In normal cells, 1,25(OH)2D was protective against oxidative stress. It increased G6PD gene expression, leading to increased NADPH.

    As for testing using the ECHO device, it couldn't have been used for vitamin D supplementation, since it takes quite a while before vitamin D is metabolized by the liver into 25(OH)D, and then later converted to 1,25(OH)2D in parts of the body. Now, if he injected people with 1,25(OH)2D, THEN I can see where that might cause a fairly rapid effect. But elevated 1,25(OH)2D serum levels doesn't occur from taking vitamin D supplementation, unless you have a disorder like sarcoidosis. Indeed, taking vitamin D can sometimes actually lower 1,25(OH)2D serum levels.

    Thus, I still don't see a problem with people with CFS taking vitamin D. - Mark
  16. richvank

    richvank New Member

    Hi, Mark and the group.

    As I understand it, Dr. Cheney applies substances to the skin of patients using a transdermal gel, while monitoring the IVRT (isovolumetric relaxation time, the time between the closing of the aortic valve and the opening of the mitral valve of the heart). In the case of oxygen, I think he uses a mask to apply it. He observes changes in the IVRT within a minute or a few minutes after applying each substance. If the IVRT decreases, he interprets that to mean that the substance is beneficial, and vice versa.

    I think these are interesting measurements, but I disagree with his interpretation of them. I believe that his measurements actually reflect the rate of supply of ATP to the heart muscle fibers. When the ATP is available at a faster rate, the heart muscle can relax faster, and that allows it to fill with more blood, which decreases the diastolic dysfunction in these patients, and vice versa. In my opinion, it is not valid to conclude on the basis of the ATP response in a minute or a few minutes what the longer term effect of a substance will be, because the biochemistry can undergo many changes between the time of a minute and a treatment of a few months.

    For example, Dr. Cheney has concluded that the simultaneous application of methyl B12 and FolaPro is deleterious, on the basis of the early response of IVRT to them. However, these treatments have been found to be beneficial over longer times. What is the explanation for this? I suspect that when they are both given to a person who has a partial block in their methylation cycle, as most PWCs appear to have, based on testing so far, they give a boost to the activity of methionine synthase, which then converts homocysteine to methionine at a faster rate. That in turn probably causes more methionine to react with ATP to produce SAMe. That would lower the supply of ATP, and that is likely what causes the worsened diastolic dysfunction on the time scale of minutes.

    However, over longer times, these substances lift the methylation cycle block and restore the levels of glutathione. That in turn can be expected to lower the concentrations of reactive oxygen species in the mitochondria, and lift the partial block of aconitase in the Krebs cycle as well as the partial block in the respiratory chain. The result will be a higher rate of production of ATP, which will actually improve the function of the heart muscle and will lower the diastolic dysfunction. So the timescale over which he is measuring is very important.

    I haven't looked into the biochemistry of the other substances Dr. Cheney has tested, but I would venture to say that looking at the earliest events and their initial effects on ATP would explain the results he observes. However, the long-term effects of the substances would be another matter. I have expressed this to Dr. Cheney, but I don't think he's buying it, at least not yet! :)-)

    Best regards,

    Rich
  17. mrlondon

    mrlondon Member

    Thanks for the info. Although I'm obviously no expert on the test which Cheney is using, I'm with you in questioning how this test can forecast the long term effects of the substance which he's testing. Effects of acute administration of a substance can be totally different than long term, steady state levels. However, at least he brings up some interesting points. For example, I never realized that some P450 reactions can create ROS. He always has something interesting to say, whether we agree with him or not. :) - Mark
  18. cfsgeorge

    cfsgeorge New Member

  19. victoria

    victoria New Member