When I started this blog, I was a sick patient, excited about a process of discovery that was unfolding for me. I had a lot of anger and dismay at the information vacuum surrounding the situation. My motivation was to inform and do whatever I could to move the process along. Since then, I’ve recovered a large degree of function and have returned to private practice in Hawaii. I also work for the WPI, as an independent contractor, in very specific capacities, still intending to help open the clinic in Reno. At this point, of the many perspectives I share in this epic, I identify most with being the mother of a patient, and of a healthy 16 year old son, who has some of the same little things my husband, daughter and I do. I have suspected that he has what we have for eight years. He had the most positive tick borne disease tests of anyone in our family. Dr. Charles Ray Jones, who I believe to be a very fine doctor, decided wisely not to treat him for Lyme. He has done very well, can push the envelope. But under the circumstances, I worry, as we all do for our unaffected children. So my motivation for writing remains essentially unchanged. I only want the truth, so that Ali can have a life and my son not lose his. It’s not because of any affiliation, or being invested in anything other than getting to the bottom of it, so that we can all have some meaningful treatment, finally. I want the medicine to move forward, and it shouldn’t have to wait until the scientists dot all the i’s and cross the last t.

When I learned of the request from Science for retraction of Lombardi et al and the EEC, I cried off and on for a day. The thought that brought on tears was “the work is going to stop.” Nobody will put their grad students on it, because it will ruin their careers. No one will spend the money because Knox et al are trying to put the nail in the coffin. This can’t be allowed to happen. I’m not the best person to pick the paper apart technically, though it has some obvious flaws that the scientists will address, I’m sure. But the logical flaw is more basic than any of the details. Unless someone has a test that can identify a sick person, a negative study, using different methods from the original study, doesn’t contribute anything new. Absence of proof is not proof of absence.

The only thing new in the Knox study was Dr. Peterson’s participation, the authors trying to suggest some sort of uniformity of patient selection with the original study, as if patients are hard to come by. Since they weren’t the patients from the original study, the fact that they came from his practice contributes nothing. That only means that they came from a doctor with a conflict of interest. All the paper shows, along with some inane speculation, is that Knox’s lab couldn’t reproduce VIP Dx’s results. I am guessing that Abbott developed the serology test which didn’t work that was used in the study, but the discussion of their negative serology data is too superficial to consider seriously. Serology, in the end will be the clinical key. Patients don’t make antibodies to contaminated specimens and PCR is clearly too finicky. Serology has been left out of most of the discussion to date. We know so far that tests derived from monkeys infected with a VP62 clone don’t work on humans. We don’t think the currently available test from VIP Dx is sensitive enough. We believe that positives are true positives, but there are false negatives, including people with positive cultures. The right test should be a goldmine for someone. It’s not that it’s a problem for us if someone makes money on our disease, it’s that sometimes the quest to own the patent supercedes the good of the patients. If greed is the motivator, so be it, as long as it leads to progress. In this case, people went to a lot of trouble to slow progress.

I accept that there will be some people who don’t like me for speaking out. Now that I’m not powerless anymore, I’m supposed to be more circumspect. Use my inside voice. It’s worth it for me to take the flak, for the many patients who say that sharing my thoughts helps them to think about their illness and options. So let’s see what I’ve said that’s so inflammatory. Konstance Knox once had a relationship with the WPI, that didn’t end well. Easily verifiable. Dr. Peterson also had a relationship with the WPI that didn’t end well. I am not discounting all of the work that he did for ME/CFS in the past, but that was then, this is now. If he was concerned that there was a problem with the testing, why didn’t he use the resources at his disposal to work on it with the scientists at his own institute? Instead he gave specimens to a scientist with a conflict of interest. All of this must have been a confusing nightmare for the patients involved. What did he accomplish? Res ipsa loquitor.

As I’ve said, I don’t know Dr. Peterson personally, but I am working with the same people he did and I know what motivates them. The Whittemores have put it all on the line. They are dedicated to getting to the bottom of the illness, whatever the answer, for the most personal of reasons. Dr. Mikovits is an honest person who cares deeply for the patients. I am proud to call her my friend and it breaks my heart that she has to live through this. She in no way deserves to have her integrity questioned. She has no financial stake. She is staying to weather the storm for us, the patients. It started out for her as science, but getting to know the patients has really affected her on a personal level. Nobody wants to get to the bottom of it more than she does. She should be getting assistance, not a bunch of people trying to discredit her.

I don’t believe that my writing should alienate anyone who truly wants to help. I hope that at the very least, it makes the protagonists consider their own motivation. I haven’t criticized anyone whose heart is with us. I am being cast by some as an angry conspiracy theorist. In my opinion, human frailty is almost always a better explanation than nefarious schemes. Greed, ego, shame, desire for revenge are generally enough to explain what moved a particular situation. In this case, there was a joint effort involving disgruntled former contributors, people working for a company that makes it’s money on lab tests, and a doctor in an academic setting (about whose motivation I know nothing). It doesn’t really qualify as a conspiracy, but it smells. And Science’s cooperation with it smells. Harmful to patients everywhere if it stops research. As for anger, I’m mostly not angry anymore. When I’m not agitated about the lack of scientific progress, I’m a pretty happy person. However, the events of the weekend, really shook me up, made me very mad, and sad. And scared, that the work could stop.

The idea that 22Rv1 was created in a lab after CFS already existed, therefore proving that XMRV is a lab contaminant and nothing more, is another logical fallacy. It’s pretty clear at this point, that XMRV isn’t the whole story. Similar events to the one described in Paprotka et al, with other proviruses could have happened before that, including naturally, even before modern tissue culture or xenografting techniques. Neuromyasthenia is hardly a new phenomenon, first described a few hundred years ago. What is new, is how common it has become. I can’t imagine why there isn’t more concern that the cell line produces a fully replicative exogenous retrovirus capable of infecting human cells. But we can all relax now because Konstance Knox says that human serum restricts it in vitro, in some unspecified way and any antibodies that might be found are only some kind of “autoantibodies”. Well, that’s a relief for the human race.

The over the top concern about the use of antiretrovirals seems the height of paternalism, especially when you consider that HIV drugs are used to prevent transmission to healthy high risk people and unborn babies. Here’s an exciting article, suggesting another possible long-term benefit of antiretrovirals for us: Mouse viruses and human disease. Stewart/Cameron

I’ve been asked now and again why I don’t wait until I know the outcome of the therapies we try before reporting. Whether a particular therapy does or doesn’t help us is almost irrelevant, as many things help a few people and not lots of others. The important thing is to share the ideas in order to further the discussion. We are beginning to have enough information to think ahead. Physicians are supposed to connect the dots to help their patients. In this case the dots turn into a pretty frightening picture. It is unfortunate that writing about the implications of human gamma retroviral infection makes one sound like Chicken Little. But the sky really is falling.

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57 thoughts on “Motivation

  1. >Hi Jamie, Thanks for the blog – it always clarifies things for me. Its great that you can write like this for all of us.
    If Lisa Simpson reads this , can you please get in touch with me? I would love to ask you which dr you see and who prescribed the antivirals. I've only ever been able to try acyclovir. My life is bearable , but I have a partner who is so ill its not funny. His story is similar to yours and we are desperate to find him help. We are well informed and wouldn't be any bother to you. We are in Auckland, thnx Jill

  2. >"Establishing a viral cause in ME/CFS, Fibromyalgia, Autism, MS, etc. with possible affiliation to vaccines must terrify the corporate elite and their cronies in government …"

    That terrifies the Trolls too. This is the very reason why there is so much hatred and venom from that merry fraternity aimed at WPI in general and XMRV pathogenicity in particular.

    Should a viral causation of ME and/or autism, with links to vaccine reactivation or contamination, finally be shown, their painstakingly-built sense of self-worth and identity will crumble instantly.

  3. >Hi, I am also wondering if Lisa Simpson would be willing to email me. I have been suffering for over 50 years (since childhood) and am now in extremely severe stage. (heart, liver, ciguatera neurotoxin, HHV6 et. al.)Have not been able to tolerate much in past but would like to try antivirals. I would very much appreciate it if Lisa would be willing to write to me as to what she has taken and in what forms, amounts, etc.? Thank you so much.
    Sumitra (

  4. >Quote: "Should a viral causation of ME and/or autism, with links to vaccine reactivation or contamination, finally be shown, their painstakingly-built sense of self-worth and identity will crumble instantly."

    That's what I thought too. But I saw doctors who denied CFS for years that changed their minds, and wanted to find out if they felt any remorse for years of disbelief and denial.

    Far from it.

    "I am being scientific, and scientists cannot afford to believe in hearsay and rumor.
    The case for CFS was weak and insufficient.
    When the evidence was strong enough, I acted accordingly, as a responsible and ethical person should"

    So there you go…

  5. >Note: Posting as Anonymous only because blogger has had had logging in issues on all sites.

    Dear Jamie,

    You said:

    "still intending to help open the clinic in Reno."

    Can you please elaborate? I live in the area but have never found a dr who knows anything about CFS. I cannot afford Dr Peterson @ Incline even if they were to accept my application. I've been sick for 25 yrs and my daughter also has it.

    Thank you so much for your hard work and dedication to this blog.

    God bless you,

    ps. I am appalled at the filthy language being posted by anonymous commenters. Inexcusible!

  6. >I am new to this kind of dialogue related to illness. I am a researcher and writer. I have also been suffering with CFS since the end of 2002. Let me just say this: I was a completely healthy collegiate athlete in the prime of my life, before this illness STRUCK. I was studying Literature at St. Peter's College, Oxford University. I was invited to return to Oxford for my doctoral work. I was being touted as an up-and-coming scholar. All of that changed as CFS gripped my life. I went to bed one night. Everything in seeming order. I awoke, not to sunlight and life, but a cacophony of symptoms that quickly escalated as my health rapidly declined. That day, January 15…I fell into an abyss. What I find revealing about these posts and the subsequent comments, with all of the banter back and forth, is how adept and verbose the CFS community is. I have listened to the same questions, "Don't you think you are depressed? Is there something that you are trying to avoid by being sick?" My response is tempered now, perhaps with a little more age–just turned 30! Never thought I would live to see this decade.

  7. >But, my response is still the same: What about my globe-trotting, fun-filled, supportive, healthy life was so threatening that I would have chosen this to replace it? Furthermore, what form of depression could ever account for my abnormal labs, facial paralysis, skyrocketing heart-rate, indomitably sore throat, sudden weight loss (50lbs–mind you I was a collegiate tennis player with no fat and only weighed about 160 to begin with) profuse sweating etc, etc? The ER doctor who saved my life thought, upon presentation, that I had AIDS. As this information about XMRX and other retros emerges, I now begin to understand why every physician I have seen wonders if I have HIV/AIDS. They all have told me that I have a host of "immuno-viruses that exist in humans." I have always wondered what makes my condition so excessively different from HIV. Dr. J, I am your son or at least the version of him that you desperately hope never to see. My twenties were mostly spent confined to a bed. My parents leveraged all that they had to keep me alive. I somehow survived the illness and the incompetence of the professional communities and experienced a miraculous recovery after many years of complete invalidism! I am thankful to God for the progress that I have made because what is often overlooked is the suffering of those who cannot utter a word or interface with technology such as this. I could not. I went from being a scholar to not being able to comprehend a written sentence. I couldn't even understand a simple math problem. I knew that I knew how but its like the ability to access it was denied. There is an eery elegance about this illness and when we get divided…we miss each other and the subtleties of CFS. I am like everyone else who waits and prays for a cure. I get tense because I have been told that CFS will come back. I still fight fatigue with everything in me. I seem to catch whatever goes around and fight it for much longer than others. I hope all researchers will continue to work at this and tell us more about what we don't know. It seems ridiculous to spend money trying to disprove something if you know it is false. If WPI is wrong and XMRV is not implicated in the pending research…it will be revealed. Spinning needed wheels to say nothing about something is beyond my comprehension. I challenge all of the cloaked experts and anonymous to produce substance, not merely a refutation. If XMRV is somehow a lab contamination, as you believe it to be, than by proving it to be a misgiving you have spent needed resources expediting the inevitable. Spend those dollars on research that leads to a potential understanding, not simply points to something you already believe to be a dead end. I am shocked at the lack of logic behind it all sometimes. It doesn't do the pregnant couple any good to tell them that they aren't having a zebra! Of course we need to rule out what CFS/CFIDS/ME isn't. With that, though, tell me what it is!

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