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From Dr. Cheney: CFS & Stem Cells - a Warning

Discussion in 'ME/CFS Doctors' started by Sushi, Jul 19, 2009.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    From Dr. Cheney: CFS and Stem Cells - a Warning (reposted with permission)

    (Message # 127626--http://health.groups.yahoo.com/group/CFSFMExperimental/message/127626)

    by Carol Sieverling

    Paul Cheney, MD, PhD has accompanied two groups of CFS/ME patients to
    stem cells clinics in Costa Rica and Panama this year, and many more
    will be going to Panama this fall. The stem cells come from the
    afterbirth (placenta and umbilical cord) of healthy new born infants and
    are thus considered adult stem cells, not fetal. Future patients will
    also be given their own stem cells derived from belly fat in addition to
    the afterbirth stem cells.

    Though it's early yet to know the full benefit of the stem cell
    transfusions or how long such benefits will last, initial results range
    from good to spectacular. This has prompted several CFS/ME patients to
    seek out stem cell therapy on their own.

    Dr. Cheney has three concerns regarding CFS/ME patients undergoing stem
    cell therapy.

    1) Re-Boot Gene Expression with Cell Signaling Factors
    Dr. Cheney believes that better and longer lasting results will be
    obtained from stem cell therapy if patients first shift or "re-boot"
    their gene expression to a more normal genetic expression. "Gene
    expression" may not make sense to some, so here's a simple explanation.
    Individual genes are either "on" or "off". If they are off, something
    may trigger them into turning on, such as diet, environmental exposures,
    pathogens, toxins, stress, etc. Once on, its a matter of degree, like a
    dimmer switch. They can be on just a little, on moderately, or on all
    the way.

    In all chronic illnesses, the body attempts to compensate or adapt to
    the illness. Doing so shifts the gene expression. The gene expression of
    a person with CFS/ME is far from normal - it reflects the illness. The
    overall gene expression is difficult to change. Even if you address the
    underlying cause(s) of an illness, it can take months or even years for
    the body to realize the illness is gone and allow the gene expression to
    gradually shift back to normal.

    A great example of this is Dr. Cheneys own heart transplant made
    necessary by a diagnosis of idiopathic cardiomyopathy. After two years
    of increasingly severe symptoms, the underlying problem of heart failure
    was corrected surgically in a matter of hours. However, even after an
    outstandingly successful transplant, a resulting cardiac output of
    someone in their 20s, and time to recover from the surgery itself, Dr.
    Cheneys functional capacity was still very much what it had been before
    the transplant. He asked his doctors why he still felt so incapacitated.
    One doctor told him, Well, your body adapted to the reality of a
    failing heart in order to survive and now that your heart is fixed, it
    will take a year or two for your body to re-adapt back to the reality of
    your new heart.

    In other words, all chronic illness always has two problems to solve:
    the problem at the core of the illness and the adaptation the body makes
    to survive. The first can sometimes be fixed very quickly (hours to
    weeks) but the latter takes time. There is no hours to weeks fix to
    the second problem of adaptation because it becomes programmed into
    ones gene expression, also known as phenotype.

    Since his surgery and adaptive cure from heart failure, Dr. Cheney has
    found that certain low molecular weight peptides called Cell Signaling
    Factors (CSF's) have the ability to more quickly shift gene expression
    towards normal as measured by echocardiography. CSFs can often improve
    function within 90 days, though tests results show progress well before
    the patient actually experiences it. For instance, measurements of
    cardiac diastolic function typically improve months before patients
    report feeling better and doing more. There is also the problem of
    genotype corruption which can only be addressed by stem cells.

    Over the last three or four years he has determined which CSFs are most
    beneficial to CFS/ME patients. He does not order them from a company,
    but has arranged for his own private production of heart, pancreas,
    liver and kidney from the respective organs of bison. The brain CSF,
    also privately produced, is of porcine (pig) origin. The CSF's are in a
    cream-like form and are typically rubbed into the forearms three times
    per week to daily.

    The use of bison as the primary source for the CSF's stems from several
    factors. Bison are incredibly aerobic animals with vast aerobic
    energetic potential. They are significantly more organic than virtually
    any other meat source. Finally, they are only one of two known animals
    who never get cancer, the other being shark. They also live three to
    four times longer than beef cattle and they do not have "mad-cow"
    disease, though skin cream makes this a non-issue. Finally, bison CSFs
    are 50-100% more potent than comparable porcine or bovine CSFs, as
    measured on echo.

    Dr. Cheney uses adrenal and thymus CSF's for testing purposes only -
    never for treatment. CFS/ME patients respond very negatively to them,
    usually with a major drop in energy on echo. Adrenal and thymus CSF's
    should never be taken by CFS/ME patients. Porcine Liver also has a very
    negative effect in CFS patients and should not be used either for therapy.

    Dr. Cheney is the only source of CSF's made from bison because at this
    time he feels that they need to be used only under the care of a medical
    professional familiar with their use. For this reason, he only sells
    them to his own patients. He plans to also sell them to a few other
    physicians who are currently learning about their use, how to
    incorporate appropriate pretreatments, and how to individualize the CSF
    protocol for their patients. Information about the physicians who have
    access to the CSFs and know how to use them will soon be posted on the
    Cheney Clinic web site (cheneyclinic.com).

    There is anecdotal evidence that the use of CSF's can significantly
    improve the benefits of stem cells. An 80-year-old man with Parkinson's
    Disease as well as Coronary Artery Heart Disease (history of two heart
    attacks) was part of the group that received four consecutive daily
    transfusions totaling 45 million stem cells the last week of May. (He
    does not have CFS/ME but is related to one of the CFS/ME patients.) Hed
    been using four of the CSF's for 18 months. While still in Panama
    receiving the stem cells, the tremors began disappearing and he was able
    to hold a fork and eat peas for the first time in two years.

    One week after his last transfusion, an echo revealed that an area of
    his left ventricle (a chamber of the heart) that prior to the stem cell
    transfusions was dead and not moving, was now alive and moving. At that
    time he also had much less hand tremor, was walking more upright with
    much less shuffle and swinging his legs much better when he walked. He
    threw away his cane. The allergic bags under his eyes disappeared. He
    looks, acts and talks as if he were 10 years younger. His face is pink
    now rather than pale and gray. He is more alert and doesn't slur his
    words. He feels much better and has much less foot edema. He even went
    back to work part-time.

    The doctors at the Stem Cell Institute, who are familiar with
    Parkinson's cases, were astonished at the degree of benefit he
    experienced, and so quickly. They are very intrigued by the potential of
    CSFs to increase the benefits of stem cells.

    Three studies* of patients who received stem cell transplants in the
    90s revealed that despite initial success, about ten years later the
    stem cells had been corrupted and the patients disease returned. Though
    the stem cells worked as expected and lasted 10 years, they were
    eventually corrupted by the same disease process that damaged the very
    cells they were replacing.

    Dr. Cheney believes that CSFs are necessary both before and after the
    transfusions to increase both effectiveness and durability of the stem
    cells. According to Dr. Cheney, Putting stem cells into a corrupted
    environment will eventually corrupt the stem cells and blunt their
    otherwise potentially impressive benefits. To use another of Dr.
    Cheneys analogies, if you correct the software problem first (shift
    phenotype with CSFs) and then address the hardware issue (shift
    genotype with stem cells), youll get much better results. You dont
    expose a new hard drive to corrupted software programs, or the system
    will crash again! This is why he recommends that his patients continue
    to use the CSFs even after the stem cell transfusions. Doing so is
    designed to prevent the gene expression from shifting back to the
    configuration of the original illness and corrupting the stem cells.

    2) Care must be given to a corrupted gut ecology before receiving stem
    cells.
    Recent publications, especially by Kenny DeMeirleir out of Belgium, as
    well as others, suggest that corrupted gut ecology is playing a very
    large role in a subset of the sickest CFS/ME patients. This corruption
    must be addressed or it may thwart the effects of stem cells or degrade
    their benefits over time. The gut ecology must be measured by
    appropriate tests (such as the GI [2] panel from Diagnos-Techs,
    diagnostechs.com) and an integrated effort made to reduce the effects of
    this corrupted gut ecology on CFS/ME physiology. Stem cells can help
    attack the root causes of this corruption but the gut corruption and its
    consequences need to be minimized ahead of the stem cell transfusions.
    The core approach to improving the gut ecology is a modified elimination
    diet, copious use of digestive enzymes, immune support using bovine
    derived antibodies and immune factors (colostrum) and the judicious and
    careful use of probiotics with special attention to support of commensal
    E.Coli (a beneficial form of E.Coli marketed as Mutaflor).

    3) Go to a high quality stem cell clinic affiliated with a US company.
    Dr. Cheneys third concern is the quality of the stem cell laboratory
    and clinic doing the stem cell transfusions. Dr. Cheney chose MediStem,
    Inc (medisteminc.com), only after careful research and consideration of
    quality control issues. Medistem Inc. is a US-based company that assists
    in the operation of two clinics in Central America (cellmedicine.com)
    because those locations allow them to offer the treatment at a quarter
    of the cost of the same treatment in a clinic in the United States.

    Dr. Cheney met with Neil Riordan PhD, the laboratory director and CEO of
    both clinics, and toured their facilities in Costa Rica and Panama
    before taking patients there. The clinic in Panama is located near, and
    its doctors associated with, the newest and best hospital in that
    country. The Punta Pacifica Hospital (hospitalpuntapacifica.com) is
    located in downtown Panama City and is professionally tied to the
    Johns-Hopkins University Medical Center. There is, however, no direct
    association of the stem cell clinic to Johns-Hopkins.

    The clinic stem cell laboratory, which produces the afterbirth derived
    stem cells used in treatment, is located in The City of Knowledge in the
    former US Canal Zone. Before a company can be established in this
    prestigious high technology development site, a thorough vetting process
    and due diligence approval from the Panamanian government is required.
    The fact that the laboratory is located here signifies its high
    standards and excellent quality control.

    Touring a stem cell clinic and meeting its clinical staff is not the way
    to judge the level of treatment one will receive. The key to evaluating
    the quality of stem cells used and the effectiveness of the treatment
    received is to be found in the laboratory and its quality control
    operations, as well as the expertise of the laboratory personnel. Bear
    in mind that the laboratory and the clinic may be located in separate
    buildings, perhaps even very separate areas of a city.

    There are serious concerns about stem cell clinics operating in Mexico
    and elsewhere. There are many bad actors and poor actors. Some actually
    transfuse patients with saline and claim that its stem cells. Others
    have no quality control and do not test the viability of their stem
    cells, which means they may have little power to effect healing. Poor
    quality control could also lead to lack of sterile procedures and at
    worst patients could end up with no stem cells and an infection!

    Dr. Cheney strongly recommends that clinics and their laboratories in
    Mexico and elsewhere be carefully scrutinized, especially their quality
    control procedures, personnel and capitalization. Good stem cell
    laboratories require millions of dollars to capitalize and cost over a
    hundred thousand dollars per month to run just for laboratory expenses.
    They require deep pockets and a decade or more of expertise in the area
    of quality stem cell production and propagation from afterbirth.
    Significant capitalization acts to ensure quality control to protect the
    investment of millions of dollars.

    Adult stem cell therapy holds immense hope and possibilities for CFS/ME,
    but requires a significant investment. Prospective patients should
    consider such a major investment very carefully and make decisions that
    ensure the safest, most effective, and longest lasting treatment possible.

    For more information about the Cheney Clinic and Dr. Cheneys research,
    see cheneyclinic.com and cheneyresearch.com


    * Kordower JH et al. Mov Disord 2008 Dec 15; 23:2303
    Nat Med 2008; 14:501 and 504 (two separate articles)

    *************

    [This article is available as Word document. Email dfwcfids58@...
    for a copy.]

    Please distribute to other groups, lists and organizations.
     
  2. LaurelB

    LaurelB Senior Member

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    Thanks for posting this. Fascinating stuff. I wonder how those of us most severely afflicted (ie, bedbound) could get access to these CSF's if only Cheney (and perhaps soon a select few doctors) are using them. And of course, flying to Panama would be an impossibility. I hope these treatments soon become more readily availabe in the U.S.

    I wonder if any of Cheney's patients who have received these treamtents have posted anywhere on the results they had?
     
  3. Angel

    Angel

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    an island in Florida
    Stem Cells

    I have received treatment at an IV clinic where several patients have gone to Costa Rica for adult stem cell treatment. In the weeks and months following their stem cell injections I could see their health improve.
    Your chronic illness decides whether the stem cells are from donor cord cells or from your own body fat.
    One lady in her 70's was able to greatly reduce her insulin. A man with kidney failure was experiencing his kidney getting well again. His Doctor just couldn't understand it since he had never seen a kidney in failure get better. He wisely kept the reason to himself.
    A woman with FMS had an increase in strength and her ability to exercise with a decrease in pain. All others I visited with reported excellent results. Some returned 6 months later for another treatment. One man who with his wife went in a wheelchair, on the trip home was pushing his wife in a wheelchair instead of riding in one.
    I wonder what the cost of the treatment is with Dr Cheney. Of course the cost is the only thing that is holding me back. I would go in a heart beat and I believe that my health would greatly improve from the adult stem cells.
    It is that old catch 22... When you have ME/CFS you cannot work, and all of your income goes to supplements and alternative therapies that do help you regain health, but are not covered by insurance because they are not chemical drugs. (don't get me started!) What works, we cannot have.
    I always said I wouldn't marry for money, only for love, but maybe I'd consider marrying for an adult stem cell treatment!!! Just kidding...
    ...or am I?
    Blessings,
     
  4. SDD1244

    SDD1244 Guest

    I bet they could also use peripheral stem cells from donors. They would just need to give the donors Filgrastim to boost their white cell count (and stem cells). I wonder why they are doing this in other countries and not doing any research on this in the U.S. ?
     
  5. kitonthemoon

    kitonthemoon

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    Californiz
    Thank you for posting this fascinating news.
    :D
     
  6. Cort

    Cort Phoenix Rising Founder

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    Cheney, Cheney, Cheney

    I just don't what to think about Paul Cheney. I saw him for a time, went bankrupt, (it didn't take long) and of course never saw him again. Some of his talks have egregious errors in them - errors you wouldn't think someone of his stature would make - yet he is so creative. Some of this theories seem almost space agey to me. Sometimes when I saw him I thought he was great other times decidedly not so.

    It is indeed unfortunate that the treatment he's come upon costs well over $10,000. I just hope that our most creative clinician will rigorously document what's happening to those patients. I would bet that some of them would get better - but there won't be many cures. Hopefully I'll be wrong.
     
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  7. Jody

    Jody Senior Member

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    Cort,

    I have never met Dr. Cheney but I have similar feelings to yours about his theories. Some sounds really really good, amazing. And other stuff worries me.

    The closest I ever came to having contact with him, was a few years ago when I was at the end of my rope about my mystery disease and what to do about it.

    I'd sent an email that would supposedly go to him, from a website about his stuff.

    I never heard anything back. I guess it was an old site or email or ... something. If it doesn't function it would be a good idea to get it off the net.

    As it turns out he is probably (no, he is most certainly way out of my financial league).
     
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  8. LaurelB

    LaurelB Senior Member

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    Cheney's lectures always fascinate me -- he is definitely passionate and creative about this. :)

    I often wonder, though, why it is Cheney no longer does formal studies in order to publish his work in peer reviewed journals? It seems it would be of such an enormous benefit to the CFS community as a whole (rather than just his patients) to have all his findings (PFO's, oxygen toxicity, diastolic dysfunction etc) verified and proven in the scientific journals. There's the Peckerman study, but for some reason that hardly gets cited any more. Just seems like it would help raise crediblity of the seriousness of CFS if some of this could be published and more widely documented.

    As for the stem cells, I suppose it'd be quite costly to do a formal study with that, especially with the $10,000 fee per patient, factoring in controls, etc.

    Anyway, I guess time will tell.
     
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  9. Cort

    Cort Phoenix Rising Founder

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    It would raise it TREMENDOUSLY. He could VERY EASILY at least put his theory down in the Journal of Medical Theories or whatever it's called. Marian Lemle is a laymen and she got here hydrogen sulfide theory published there.

    It is a pet peeve of mine that's for sure. Getting published is the way to get accepted in the mainstream community - there's no other way.

    I think he will though. He is one of the founders of the Fatigue Journal. Maybe he couldn't get accepted elsewhere? If that's the case the best thing to do is start your own Journal - which he and other ME/CFS researchers have now done. We should definitely be seeing some papers in the future.
     
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  10. jam338

    jam338

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    Dr.Cheney

    Hello to all, I am new to this board but have posted for awhile on ProHealth & LymeNet. Mostly too sick these days to read or post much. Been bedridden for much of the past 4 yrs (thank God for a laptop).

    On Dr. Cheney, like Cort, I just don't know what to think anymore. When I was more able I researched online obsessively looking for Cheney protocols as I was certain he likely had more pieces of this DD than anyone. Maybe he does. Who knows?

    I ordered the DVDs of his lectures and painstakingly listened to them taking extensive notes....lots of backing up and replaying to get it right. His talks are always 3 hrs in length so it is a huge undertaking. All that said, as a layperson, I understand very little of what he says, but did learn a lot.

    Dr. Cheney's protocols have been evolving processes through the years. For awhile I had appreciation of any doctor willing to say I think I had it wrong and now believe this other thing. But, I am really struggling now about Dr. Cheney after reports from his recent (May 2009) talk in Virginia. Reportedly, he says VitD, glutathione, COQ10, D-Ribose, and FolaPro are bad for us. If I am not mistaken (and I could be because my cognitive & memory problems are substantial)....didn't he previously say COQ10 was not only good, but essential to this DD??? I think that was in the 2006 DVD, maybe 2005. Sorry, I don't have access to any of my notes; am displaced from my house (mold remediation).

    About a year ago I signed up for the extensively long Cheney wait-list. At that time I was told the first visit would involve substantial testing and to estimate $6,000-$9,000 (I figured that meant $10,000). And, I was told it is a pre-requisite for patients to agree to at least 1-2 visits annually that would involve testing rechecks, but wasn't given an estimated costs for those. I was too stunned to think to ask more.

    It is important to remember that Dr. Cheney is also a PhD researcher, in addition to medical doctor, so he does lots of testing which generates the data used in his talks/theories, etc....paid for by patients, most of which is not insurance compensable from what others have said.

    I am now too sick to ever travel to see him, nor can I afford it, especially not after remediating mold in my house. I have much to share with others about that and how mold sickness can contribute/cause similar symptoms to this DD. Every one should know that. I wrongly thought posts on Prohealth on mold warnings were by mold eccentrics. Boy was I wrong. I was clueless mold was a factor in my sickness. No visible sign of it anywhere in my house. Air testing revealed it. When the walls were opened up (sheetrock removed), omg.....full of mold from plumbing leaks that we didn't even know existed. Sorry, I'll stop for now and rest before I inadvertently hijack this thread on mold, but will post separately on it if I can figure out how to navigate the board. Learning new boards is so hard for me with my brain problem.

    I am glad to have found this board. Cort thank you for all that you do to provide us with a forum to share information and experiences to help each other find our peculiar pieces to this mystery puzzle of an illness. Bless your heart for your compassionate caring and contributions to help us. It is particularly a blessing to those of us who are bedridden and have become so isolated from the world and normalcy. I have forgot what normal is.

    Oh, on the stem cell therapy, some lyme patients have traveled to India and are reporting some success with it, but costs there seem to around $50,000....so, $10,000 would be a bargain if one had the resources. A couple of patients had blogs on it but I can't remember their names...one was Amy Scher. Since her name is posted publicly on her blog it should be ok to say it here. For those interested in it, you can read about it at: http://healthcarehacks.com/another-lyme-disease-patients-embryonic-stem-cell-experience. Hope posting this isn't violating any rules, if so please politely tell me and I will kindly remove. Just trying to share resourece learning info. Definitely not advocating for or against as I know little about it.
     
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  11. Jody

    Jody Senior Member

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    Hi jam,

    Welcome to the forums.

    I appreciate your posting, knowing how exhausting it is for you to do so. What you've had to say is very interesting, and valuable. I hope for all of us that you will be able to post again in future. If not, we certainly understand. :) You must take care of yourself as best you can.

    I couldn't agree more with what you've said about Cort. He has done a tremendous thing here. His care and concern for us all is quite clear. :)

    But of course it is having you all here posting your thoughts and experiences that make this place valuable. It is great to see so much involvement and interest.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi all,

    Joining the Cheney discussion, but without any personal experience....

    There is an interesting discussion between Dr. Cheney and Dr. Rich Van Konynenburg (they have ongoing dialogue) on the methods of measuring the effect of individual nutrients on the body. Dr. Cheney seems to (currently) base his recommendations on his sophisticated echocardiogram measurements. Rich has questions about the interpretation of these tests.

    I was going to insert a link to a post that Rich gave explaining these differing opinions, but I see that this post has been deleted from the forum it was posted on. I saved it as a doc, however, so I'll just paste in the relevant paragraphs posted on April 28, 09. Rich is fine with people reposting his posts:

    "There are certain parameters that one can measure using an echocardiograph machine (which is basically an ultrasonic or sound wave type of machine that is used to study the size and shape of parts of the heart and their motion during the heartbeat) that will tell you how bad the diastolic dysfunction is. One of these is a relaxation time called the IVRT. This is what Dr. Cheney focuses a lot of his attention on. He observes the heart of a patient using the echocardiograph machine, and he can measure the IVRT value as it changes over time, depending on various things he gives the patient.

    Dr. Cheney likes to make up his own jargon to describe what he does, and the term he uses for these IVRT measurements is the "Echo terrain map." The word "terrain" goes back to arguments that the early biomedical researchers like Pasteur used to have. Some emphasized the importance of the bacteria, and others emphasized the importance of the condition of the body, which they called the "terrain." I think this actually goes back to military terminology, in which battles are fought on terrain, and in the body there is a battle between the bacteria and the immune system.

    What Dr. Cheney does is to measure the IVRT repeatedly while he gives the patients various substances. Most of them are given by putting them on the skin in a gel, i.e. transdermally. He gives oxygen with a breathing mask. He observes the change in IVRT within a few seconds or minutes after he applies these various substances. He refers to changes in the IVRT as "energy response." When the IVRT value worsens, he refers to it as "backflash."

    Now here's one of the places where he and I part company. He believes that if the IVRT value improves, showing less diastolic dysfunction a short time after he gives a certain substance, that that substance is beneficial for the patient. On the other hand, if the diastolic dysfunction becomes worse shortly after applying the substance, he concludes that that substance is bad for the patient. I might mention here that as far as I know, he is the only one doing this and interpreting it this way, and that this is unproven. It is very innovative, and I do think it's meaningful if interpreted properly, but I'm not convinced that his way of interpreting these changes is correct, because of the short times involved. Something that might look harmful in the short term may turn out to be beneficial in the longer term, and vice versa, in my opinion, because so many things in the biochemistry change over the course of time. The body is a very complex biochemical system. So when he says something is good or bad for patients, bear in mind that it is based on this unproven interpretation. But anyway, back to Dr. Cheney's talk:

    One thing that Dr. Cheney has found is that when he gives oxygen to his CFS patients, the diastolic dysfunction becomes worse over the short term. As a result, he says the patients are "oxygen toxic" or "toxic to oxygen." This response is different from what he sees when he tests healthy people. He concludes that CFS patients have a problem with "oxygen handling."
    I don't think he is totally clear on how to interpret this observation. At various times he has invoked a left shift of the hemoglobin oxygen absorption curve in the red blood cells, but it has not been clear to me that this makes sense. Apparently in this talk he suggested that damage to red blood cells is involved. I don't know of any evidence for this.

    I don't think Dr. Cheney has a clear explanation from a biochemical standpoint for why the mitochondria are not able to produce ATP at a high enough rate to sustain normal cardiac output. I think his view is that something like a virus has disrupted the antioxidant enzymes, so that there is a condition of oxidative stress, and this is limiting the ability of the mitochondria to produce ATP at a normal rate.

    I think he believes that once this has occurred, the body does various things to compensate for this problem in order to keep the person alive. He believes that the symptoms of CFS result from this adaptation.
    "

    Sushi
     
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