Returning to function

I flew home from Reno yesterday. It was a very successful trip, aside from the phenomenal distances involved in negotiating LAX; in the future I will swallow my pride and arrange for a wheelchair. I functioned for eight days in a row, much of each day and into the evenings. I felt a little sick some of the time, but nothing even close to a crash and although I am tired today, I don’t feel particularly ill. I am not going out today by choice, rather than necessity. I judge all days now by whether I could have seen a few patients and the answer has been yes for some time. I continue to take the steps necessary to make treating patients again a reality for me.

I wish I could report that Ali is doing as well as I am. She pushed in November and into December including a social life. She is now doing fine, but not going out. She doesn’t seem in any way as sick to me, or to my husband, as she was when she started antiretrovirals, and she is tremendously better than when she was on Lyme treatment, but it isn’t where she needs to be. Disappointment makes it worse too. In my opinion, some of it is needing to see ahead more clearly than she now does, having completed a major goal. Until the detection issues are worked out and we have viral load measures of all viruses present, assessing degree of recovery is going to be a process, inextricably tied to stress with this diabolical disease. Ali’s biggest physical challenge now is episodic dysautonomia triggered by physical and emotional stress, worsened by not wanting to get sick alone in public.
In my first career, as an emergency physician, I was involved in administrating and staffing emergency departments and urgent care clinics. My visit to the WPI was filled with synergy of experience, talent, ideas. It looks likely that the clinic will be ready to see the first patients in the near future. There is a long list of patients requesting care and no consensus, but an approach to the illness is forming. One thing is very clear, patients cannot be expected to suspend judgment for years while scientists try to make each other wrong instead of coming together to figure out what is true, to spare patients as much further suffering as possible. Suffering is inevitable, but avoidable suffering is completely abhorrent. However the specifics of the retrovirology unfold, it is obvious that CFS and several other unexplained neuroimmune illnesses of skyrocketing prevalence are due to active retroviral infections.

My mail is full of questions about the contamination papers. It would appear that these researchers were brought together by some undisclosed power to undermine the magnificent work that has been done to begin the process of unraveling why so many people have been ill for so long with neuroimmune illnesses. Nothing has been said of value in those five papers, except that future studies will have to be done carefully and that the authors are running sloppy labs. I have not seen anything that would refute one word of Lombardi et al or Lo et al. Lombardi/Ruscetti/Mikovits cultured virus and showed antibody responses in infected patients, thus the techniques used in that paper are the gold standard. For the nth time, XMRV is not a mouse virus. It is an exogenous human retrovirus, phylogenetically distinct from the MLV’s. You can’t have an immune response to a contaminant. And there is reason to believe, that, at least for a few patients, antiretrovirals help.
The discovery of the P variants means that we are faced with a level of complexity that will likely confound a quick sprint to success, as would have happened if it had turned out to be as straight forward as a single virus that makes people sick once activated like AIDS. More and more the clinical and epidemiological pictures suggest recombination events with more than one virus involved in pathogenicity, as it is with MLV’s. It’s going to take time to sort out. The P’s haven’t been fully sequenced or cultured yet. Here is another mouse model that fits well involving a mixture of viruses:
Arrogance and disbelief of the patients allowed this to happen. Where have all the epidemiologists been? While the health of the species was irreparably damaged forever, everybody went on a coffee break. CFS is little. Here is what the CDC will admit to with respect to the increased prevalence of autism spectrum disorder: CDC autism prevalence report and Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, United States, 2006. These numbers represent children with a lifetime of disability. GWS. MS. All kinds of cancers. Rare cancers now not so rare. Glioblasroma. Who ever heard of Mantle Cell Lymphoma? You will be hearing of it more.

Coverage of note with respect to the contamination papers, though it seems obvious that we are well beyond contaminated PCR reagents. Rather it is the patients that are contaminated with retroviruses that have been allowed to spread unchecked through the human population for decades longer than should ever have happened:
December 20, 2010: WPI Statement Regarding Retrovirology Articles 
The Lombardi et al. and Lo et al. studies were done using four different methods of detection. They were not simply PCR experiments, as were the studies by McClure et al. and others who have recently reported their difficulties with contamination. Experienced researchers such as Mikovits, Lombardi, Lo and their collaborators understand the limitations of PCR technology, especially the possibility of sample contamination. As a result, we and Lo et al. conducted rigorous studies to prevent and rule out any possibility that the results reported were from contamination.

In addition to the use of PCR methodology, the Lombardi team used two other scientific techniques to determine whether, in fact, we had found new retroviruses in human blood samples.    We identified a human antibody response to a gamma retroviral infection and we demonstrated that live gamma retrovirus isolated from human blood could infect human cells in culture. These scientific findings cannot be explained by contamination with mouse cells, mouse DNA or XMRV-related virus-contaminated human tumor cells. No mouse cell lines and none of the human cell lines reported today by Hue et al. to contain XMRV were ever cultured in the WPI lab where our PCR experiments were performed. Humans cannot make antibodies to viruses related to murine leukemia viruses unless they have been exposed to virus proteins. Therefore, recent publications regarding PCR contamination do not change the conclusions of the Lombardi et al. and Lo et al. studies that concluded that patients with ME/CFS are infected with human gammaretroviruses. We have never claimed that CFS was caused by XMRV, only that CFS patients possess antibodies to XMRV related proteins and harbor infectious XMRV, which integrates into human chromosomes and thus is a human infection of as yet unknown pathogenic potential.

“The coauthors stand by the conclusions of Lombardi et al. Nothing that has been published to date refutes our data.” Judy A. Mikovits

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9 thoughts on “Returning to function

  1. >Thank you, Dr. Deckoff-Jones. You bring such valuable spirit and experience to this work with WPI. You give me confidence in the WPI's approach to treatment.

    I especially like this one quote: "While the health of the species was irreparably damaged forever, everybody went on a coffee break."

    Patricia Carter
    XMRV+, 24 years M.E.

  2. >Thanks for helping us try and make sense of all this. Every day I get articles in my inbox with the headlines about contamination. And a lot that just say "XMRV not the cause of CFS" I know it was never the proven cause, but still it's disheartening.

    Happy to hear about your successful trip, and sorry to hear Ali is not doing as well as before. I know the disappointment can be hard. Hope she will do another post when she is feeling up to it.

  3. >Thank you Since my whole family got sick within months of each other and have been ill for 24 years and my sons now have autism I know We have something that contaminated my family as well as others. Thanks for your hard work it's inspirational!
    family of 4 with ME/CFS
    2 boys both with ASD's

  4. >I am sure XMRV, SV40, CMV, EBV, HHV6 are involved in our family illness's…including CFS' ME, autism, seizures, mitochondrial dysfunction, one child with heart problems involving a pacemaker at 29, etc. To wit, the toxicity of our world, which induced cell mediated immune dysfunction, you have what I call a perfect storm. I am sure the metals in vaccines, in our teeth, in our food supply, the endocrine disruptors etc, all contribute to this soup of damage. But I am sure of one thing, people up in the upper escholons of decision making for medicines, and prevention of diseases, have known this was afloat for decades, and profited off of us big time.

  5. >Thank you for doing this research. It's a wonderful endeavor and all of us mysteriously ill people appreciate it.

  6. >I am really appreciative of your relating your experiences to us PwCFS..I am rooting for you and your daughter. You are heroic. Karen Hart

  7. >Take care of yourself and go slow. I hope for the day you will be seeing a few patients a day. Thanks for allowing us to witness your journey.

  8. >They have underestimated the intelligence of patients, advocates, WPI, and the number of scientists whose curiosity was piqued by the Science paper. They thought their clever coordinated contamination campaign would put the nail in the coffin for XMRV and CFS. It's not going to work this time. Although they can slow the down, they're only prolonging the inevitable. The truth will win out. (Though now it is apparent that DeFreitas never had a chance.)

    Good luck with your treatment. Have you thought about adding some of the older therapies that have often been used with CFS (valtrex, isoprinosine, etc.)? Speaking of isoprinosine, in addition to its effect on the immune system, there is a study showing it can increase the plasma concentration of AZT when they are taken together.

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