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Cheney's Latest Newsletter

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Oct 3, 2010.

  1. Berthe

    Berthe Senior Member

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    But this part really troubles me.

    He's suggesting here not that studies should be done on drugs to address this illness because we need to find out whether they work, but because patients are trying them as a result of anecdotes on Internet blogs.

    He furthermore suggests that the people who are writing the blogs are perhaps just experiencing "spontaneous improvements" and thus misleading others.

    His final point is that we don't know the long-run implications of these drugs.


    I have to agree with slayadragon. I actually can't seem to figure out why some highly intelligent scientists with their expertise in this field as Dr. Cheney and Dr. De Meirleir, advice against the use of antiretrovirals. Why? Well they obviously make a lot of money with their self-invented therapies that seem to help some of their patients. Call me suspicious. It's perhaps another symptom of my declining brain.
    The fact remains that asking 1300 dollar for a phoneconversation is not ethic at all. Ask Immanuel Kant! He would agree.

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
     
  2. Frank

    Frank Senior Member

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    Consultation price is voor KDM is very reasonable! Testing is expensive but that's not his fault. I agree on Cheny dough.
     
  3. kess3881

    kess3881

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    yeah let's charge desperate people who can't work 10k for a visit and 4-6k for each follow up AND.... 600 dollars to call him for a few minutes: VERY insulting to say the least. The website that he updates every 5 months should be free, but people are greedy and that's just the way it goes. One can say it's for research but I'm not buying that - literally - I doubt anyone else is too, unless they're rationalizing. Im good, i'll get other treatments that don't work for 1/100th of the cost. (why would arv's work when I can make more money on supplements and b.s. theories on cfs) ... lame
     
  4. Nielk

    Nielk

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    I have no personal experience with Dr. Cheney, but I am incensed with what I've been reading from all of you.
    Anyone in the medical field who is so money driven is totally unethical!!!!!!!!!!!!!!!!

    In addition, if he is really so brilliant and driven, why has he not come up yet after so many years with a clear cut answer to the cause and cure for this
    disease that is leaving me bedridden and unable to function?

    I understand that he can charge what he wants as long as there are patients who are willing and able to pay for it but that doesn't make it ethical. he is preying on
    desperate people who would do anything for a possible chance that they'll get positive results.

    Have patients been cured by him? If yes, please let me know. I have tried everything (that I know of) so far with not much of a result. This has been going on for the past seven years,
    and I have had it. Seriously, I don't know how much longer I can deal with this.

    For him to dangle a reward only if you are financially a millionaire is despicable.
     
  5. calzy

    calzy Senior Member

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    :victory:Bravo Lisa!!
     
  6. calzy

    calzy Senior Member

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    Its called DESPERATION.......its the pay for website that upsets me.
     
  7. Otis

    Otis SeƱor Mumbler

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    Clap, clap, clap

    Lisa, I'd give you a standing ovation but I'm in bed. :)
     
  8. liverock

    liverock Senior Member

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    But it does wonders for Buffalos. I've never heard of a Buffalo with CFS. :D :Retro tongue:
     
  9. jenbooks

    jenbooks Guest

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    He's a strange guy, all around. But his stem cell work has meant a lot to me and if I do it someday it will be in part because he pioneered taking patients there, and has taken time to evaluate it. His "N" is so small though, I wouldn't necessarily say those over 50 or 60 can't recover well. It may be that since he has the sickest patients, those over 50 or 60 may have had less ability to fight off the disease process and they may be overall more debilitated with more organ system damage. I'd still wonder how several treatments over a year or two might help them.

    Re: antiretrovirals, I don't agree with all of you. I think caution is paramount. It's a different disease than HIV. Mitochondrial damage is a concern. I've posted on Jamie's blog that I think a very sick patient, who is in a suicidal or extremely desperate state, with no quality of life, should have access to the drugs thru a compassionate doctor if that doctor evaluates their medical history and feels they are a qualified candidate.

    I disagree with Jamie that there is virtually no risk to the drugs since you can go off. CFS has not just exacerbations, but sometimes an input will crash a person down permanently and they don't seem to recover. That can include drug damage.

    If you're not severely ill, waiting is so important.

    Ampligen, otoh, has a track record in CFS and everybody should focus on getting that fast tracked for approval and coverage. That's my belief.

    Anyway, Jamie's latest blog notes dips and plateaus, and that they are still sick. Glad they did the drugs (for now) but still sick. And its clear their complex protocol, that every part of it must be exacting including the supplements and the hormones, and if one single one is altered, they start to crash. It's extremely complex so saying ARVs should be taken is really just far too simplistic.

    Everybody has their own perspective, and I'm in agreement with Cheney, and generally with the scientific process, before anybody but the sickest experiment.
     
  10. mojoey

    mojoey Senior Member

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    From what I understand, Cheney is not a fan of ampligen because of the risk profile, but it seems no one knows the whole story. It is very telling that he and Peterson were both involved in the early trials with ampligen, yet Peterson is still using it with a sizeable group of patients and for the most part, obtaining good results.

    My personal opinion is that Cheney has become much more of a terrain-theory guy than a germ-theory guy. He claims to mesh the two together, but it's much easier said than done when most drugs have a litany of side effects. Also, artesunate to attack-based germ therapy is like a ripple to a tsunami. I still find it incredible that people are taking his recommendation of artesunate as monotherapy antiviral seriously when both artesunate and wormwood has been used in lyme and CFS protocols long before he suggested it without producing a single cure that I know of. The problem is that his terrain theory hasn't panned out in more than a handful of functional recoveries, and this is not to take away from the cornucopia of intellectual and scientific contributions he has given us throughout the years.

    It's tempting to cave into the groupthink here (regarding Cheney's level of greed) but I'm gonna go out on a limb and say the main issue here might not be the money he charges but rather his ideological insistence on preserving optimal terrain, or redox state, at all costs. It wouldn't matter if all that information were free if it ends up brainwashing patients into thinking gcmaf is going to suffice as sufficient monotherapy for XMRV (that's what he suggests and it's simply not true)
     
  11. Navid

    Navid Senior Member

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    i'm going to go on out on a huge limb here...it is about the money, a business model that soon may be obsolete and ego (normal human ego).

    for years most of the best and brightest docs have decided NOT to study CFID's because there was no money, support, prestige or recognition in it. the docs that stayed with cfid's were either snake oil salesmen, terrain theory or viral theory believers. those who stayed committed to the field became experts in the limited sphere of what they could discover given their resources and knowledge base. they became folk heroes to cfid's patients because they were the only ones who would take our disease and us seriously.

    the ground is quickly shifitng, the business models that these docs set-up and made their livings on will soon no longer be viable. there will be insurance covered tests and treatments. docs who want to stay in the cfids business will need to change the way they do business.

    i think cheney is a smart dedicated man, who also needs to feed his family and keep his income flowing. when the ground shift is complete in this disease his business model will no longer be viable.

    most of these cfid's docs are in their 60's...they are tired and ready for retirement, so maybe it's time for the perfect storm to hit: regular docs within our hmo's and insurance plans will be able to test us for the RV, prescribe the appropriate drugs and help us to recover our health without it costing us all of our family's savings.

    the times they are a changin and everyone wants to find their own foothold in the money mountain.

    the newsletter is just one of cheney's footholds.
     
  12. richvank

    richvank Senior Member

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    Hi, all.

    I don't consider myself a Paul Cheney apologist, and those of you who are familiar with Dr. Cheney's comments in the Q&A session at his talk in Virginia some time ago, and with some of my posts, will know that he and I have strong disagreements on some issues.

    I understand the feelings people have about his fees, especially when they are far above what many people with CFS could afford, if they wanted to see him.

    I just want to point out that Dr. Cheney has made what I consider to be some important contributions to the CFS community over the years, and that he is still doing so. He is certainly not always right, and he has certainly changed some of his recommendations over the years.

    He, along with Dan Peterson, called attention to CFS in the mid-80s and helped to get national attention to it. He is not responsible for any errors made by the CDC in their response.

    He was involved in the search for viruses and retroviruses early on, supporting the work of Elaine deFreitas. He has never stopped believing in viral involvement in the Incline Village outbreak.

    Together with Charles Lapp, he pioneered the use of high-dose B12 in treating CFS. This is now a component of the methylation cycle treatments, which, though they are not the whole story for treatment, are helping quite a few PWCs.

    He was one of the first, beside Dr. Sarah Myhill, to recognize the importance of mitochondrial dysfunction in CFS, and of oxidative stress and the redox potential.

    He was the one who publicized glutathione depletion in his patients in 1999 (which, by the way, is what drew my attention to glutathione, which eventually helped lead to the recognition of the methylation cycle partial block in CFS).

    He was the one who recognized the importance of Arnold Peckerman's work on low cardiac output, and who went on to document diastolic dysfunction and patent foramen ovale in his patients.

    He has identified some unusual features in CFS that others have missed, such as the loss of fingerprints, the crimson crescents in the throat, and the failure of the oxygen % saturation to drop on breath holding.

    He has identified supplements that are helpful in treating CFS. It's true that he has changed some of his recommendations, and I don't agree with all of his current ones, but nevertheless, he has drawn our attention to many that have been helpful.

    He has pioneered use of stem cell treatments in CFS. This is a cutting edge treatment, and it remains to be seen how it will work out in the long run. But he has had the courage to try it.

    He is actively involved in helping to figure out the involvement of the newly discovered retroviruses in CFS and how they should be treated.

    I'm sure that I've forgotten many other contributions that Dr. Cheney has made, which have ended up helping the CFS community at large, not just those patients who have been able to support his work financially.
    And also, please note that over the years Dr. Cheney has given many free lectures on what he has learned.

    Best regards,

    Rich
     
  13. Sing

    Sing Senior Member

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    Rich, thanks for a great post! After seeing the seminar yesterday which the CAA put on, I now have a better understanding of what you, and Cheney, have meant about oxidative stress, mitochondrial dysfunction, etc. I needed to have more of the pieces pulled together in order for me to understand.

    I have felt for a while that Cheney would be my doctor of choice if I could pay his fees; however, I am appreciative, very appreciative, to have people like you share and explain a lot of what he has been contributing to the understanding and treatment of ME/CFS. He is a smart dude!
     
  14. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Rich, thanks for your note. It's reminded me that I need to point out that my criticisms of Dr. Cheney are limited to one particular issue, and that they do not detract from my general admiration and appreciation of him.

    Dr. Cheney is, in my mind, a true scholar. The observations that he has made about the phenomena that occur in this disease and the theoretical models that he has developed are, in my view, extremely perceptive and insightful. This is a complex disease, and the work that he has done will provide those who try to address it in the future to do so with a much stronger foundation upon which to build.

    Dr. Cheney also has shown a huge amount of dedication to patients suffering from this disease. As a community, we are very lucky that he stumbled into the phenomenon and decided to devote his life to it.

    My only issue is with his comment suggesting that individuals who are sharing their treatment details on the Internet may be misleading people.

    I strongly believe that ME/CFS patients should have as much information of all sorts as they can get about this disease. Since there is no approved effective treatment, we need as much information as we can get if we're to have any hope of getting better.

    I am mostly well now. But I'd never have gotten to this point if it weren't for people talking about possible treatments on the Internet.

    I never would have learned about the mold-CFS connection if Erik Johnson hadn't brought it up on the Internet. (Dr. Cheney didn't pursue the topic until two months ago, even though Erik told him about it personally in 1984.)

    I never would have learned about the importance of methylation issues in my illness if Rich hadn't brought it up on the Internet. (Dr. Cheney clearly understands that methylation issues are problematic in CFS, but because he took the position that - like mold reactivity - they were an effect rather than a cause of the disease, he didn't bring them up with anyone until people started asking him as a result of talking to Rich about them.)

    I never would have concluded that Valcyte (in conjunction with other things I was doing) might have promise for me if I hadn't talked directly to an individual (a physician, Gary/gasolo, on ProHealth) who had benefited from it and gave me a specific description of his experience. (Dr. Cheney concluded that Valcyte had no promise for anyone who had been sick for a long time.)

    I don't expect one doctor to be able to give me all the information that I need in order to get better. This is a tough disease. For someone to contribute even a tiny bit toward my understanding of the disease is something for which I am profoundly grateful.

    I am profoundly grateful to Dr. Cheney.

    I object only to his implication that people who are experiencing improvements as a result of using antiretrovirals should not be sharing that information freely.

    If other individuals (Erik, Rich, Gary) had not shared information freely on the Internet, I'd still be in a dark room, curled in a ball, wanting to die.

    Maybe not dead yet, but close enough.

    Best, Lisa
     
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Ditto, I'm not in bed though.
     
  17. xrayspex

    xrayspex Senior Member

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    Hey this page on this thread pulled it all together for me as i have so many mixed feelings on Dr C, I learned so much from him over the 2 days we talked but I am bummed how much it cost me, I need to save the dough i have for the future (unless get cured)
    but many good points thanks all

    and Rich, off topic here, but could you explain more about the crimson crescents in the throat? thats anew one to me, anyone?
     
  18. Hi,

    In his current newsletter, Dr Cheney mentions Noble Prize winner Professor Luc Montagnier and that he believes that "water is key." Meaning our immune systems can fight anything, including HIV (and infering XMRV) if it is properly nourished (and there is no prexisting immune deficit). Here is a youtube video of Professor Luc Montagnier:

    http://www.youtube.com/watch?v=WQoNW7lOnT4

    http://www.youtube.com/watch?v=X_N4zgjF0K0

    So I am wondering if he is saying that CFS and or XMRV is only possible with an immune defect?

    Elisabeth
     
  19. slayadragon

    slayadragon Senior Member

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    Isn't that something!

    That's a really great find, Elisabeth.

    Best, Lisa
     
  20. mojoey

    mojoey Senior Member

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    This is more of the terrain theory mumbo jumbo I was talking about. He is basically suggesting that poor africans can reverse their HIV by drinking clean water and using it to corroborate the logic behind his previous recommendation of structural waters. I don't care if Luc Montagnier the co-discoverer of HIV said it. He offered no clinical data in that interview to support his theory, so at this point it's just a theory, and a theory that stretches common sense at that.

    See once again, he is making no money off of icelandic water, and he needs no patients to come see him to maintain a good diet and drink good water. And once again, I'm more worried about Cheney getting so swept away by one particular paradigm that he ends up giving what I consider dangerously nonsensical ideas to desperate patients, more than I'm worried about his capitalistic greed or preservation of his business model.

    I just wanted to point out: if Cheney truly wanted to leech as much money as he could off us, he would just sell his magic buffalo cream commercially. Just about every CFS patient knows about them by now, so the bulk of the marketing is already done. They're just transdermal peptides, so he doesn't have to worry much about liability. Each bottle is selling for $150. The product is also diluted many times over, so it's mostly emu oil. That's a magical profit margin.

    Also, his suggestion of gcmaf as a primary anti-xmrv therapy also doesn't earn him anything. The primary beneficiary of this is likely Kenny De Meirleir. It will be years before we enter the insurance-covered model that Shebecat spoke up. Cheney is in his 70s and will probably be retired by then. His waitlist is still 6 months-1 year long. He is in no danger of losing his revenue stream and hence the explanation of his behavior as a last gasp grasp for cash doesn't pan out.
     

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