I believe this demonstrates a social ‘immune system’ in science which is remarkable for its ability to distinguish ‘self’ from ‘other’. ~ From my email
I feel like we are post-op. The patient got opened, the problem identified and resected, but the smallest movement produces a wince of pain. Still, it is becoming clear, there will in fact be a future. The dilettantes, fair weather friends, have all gone home, closed the shutters, locked their doors, and minds. Nothing more to think about. We have been easy to ignore for a long time. Now, it’s even worse than that. The scientific community is actually making fun of us in their ignorance, as is the CAA, our supposed representatives, who in 20 years have never managed to sound the alarm. If XMRV wasted some money, what about the CAA? If these scientists were truly objective, they wouldn’t all be so happy about the outcome. Mikovits, Ruscetti and Hanson, a very few others, are the only scientists in the world who know anything at all about the disease. And the fact that they care about us, doesn’t make them wrong. The rest of the scientists in this story are completely ignorant of the pathophysiology. Clueless, and not interested. Racaniello, ERV, commenter Jason, et al have not an iota of understanding about why simple retroviral disease is such a good fit. To them, it’s all about a test, not a disease. Money, glory, fame. Most certainly not about patients. They seem shocked to find out there are real people impacted.
The idea that it is better for the patient community if research into gamma retroviruses stops now, so that all the money can be spent on investigating the same old downstream effects and known pathogens, is a cruel joke.
From the limited anecdotal evidence we have, I’m pretty sure the response to antiretrovirals, even without specific drugs and without a PI, is better than placebo. The AIDS community doesn’t want to share their drugs, even though they are available to healthy partners and prostitutes for prophylaxis. Doctors who have already prescribed antiretrovirals are now, on the heels of the BWG results, refusing to refill prescriptions for their own patients who have improved on them! What could this be but politics and money? Why is the scientific community invested in creating a prohibition against these particular, not very dangerous, drugs? Why so much resistance to the idea of a retroviral etiology that they are gloating as the hypothesis takes a hit. Let’s have a party and burn Judy Mikovits at the stake. Glee. At our expense. Like psychopathic children who enjoy pulling the wings off insects. This, while babies are born with it, new cases are occurring every day and huge numbers of patients, already sick for decades, circle the drain.
The question of whether antiretrovirals are helpful or not and for whom, is a question that hasn’t even been asked, let alone answered. It is politics, not medicine, that prevents it from even being considered. The clinical piece still strongly suggests a retrovirus, or retroviruses. It is possible that it isn’t only gamma retroviruses. ALV’s, alpha retroviruses, do pretty much the same things as MLV’s. Although it is likely that ALV’s would be less infectious to human cells than MLV’s, because of phylogenetic distance from mammals, there is evidence in the literature, by none other than John Coffin, that suggests, under some circumstances, it is possible for ALV’s to infect human cells. But he didn’t think we should worry about it: Science Fiction?
and Pure Speculation
(I can see and hear the virologists, rolling their eyes and snorting, all the way from here). So what’s the motivation for making sure this hypothesis is found wrong? If it is right, it’s responsible for bringing down the health of the species, so some might be a little invested. But it’s so big, that saying it out loud makes you sound crazy. We have a possible source of infection: parenterally administered simple endogenous animal retroviruses. What else causes both neurological disease and cancer? Methylation issues, multiple gene activation in the same patient, persistent immune activation, multi-generational neuro endocrine immune disease. Think top down. What else does that? The fact that not everybody gets sick, that there are various opportunistic infections, that it goes in different directions in different people, that it is of variable onset shouldn’t be so bewildering. There is obviously a greatly increased risk of ME/CFS in the partners, children and parents of patients. Too much autism found in the same families. IT IS AN INFECTIOUS DISEASE. Where are the epidemiologists?
There have been lots of questions, people asking for clarification of the last two blogs I wrote. For the most part, if it was ambiguous, it is ambiguous to me, at least I wouldn’t personally testify to it, especially anything about who did what for the BWG. I don’t think there are any villains in this story. Only people who lost their way, sailing into open ocean in a dense fog without a navigator. People are fallible, and we are where we are because they never had a chance. Much of what ensued was like middle school more than anything else. Nothing sinister. No malice and absolutely no aforethought. It still has a middle school flavor to it, all the way to bullying in order to cover-up.
What I meant by saying that the XMRV testing that was done at VIP Dx is now null and void is that there were likely many false negatives and false positives; therefore it had no clinical utility. It cannot be interpreted. However, everyone knew that it was experimental. At the time, we were grateful to have it. Dr. Mikovits stands by the testing done at the WPI research lab. My understanding of her position is that she was not responsible for quality control or precisely which assays were used at VIP Dx, after the initial release of the test, when Cooperative Diagnostics made their bid for the market. If contamination occurred, it sounds like it wasn’t necessarily with VP62, but with the cultures from hot patients (like us). Apparently, what has been learned through all this is that the labs need to be using precautions required for Mycoplasma. Retroviruses have not been thought to be aerosolized previously, but now it seems, some probably are. There are two papers that show rapid spread through a clean lab in a couple of days, Zhang and Sfanos, linked on the sidebar. The serology is picking up proteins that are, if not actually to HGRV’s, at least very similar to MLV proteins. It has nothing to do with XMRV per se, and cross reactivity has not been ruled out. At least this is how it’s been explained to me, though I know very little about the technicalities of lab testing; more than I used to, but still not much. Therein lies a key problem, little sharing between doctors and scientists.
The slide issue seems like a tempest in a teapot to me, part of the same insanity that requires Judy Mikovits to be a perfect human being or all is lost. There is now an investigation, so in the end, we will find out what the designated judge says. What I would like to know is, how did Dr. Mikovits’s firing go from ‘insolence’ to ‘fraud’ from Thursday to Monday? Dr. Mikovits was fired on September 29 and ERV blogged her over the top accusations on September 30, I’ve been told, though I still have not been to her blog (thousands have visited mine from her site). Who fed it to her? The editors at the Chicago Tribune should be ashamed that Tsouderos was taken in. Nothing more than tabloid journalism. For the record, I waited three days after Dr. Mikovits was fired, before I wrote anything. By then, it was clear to me that it had been decided that Dr. Mikovits’ reputation was the price of the WPI’s survival and my inbox was full of unanswerable letters. I said nothing for a very long time, hoping for a different outcome. Also for the record, I did not send any letters to the press. Trine Tsouderos wrote to me and asked me what I meant by lock-down. I told her “The personnel was locked out of the lab.” (proof of which is on my computer). Nothing else came from me.
Obviously, something went very wrong. Most likely lots of things did. I know Dr. Mikovits would like to have the chance to figure out what. I think the probability that what went wrong was a ‘fraud’ committed by Judy Mikovits is at the very bottom of my list of possibilities. I know her personally and it seems beyond improbable. Inevitably mistakes were made and everyone on the planet has something to hide, so, poor Judy, and poor everyone else involved.
I hope to never be an insider again. Two people have asked me how I could have forgotten what the Whittemore’s did for me. I have not forgotten, but they seem to have forgotten what Dr. Mikovits did for them. I was videotaped for the WPI saying they had saved my life, and it was true. I said nothing, except that I had been fired; I said that because I wanted to distance myself from the decisions being made there. But then Dr. Mikovits was fired. If I hadn’t written anything, Trine and ERV would have had the only say. But I am not going to engage in any further mudslinging going forward. I am now supposed to apologize to this one and that one, who was right because the interloper has fallen; the WPI was wrong and I stood behind them. I was a starry eyed kid then, believing that the cavalry was actually coming over the hill. I am a battle weary soldier now, having taken a few arrows in the heart. I no longer think the cavalry is coming at all, any time soon. Also, I still think that all the people I mentioned at one time or another on this blog in a negative context have behaved very badly, even if everything the WPI ever did is wrong. It’s not black or white. It never was and it never will be. The patients are the ones that get screwed, over and over again. CAA, the most divisive force in our community, HHV-6 Foundation, WPI, it doesn’t matter. Loss and more loss.
So, “Cheshire Puss… Would you tell me, please, which way I ought to go from here?”, said Alice to the Cheshire Cat.
Since I am feeling like my change the world phase is over, as Kita said, what next? My job now is to interpret the events in terms of their clinical significance, one on one. Primum non nocere is my guiding principle, as it was for my first 25 years of practice. When possible, I include the pocket book in that. It is curious what insurance will and won’t pay for, having very little to do with what might produce results with the least risk of harm. In my practice, I am using only LabCorp and Quest for labs. I am no longer interested in results from labs that have a stake in the results.
My attention is on my daughter, as it has been all along. She was “Harvard material”, as my step-father, a Yale/Harvard educated surgeon, said before he died of the late effects of treatment of his Gleason 9 prostate cancer. Ali still might succeed at having a life with the right physical and social support. For a long time I have envisioned a collective with the goal of creating a supportive, assisted living environment for young people with CFS. It is clear to me that I will be dead before there is treatment that approaches a functional cure. Whether you think arv’s are a good or bad idea, we are both doing well on them. Ali is engaging her life again, dating, going out, shmoozing with her illness. Not suffering much at all. Last time she was at this point, she did too much too soon. She is wiser now.
She is very responsive to the right treatments, now that we know what we are treating (not a specific pathogen, but still a context and approach to the illness). Folinic acid is hot stuff for her, Leucovorin 10mg IV weekly for a while, and now she is playing with the oral form, finding some of the same side effects as with Deplin. It appears to build up over a period of time, days to weeks, and cause dose dependent sleep disruption. But some amount helps the overall picture. I am hearing similar things about Deplin from patients. Important initial response, then dose related insomnia, sometimes still with improvement in other things. For Ali, the amount of folic acid derivatives required for positive effect without sleep disruption seems to be decreasing with improved wellness. So she’s tinkering. Next stop, 5-MTHF. I’m starting to order MTHFR mutation testing on my patients (MTHFR Thermolabile Variant DNA Analysis at LapCorp and MTHFR DNA Mutation Analysis at Quest).
She continues to use oxygen with great regularity. We both find it useful for rescue, as well as believing that it supports our recovery, which seems steady and real, but slow. There was a single comment a while back that oxygen had been bad for someone, but without specifics. I want to hear about any problems, since I’ve been advocating its use. I have a lot of experience prescribing oxygen as a hyperbaricist and the risks, without adding pressure, are so minimal as to be almost non-existant. You can always turn it off, after all. Long term, there may be a risk of accelerating aging. That’s all I can think of. I can’t really come up with another reason not to try it, but I certainly want to hear it, if someone has something to add to the discussion. So far, practically speaking, my patients are liking oxygen. It is representative of the insanity in all this that patients can have Fentanyl patches for years and years, but can’t try an oxygen concentrator.
My illness is pretty much refractory to everything, except being positively engaged. For me, helping helps the most. I do best when I don’t mess with it much. I was the sickest when I was taking the most drugs. Antiretrovirals are one of the few things that actually seemed to move me. I sent specimens to the WPI regularly during first year of our experiment. Dr. Mikovits had evidence of our positive response to antiretrovirals, at least initially. I wonder where those specimens are now? I’ve tolerated 5 trips to Reno and 3 to Hawaii in the last 13 months. Pretty good for an ME/CFS patient who had been desperately ill twice in the previous few years. It is becoming clearer and clearer that I do feel better in Hawaii than Santa Fe. I think for me it is the elevation, because Santa Fe is one of the cleanest cities in the country, Los Alamos aside. However I’m hearing from lots of people that say they felt better in Hawaii but who live at sea level (and others who didn’t get better there of course). Some of those people live in really polluted places, like LA and NYC, so that may be the greater factor for them.
I am in complete and total agreement with the mold warriors that environment is critical to success, defining success as the patient’s maximum possible wellness within the context of an incurable, but remittable disease, though my idea of environment is much broader, not just avoidance, but feeding the positive, including strengthening the spirit. Stress makes us sick. My fantasy kibbutz would be organic, as chemical free as possible, MCS friendly, and of course as mold free as achievable. But as important, would be an opportunity to be alone, with necessary help, or to be able to with others who understand and support. To be able to go out, but not fear ruining it for everyone else, if assistance is needed. To not have to apologize for existing. I see the mold warriors insistence that I am the enemy as a microcosm of what anybody with this disease who finds a way out feels. Huge frustration that they aren’t being heard in the face of immense unnecessary suffering. It’s just that from my perspective, hearing from people from the full spectrum of the ME/CFS community, it’s one of many factors, most important for some, but not so much for others.
Almost the most important thing that didn’t happen at the WPI clinic was the use of an electronic EMR by multiple clinicians, so that a large database would be created, which would ultimately be searchable by any parameter chosen. I am using Practice Fusion, free cloud based EMR. It is brilliant. It can only improve patient care for doctors using it. Converting from another method of documentation is difficult, but it’s not insurmountable. It’s possible that physicians might be able to contribute to the creation of a large patient database anyway, even though they are not physically in the same place. I mentioned a particular test above; it is beyond time that clinical research (pardon the oxymoron) was happening in a broader context than one physician’s practice. Thinking about this, and what might be still be possible…
Tonight’s song: Closer To Fine