Dr. Cheney comments on a you-tube video made about his XMRV poster

Discussion in 'Fibromyalgia Main Forum' started by richvank, Sep 19, 2010.

  1. richvank

    richvank New Member

    Hi, all.

    Dr. Paul Cheney has given me permission to post his comments about a you-tube video that was made about his poster presentation at the recent XMRV Workshop at the U.S. NIH earlier this month. It's O.K. to repost these comments, so long as they are attributed to Dr. Cheney.

    Best regards,


    "A poster presentation by me made at the 1st International XMRV meetings held at the NIH in early September, 2010 was partially summarized by a U-tube video (see
    http://www.youtube.com/watch?v=gkgEQ...layer_embedded). While the video was in many respects very well done and brings needed attention to CFS and its link to XMRV, there are several errors and misrepresentations made about the poster and what it actually said or implied.

    "My biggest problem with this U-tube video was the emphasis on "heart failure" as opposed to heart dysfunction or "LV diastolic dysfunction" which predisposes to orthostatic intolerance rather than death by heart failure which is very rare in my select cohort. My poster never said heart failure was associated with CFS. However, we do know that broadly defined diastolic heart failure does not typically occur until age 72 or later so what will happen to my patients when they get into their 70's is up in the air, assuming they are not treated with things like CSF's before then. There is also the semantic question of how heart failure is defined. If it is defined by organ failure and usually death within 5 years, I don't see this and is likely very rare in the age brackets I see with CFS with an average age of 49. If it is defined by organ dysfunction including heart, GI tract, exercise intolerance, heat intolerance and brain problems etc. produced by low cardiac output then you could use the term heart failure due to diastolic dysfunction in much of my practice. Death by such a functional definition is, however, rare compared to the heart failure patients admitted to hospitals with normal ejections fractions and deemed diastolic heart failure. Such a diagnosis is very lethal over the next five years with only a third alive after five years and virtually all are quite disabled and will remain so.

    "Another problem is the "8 of 16 family members" positive for XMRV. The poster actually says 50% of healthy family controls or exposure controls (N=8) were positive. The U-tube video assumed that there were 8 positives when in fact 8 were tested and 4 were positive. 6 of 8 were healthy family members of CFS cases and 2 of 8 were CFS exposure controls and not family members. However, when we get the serology data back, I think the number of family members infected will be higher than 50% and the N value will climb well beyond 16 so this correction may soon be mute.

    "I think the U-tube video misses the very important point that the cancer rate is much higher (47%) in the non-CFS, first order family members than in the CFS cases themselves. This will be the big story going forward as to how you answer the question of why this is so. Is CFS a compensatory response to reduce serious disease and early death? I will say that Dr. Jason's assertion (or perhaps it is only the U-tube's assertion) that death occurs 25 years before they should have died is a fallacy as that number is drawn from the average age of all those who actually "died" and not a large group of CFS cases. In addition, perhaps a third of deaths occur by suicide in the young CFS cases and that will skew that number of 25 years before their time.

    "The U-tube's final assertion that XMRV is a killer is somewhat exaggerated, at least in CFS. It certainly can be a killer but the U-tube video paints the death rate as much higher than it really is in CFS. In their defense, XMRV is a killer but more-so in the non-CFS but infected cohort which I think will be much larger than CFS itself and drives many cancers to be very aggressive with much higher death rates than would otherwise occur (see Singh et al, PNAS, 2009). XMRV may also be driving the epidemic of diastolic heart failure now seen in those over 70 and most die quickly within five years once admitted to hospitals for heart failure (see Owan et al, NEJM, 2006). XMRV may well be a killer, but the paradox is that not as much a killer in CFS unless perhaps they reach age 72 or above but that is near our present human life expectancy. The most interesting question of all is how did they live that long with such a killer virus and with such severe disability comparable to heart failure?"

    Paul Cheney, M.D.
  2. gapsych

    gapsych New Member

    I absolutely agree with you. $14,000 is incredibly high especially with so many of us on disability.

    If he does not take insurance then that tells you a lot about the type of care you get. It usually means that the physician is not using approved procedures for treatment.

    Cheny is also sending people outside the country to get stem cell treatment which is very lucrative but also poses a lot of danger as medical knowledge is not advanced enough to use the stem cell therapy as a treatment for conditions. Sounds like your friend may have stumbled across one of his clinics.

    I have also heard good and bad things about him.

    Despite any help he may have given the CFS community, I think the bottom line is that he is unethical and we don't need that to tarnish the CFS community.

    My two pennies worth. Doesn't get you far nowadays, eh? :>)

    Take care.


    FYI Dr. Nicolson is not an MD.

  3. kbak

    kbak Member

    I am very disturbed that we have become nothing but Cash Cows to doctors. No not all docs, but certainly a good number of them.

  4. richvank

    richvank New Member

    Hi all.

    The you-tube video about Dr. Cheney's XMRV poster has been pulled and corrected. The new version can be found here:


    Best regards,

  5. richvank

    richvank New Member

    Hi, all.

    I understand how people feel about high charges from physicians.

    However, please note that Dr. Cheney is doing clinical research that is cutting edge. He may come up with things that will help the entire CFS community. He does give public talks from time to time, and does not charge for them. The people who go to him know what they are in for, with regard to costs.

    It is not Dr. Cheney's fault that CFS exists. No one is forced to see him. There are people of considerable financial means who develop CFS. I suggest that one way of looking at this is that the relatively rich are financing research that will likely eventually help those who are not so rich. I think that one important thing Dr. Cheney has done is to call attention to the diastolic dysfunction in CFS. He is also doing cutting edge work with stem cell treatment, and is working to try to understand the role of the retroviruses.

    Research costs money. If it's not being paid for by the government (our taxes) or insurance companies (our premiums), then it has to be paid for on a cash and carry basis by individual patients, and that's the mode of financing Dr. Cheney is using. It's not Dr. Cheney's fault that there hasn't been more government support for CFS research. It is also not his fault that the insurance companies will not fund cutting edge treatments.

    I don't agree with Dr. Cheney about everything, and I continue to have discussions with him about issues on which we disagree, but he is a very talented and motivated person, and I view him as a major asset to the CFS community.

    Best regards,

  6. Elisa

    Elisa Member


    I love and admire Dr. Cheney. He is worth every penny and more. He would be making much more $ working at any hospital or research facility. He has dedicated his life to helping us and it's hard for me to hear any criticism of him. He is truly a specialist - one of a few in the world and his compensation should reflect that.

    When no one believed we had a real illness - he was a lone voice. That I will never ever forget.

    God Bless,


  7. gapsych

    gapsych New Member

    I just do not agree with you. Why won't he take insurance? That is a big red flag in and of itself.

    How can he send patients out of the country for stem cell treatments and still keep his license?

    He may be smart. He may be dedicated. But I feel that he is unethical.

    My two pennies worth.

  8. spacee

    spacee Member

    When did Dr. Cheney stop taking insurance? It was when he got more into the
    cutting edge research.

    After he left Lake Tahoe, he took insurance. People would carpool from Florida to
    him. Also for the sum of $25 one could get the CFIDS Journal and Cheney
    would write all his recommendations which (except for the $25) you had free
    of charge.

    I, personally, would either be dead or confined to bed without his recommendations
    of Kutapressin and later Transfer Factors.

    He has been around a long time. He is getting older. His mind is brilliant. His dedication
    to finding treatments for CFS is incredible.

    You don't have to share this opinion. I would have probably felt the same way if I had
    not been helped so much. And know more about his history with CFS Patients.

    In fact, I did go to the Cheney Clinic in 1991, I was already on all the things he was
    using because of the CFIDS Journal except B-12 injections of 10,000mcgs. That
    was added to my treatment program. It was just a regular office with people in
    wheelchairs and walkers as patients.

    One can still obtain some of Dr. Cheney's treatment plan for free by visiting
    Phoenix Rising where Cheney patients post of their treatment.

    Or you can subscribe to the Cheney Newletter for 3 months and print off all
    his info. I did it when it was $50 a month. It has gone up to $79 a month for
    3 months.

    Thanks, Rich ,for this new insight to the CFS illness.

    [This Message was Edited on 09/20/2010]
  9. gapsych

    gapsych New Member

    I am not saying he is not brilliant. But I think his ethics are a bit shady. Probably more than a bit shady, IMHO.

    Forgot about this point.

    "Or you can subscribe to the Cheney Newletter for 3 months and print off all his info. I did it when it was $50 a month. It has gone up to $79 a month for 3 months."

    I am glad you were helped.

    Take care.

  10. gapsych

    gapsych New Member

    Researchers do not make a lot of money. Believe me, I know a few.

    It would be nice if people were compensated by how "good" and how "dedicated" they are but there are lots of people out there who do good work and yes even with CFS who do not make his kind of money. Whether he spends it in research or not is up to him.

    Why isn't he applying for grants or not getting them? Is it because of the type of research he does that he has to provide his own funding?

    I guess we will have to agree to disagree. :>)


  11. norris2

    norris2 New Member


    Are you serious? He gets no funding because, at least until now, there is virtually no funding for CFS ! He would be wasting all his time crafting grant proposals that have no chance instead of treating patients. There is no help for these patients. Obviously you don't have a clue about this. What are you talking about.

    I don't like the way Cheney does many things and often find him frustrating, but he is also really backed into a corner just as his patients have for decades.
  12. u&iraok

    u&iraok New Member

    The following snippet from a newsletter from Dr. Jonathan Wright might explain why Dr. Cheney doesn't take insurance. Insurance companies deem natural treatments medically unnecesary and won't pay. I'm sure that the fighting Dr. Cheney would have to do to get some of his treatments paid only to have them denied would be a nightmare. Then he has to go back to the patient and break the news to them. It's likely not just his natural treatments that are not approved or maybe the insurance companies make a decision based on the treatment as a whole and they don't approve of parts of it. And as a result he may be known to several insurance companies by now and they may react more aggressively towards his claims.

    Sorry for the format:

    'If you’ve found yourself in this
    situation, I’m sure you’ve wondered
    why you can’t use the insurance
    you’re already paying for to pay for
    visits to your natural medicine
    doctor. Or why he won’t take and
    process your insurance form.
    Basically, it’s because the doctor
    doesn’t want to risk going to jail.
    I’m not kidding. Since 1996, doctors
    working with anything other than
    conventional techniques (patent
    medicines, surgery, radiation, etc.)
    who also accept and file insurance
    claim forms have had a significant
    risk of going to jail, even though
    they’re recommending entirely legal
    treatments, such as vitamins,
    minerals, bio-identical hormones,
    herbal medicine, and homeopathy.
    So rather than take this risk, most
    natural medicine doctors have
    decided not to accept and process
    insurance claim forms.
    Here’s how it works: In 1996,
    Congress passed Public Law 104-
    191, the Health Insurance
    Portability and Accountability Act
    of 1996, which you might recognize
    by its acronym, HIPAA." [...]

    "But a little-known part of this law
    declares it fraud to give “medically
    unnecessary” testing or treatment.It also makes it a federal crime,
    overriding State authority once again.
    So guess who gets to define what’s
    medically necessary or unnecessary?
    You? Your doctor? Of course not:
    Your insurance company gets to
    decide! This law empowers private
    insurance companies to decide what
    is or isn’t a federal crime.

    Before 1996, deeming a case
    “medically unnecessary” was just a
    way for private insurers to avoid
    reimbursing enrollees. Over the years,
    I’ve seen nearly every medical testing
    procedure done in natural medicine
    labeled “medically unnecessary,”
    including, for example, tests for
    gastric acidity, food allergies, lead,
    arsenic, mercury and other heavy
    metals, and gluten-gliadin sensitivity.
    The list of treatments I’ve seen
    labeled medically unnecessary is even

  13. simonedb

    simonedb Member

    can you explain if the OI and heart issues are related to cause the symptom of oxygen hunger and the resulting desire to lie down to recover?
    What do you think are the best mainstream ways to test those problems?
  14. richvank

    richvank New Member

    Hi, simonedb.

    I can't say that for sure, but I think it is very likely. As you know, our blood delivers oxygen to our cells.

    If there is a smaller total quantity of blood (which there has been found to be in many PWCs by David Streeten et al., most likely as a result of diabetes insipidus, which is not the same as diabetes mellitus), which has also been found in many CFS patients as a result of low secretion of antidiuretic hormone, and also a lower cardiac output (rate of blood flow pumped out by the heart), which has been found in CFS patients, first by Arnold Peckerman et al., and confirmed in many patients by Dr. Cheney, then I think we should expect that the oxygen delivery to the cells will be deleteriously affected.

    I suspect that these factors also give rise to the OI in many PWCs, and that the HPA axis dysfunction that occurs in CFS probably also contributes to the OI.

    The best mainstream way to evaluate how well oxygen is getting to the cells is to get both an arterial blood gases and a venous blood gases measurement.

    The best way to evaluate OI is to measure heart rate and blood pressure while reclining, and then while standing, if the person can stand. I do not recommend the tilt table test, because I think it is brutal for many PWCs, and I don't think it's necessary to evaluate POTS or orthostatic hypotension.

    Cardiac output can be measured by impedance cardiography in the reclining and sitting or standing position, if the person can stand. Not all cardiologists have an impedance cardiograph, but it is a less expensive way to evaluate cardiac output, and it will also evaluate some other parameters, including peripheral resistance and thoracic return of the blood. It is hooked up to you sort of like an EKG, with electrodes and wires.

    The more sophisticated (and more expensive) way to evaluate cardiac output is to do echocardiography, using a Doppler technique. This is a sophisticated ultrasonic instrument, a cousing to the type of instrument they use to look at the fetus in a pregnant woman. However, this machine will also evaluate a number of heart parameters, especially if it is one of the newer machines. It will evaluate the ejection fraction, the condition of the valves, the size of the chambers and their walls, the isovolumetric relaxation time (a measure of diastolic dysfunction) and others. Dr. Cheney uses a state-of-the-art echocardiograph. He had a General Electric vivid 7, which used to be state-of-the-art, and I think he recently got a newer one.

    Best regards,

  15. simonedb

    simonedb Member

    appreciate it when you explain the science.
    I was familiar with a lot of that and did some of the tests in the past even but my current PC doc referred to my Ortho intol as reason for oxygen hunger/lie down, but I wasnt quite sure how that relates to cheneys thoughts on PVO if all part of same problem.
    The kicker of me wanting to reestablish understanding about these dynamics is for some inexplicable reason my PC guy sent me this article and totally discombobulated me as it seems to fly in the face of some of the reasons I have come up with why cbt and graded exercise doesnt work for me so not sure why he thought of me with it.....besides PEM have a trick neck documented per MRI......just dunno:
    Volume 40, Issue 13, Pages 52-53 (August 2010)
    Fibromyalgia: Tailored Tx Proved Successful


    ROME — A tailored combination of cognitive-behavioral therapy and physical exercise training has achieved the largest treatment benefit ever reported for fibromyalgia in a randomized, placebo-controlled clinical trial
    I have both fm and cfs dx, maybe fm dont have pem and he is in denial that cfs is real
    how much more real than xmrv+ can ya keep it........?????????
    [This Message was Edited on 09/23/2010]
  16. kerrilyn

    kerrilyn Member

    I don't want to derail this thread, but I can relate some personal experience towards the info you posted.

    I was dx with FM by several Rheumys because I had lot of pain. I also fit the Canadian Criteria for ME/CFS, but have not been dx with CFS. As a matter of fact, not one doc has even mentioned the illness to me. I suspect they either know nothing about it, or don't believe it in or simply don't want to deal with it. ...Scratch that, one doc mentioned CFS and said it's the disease of the 21 century also known as Adrenal Fatigue. So he is worse than the ones who say nothing because he's just spreading misinformation.

    Anyway, I participated in a program that included CBT and GET for FM patients about 8 yrs ago. When it came to the GET portion of the program, which involved walking on a treadmill, many of the group (and others from previous sessions) did seem to have less pain and improve as the course went on. I, however, got worse and I didn't understand why but I knew I wasn't exactly like the others. The PT said every once in a while there is a participant who was like me, but they didn't seem to understand what was wrong and weren't concerned either. I must simply be more deconditioned (...yeah right). I didn't understand PEM at the time, but now I know that is what I was experiencing, among other things.

    Only recently I discovered through a poor man's TTT that I have dysautonomia and POTS. No wonder the treadmill was so difficult. A couple months ago I had an 'official' TTT and I agree with Rich - it was brutal - and I didn't learn anything new from it other than a new dx of dysautonomia. I'm not going to push for a CFS dx because I don't think it will make a difference at this point.

    I can only assume that myself and others who 'failed' severely at GET had other issues like CFS or dysautonomia that Rheumys who ran the programs are not trained to recognize. But I bet they would think that the protocol of that program would work for CFS too because a lot of docs do. I'd be inclined to ignore the info that doc sent you or tell him to 'get bent'. LOL
  17. simonedb

    simonedb Member

    I appreciate your comment, it totally fits and I know what you mean.
    I am just really bummed right now, he sent me that right after I told him xmrv+
    Its really making me think xmrv did get sabotaged by the govmt newswise