Instant Karma

I imagine most of you have seen the news that the Whittemore’s are in some hot water. I’m sure we will all stay tuned to this stranger than fiction unfolding psychodrama. Apparently, it was even weirder there than I guessed. Maybe they will be too busy now to continue their insane attempt to blame everything that went wrong on Dr. Mikovits. Where is the board of directors? Is there anything there to save? University of Nevada, isn’t it now time to ask that the CEO step down?

Link to today’s song, Instant Karma by John Lennon, since I don’t have the patience to figure out how to embed the video, with next to no internet. I am writing to you from an RV park outside Tuscon on an iPad with no wireless and one iffy bar of cell service, in WordPress, with which I am still unfamiliar. I have been occupied, or perhaps preoccupied is a better word, with the inner workings of hosts, domains, FTP, how to talk to computers and get them to talk to one another. On the WordPress site it says “code is poetry” and I think I am inclined to agree. That said, it is a relief to return to trying to communicate once again with humans.

All that tinkering has left me with a self-hosted website, a new and improved blog, with easy to use (I hope) nested comments, having somhow managed to import the old blog, complete with all 6700 comments (except for the last two written on Weebly, which couldn’t be exported). A few links to fix and one old blog is missing, but all and all, a smooth transition. I now have the ability to ban certain IP addresses without having to moderate comments. I am increasingly willing to do so, as I recognize the potential for intentional disruption and disinformation possible on the internet.

Hoping to further the discussion and sharing of ideas started here in a safer, more organized environment, I have set up a full functioned forum, also hosted at I am a newbie administrator and not a forum frequenter, but I have some wonderful moderators to help us out. Unlike the blog, to stay signed up, you must fill out a profile, including your full name and advanced degrees, if any. In the interest of creating the safest space possible in which to share, if you must use a handle for one reason or another, I need to know who and where you are, or you will be unsubscribed; I will however keep your identity to myself. I am hoping some doctors and scientists will join us; I will moderate a private Physician Scientist Round Table. There will be specialty forums, e.g. Lyme Disease, Biotoxin Illness, Autism Spectrum Disorder. Moderators will send warnings for personal attacks or suspicion of intention to disrupt, and refer to me. I will have a very short fuse for banning. Off-color humor is permitted. Disagreement is encouraged. It is my sandbox. Playing nice required. Here’s hoping it is constructive.

I need to figure out the settings and turn on the comments. WordPress isn’t as user friendly as Blogger, but has many more capabilities, once I figure out how to do it:). I’ve been working mostly on getting the forum going and haven’t learned WordPress yet. I am grateful to Blogger; it was immediately accessible and simple to use when Ali said, “Mom, you should start a blog.” Our needs have grown and, with luck, the new forum should be live soon. I apologize in advance for any technical glitches; I am on a steep learning curve, but still definitely a newbie. I’ve set up a framework of topics to get us going. I’m hoping to accommodate the needs of various groups for deeper discussion than could ever happen in blog comments. Let me know what other topics you might want, after you register. Also, if anyone has a special interest or expertise and would like to help moderate a particular forum, please get in touch. All suggestions appreciated.

Keep Paddling

I started writing this as a comment responding to Jack, thinking about his request to simplify my “message”. One of my very intelligent patients, background in the social sciences, also wrote after I posted the last blog, that she couldn’t follow the science. So here is my attempt for them and others who feel that the science is beyond them. This explanation requires only the most basic understanding of retroviruses, as in this Wikipedia article: Retrovirus.

Here it is: I think that simple animal retroviruses, endogenous and exogenous, were introduced into the human population in the form of live attenuated vaccines. The first outbreak of epidemic neuromyasthenia was in 1934 at LA County Hospital, 2 years after the first paper was published on the use of the Yellow Fever vaccine in humans, a live vaccine that was produced in mouse brains. Killed vaccines produced in rabbit spinal cord was used in the late 19th century for rabies. There also may have been low level natural zoonoses prior to that, nature’s normal process. The vaccine industry has continued to do essentially the same things in a more refined way into the present day, even though it should have dawned on them by the late ‘70’s that there might be a serious problem. They have persisted despite huge anecdotal evidence that vaccines are harming large numbers of people (in addition to the good that they do). Furthermore, many new biomedical “advances” have put the human species at further risk, e.g. xenografts, xenotransplants, hybridomas, chimeras, designed to, or having potential to fuse human DNA with that of other animals. It’s a dirty little secret that the biomedical industry doesn’t want to look at.

The previous blog was an attempt to show that it isn’t as simple as that we got infected with one particular virus (unfortunately for us); therefore proving that it isn’t XMRV doesn’t mean much. It is possible, maybe even likely, considering the number of different exposures, that certain batches of vaccines contained not only infectious virus, but also missing components which allow defective human sequences to replicate. In other words, new incoming animal viruses could have increased the pathogenic potential of what was already there, in susceptible individuals. This is also the problem, it seems to me, with mixing the DNA from several individuals together to make one, as they did to make the chimeric monkeys born last week. Especially with primates! Thus there has been an infectious assault on mankind (domestic animals too), maybe a million years worth in a century, without a million years of evolutionary protection.

This hypothesis is plausible and it is consistent with what we know about the retroviral diseases of animals. It is consistent with the enormous observed increase in neuroimmune diseases and various cancers, as well as being an explanation for the emergence of the new human illnesses ME/CFS and ASD, over the last 80 years or so. I am not discounting the environmental piece. I think that our toxic world poisons us in various ways, and also favors viruses that are highly evolved to take advantage of the weak.

Scary? Beyond belief. Almost too scary to look at, except for those of us already living the worst consequences of the nightmare. It is right up there with turning the earth into a toxic wastedump and ignoring global warming. We have screwed the pooch, so to speak. Got too smart for our own good.

I enjoyed the paper by Dr. Hyde that Erik posted in the comments: A Brief History of  Myalgic Encephalomyelitis and an Irreverent History of Chronic Fatigue Syndrome. As you know if you’ve been reading regularly, I don’t agree with him about gradual onset patients, but the history is very well told. That disagreement goes to the heart of the matter however. It is possible that different viruses are involved in gradual onset. It may well be batch related differences, interacting with different genetic weaknesses. It got muddier after the obvious infectious outbreaks in the ‘80’s. His focus on an incubation period of less than a week, could be a subset triggered by a particular helper virus. There was a wave of patients that got sick in the mid ‘90’s, but the pattern wasn’t clearly epidemic. With time and more people falling ill, it has become much muddier than the history of early outbreaks that Dr. Hyde tells. The difficulty defining “the” patient cohort, and precisely what “the” disease is, may be because there are many possibilities. But they are all variations on a theme and seem to wind up in remarkably similar places. The same can be said for autism; there are a few fairly discrete variations on how ASD is initially expressed. Excluding patients clinically is counterproductive. You might want to do so for a study, but not clinically. And definitely not politically. There is strength in numbers. The attempts to prove ME a separate illness haven’t resulted in sympathy for the afflicted.

I couldn’t agree with Dr. Hyde more with respect to his comments about how doctors are made and what they worry about. Being laughed at is definitely high on the list of concerns. Better to shut up and hide what you don’t know. Writing this blog has required a willingness to be wrong that I didn’t have when I was young. As I have said all along, I could be wrong about anything. I have been before. I have been to the brink with my health, having almost died a couple of times. Feeling that the end might be near shifted my perspective about what matters. Things I used to worry about a lot have lost their power over me. Balancing my karma has become more pressing. It is much easier to cut through the bullshit than it used to be. Much easier to break from Dr. Hyde’s sheep-like herd mentality, engendered by medical training.

My original goal in writing this blog was to prevent patients from making the mistakes that I had. Shine a little light on the black hole that our family fell into, so that others could save themselves the trouble. But it has been an interactive process and I have learned a lot. The comments lead me to the next blog, as happened this time. Writing it has made me feel connected to people all over the world, the few nasty commenters aside. I allow the abusive comments (unless they cross over to threatening), because I don’t want to slow the conversation by moderating and I don’t want to judge what can and can’t be said. Disagreement is welcome, but some basic netiquette would be nice; my standards for good behavior are pretty low:). Internet anonymity allows striking out without regard for how ugly or dumb one appears, and the content of this blog is so serious and emotional, that I accept some level of inconsiderate background noise. The good part of allowing obnoxious comments is the cross section of the community it affords. A slice of life. I am endlessly surprised by how angry my point pf view can make some people. There are a lot of very sick, very frustrated people out there. Very talented, intelligent people too. So much suffering. So much waste, since the disease is reversible for a very long time.

It is deja vu. Defreitas all over again. Actually, Simmelweiss all over again, who figured out just prior to the germ theory that if doctors washed their hands between touching cadavers and delivering babies, many fewer women died of puerperal fever. His colleagues couldn’t believe it was something they couldn’t see, even presented with the observation that there was something simple they could do to save lives. They were embarrassed to be asked to change the way they did it. They justified not changing by saying Simmelweiss couldn’t offer the scientific reason for his observation. Anything is better than admitting you might have done something stupid that hurt people. Simmelweiss died of a beating received while in a straight jacket. Barry Marshall had to infect himself to prove that ulcers were caused by a previously unrecognized infectious agent, not very many years ago. Humans are resistant to change and really looking at what happened that made us sick is going to be very embarrassing to a lot of people.

The observation that too many people are being injured by vaccines in no way discounts all the people that were saved. It does however call for an attempt to define who is at risk. Please consider that excluding certain people from vaccinations is not a new concept. Children with immune deficiencies, cancer or allergies to vaccine components, e.g. eggs, have always been excluded. Pretending it isn’t happening because the MMR vaccine doesn’t “cause” autism, is about as idiotic as saying that our disease isn’t retroviral in origin because XMRV was probably a contaminant.

After the heady feeling that we were about to be saved, it’s tough to go back to the diminished expectations inherent in living life with this illness. Personally, I continue on a very slow uphill course, though adjusting to going off Actos and onto Lexiva hasn’t been fun. The improvement is only apparent if I compare now to three or six months ago. I’m struggling with a very real future looming large, after years of fighting moment to moment just to get through the day. It’s almost a fear of success. I decided I could work again about six months after starting arv’s. I was improving, but definitely betting on the come a bit. I’m actually better now than I was then, but not as well as I’d hoped I’d be by the time things were in full swing. I am more limited than I’d like. I want to take on the world, but I shouldn’t or I won’t last. I am a sprinter by nature, but it is a marathon. I am also over-identified with my patients; my doctor armour is pretty porous. My relationships with patients are unique collaborative efforts. They know that if I could fix it, Ali and I would be well.

Ali is doing extremely well, in fact fairly glowing lately, much of the time. She is still going slowly uphill, not well, but she spends very little time in the grip of the illness. It doesn’t own her like it did. Right now, she has a friend from Georgia visiting for a couple of weeks. They have been having lots of fun. She will be starting online college in a week. Her world is expanding. She continues to benefit from high dose normobaric oxygen, modified Meyer’s cocktail infusions and glutathione pushes. She continues on Viread and Isentress, Deplin and treatment for PCOS. Her MCS symptoms are much reduced. She is coming to Hawaii with me in March.

I am less and less optimistic that there will be a treatment breakthrough any time soon, given the apathy and lack of funds. It seems to me that the very large increase in life expectancy in my parents’ generation is going to start trending the other way, no matter how much of the GNP is spent on care in the last year of life, currently 30% of Medicare dollars. Here’s the link to the numbers being spent on various diseases: NIH Estimates of Funding for Various Research, Condition, and Disease Categories. Projection for 2012. $6 million for 4 million people with ME/CFS who have no treatment, not to mention an emerging pediatric group. $3.1 billion for 800,000 people with HIV/AIDS, who have very effective treatment. Batten Disease, a rare genetic illness, gets $5 million dollars. $3 million for hay fever. That seems sensible.We need to fight back. Sick or not. Some of us are well enough. Look what Rivka has managed to accomplish: Demo at Health and Human Services in San Francisco, CA. I don’t buy it that we are too sick to ACT UP. The internet changes all that. Twitter and FaceBook have taken down dictators. I started writing this blog from a place of total isolation and a feeling of nothing to lose, nothing to hide. I don’t feel that way anymore; I have plenty to lose, but telling my truth has become much more important than what anyone thinks about it. The response from patients all over the world has been nothing short of amazing. This is our powerbase and we can tap into it to effect change. This new site has already had 5000 pageloads in a few days. The old site was about to pass 400,000 hits when I moved it.

I spoke by Skype today with an amazing young man. Kyle McNease is a graduate student at Florida State University and has volunteered to lend his considerable expertise to our project. He is converting a new and improved survey to a format that is internet and SPSS compatible (statistical software with predictive analytics). We are working on the issue of how best to define a control group. Dr. Snyderman is working on the IRB. The survey is the best thing I can think of right now that might, nay should, challenge the mass hysteria refusing to look at the infectious component of this disease. Our informal survey suggested several times the usual risk of autism in the offspring and siblings of ME/CFS patients, as well as an increased risk in long term partners of ME/CFS patients. I joked to my family that it will happen now that I have a graduate student, but in truth, the community has a graduate student. We all owe Kyle a big thank you in advance for picking up the ball and running with it.


Today’s song: Rock Me On The Water
by Jackson Browne

Houston, We Have A Problem

It was the linearity of thought on the part of the retrovirology community that made me think it might be as simple as treating XMRV according to an HIV model. Would that had been the case. It was naive. The prospect with which we are now faced is so much worse than that. We clearly are not treating one specific XMRV, at least not the chimera created in Dr. Silverman’s lab in the process of looking for the one specific virus. From the studies to date, it does seem clear that VP62 or anything very close to that is not our problem. I should say- as yet, since a lot of people have been exposed to it and it can infect monkeys. Lots of exposure to 22rV1 also.

It would be interesting to look at lab workers that have been exposed to these viruses over the long term. Also to look at the rates of neurological and immunological disease, as well as early cancers, especially leukemias, in those lab workers. Seems like that would be an easy study for the CDC to do on government employees. My understanding is that the NCI draws and stores regular specimens on it’s employees. Those specimens could be examined for presence of replicating retrovirus, serology to the animal retroviruses of concern, testing for sensitivity, not specificity at first. At least they could worry about their own people, despite seeming not to care about the million or so neglected people who can’t leave their homes. What does the burden of ME/CFS cost, in human terms, in dollars? How much is spent annually on ME/CFS? Somebody reading knows the figures. Could you please share them here? My recollection is that it is about 6 million dollars per year, and the WPI got a significant chunk of that for a couple of years. Why are we so heavily dependent on private funds? Why is our government ignoring the infectious component that is so obvious clinically. They acknowledge that ASD is an emerging disease. What about ME as an emerging pediatric disease? Biochemical and Vascular Aspects of Pediatric Chronic Fatigue Syndrome. Why have they not noticed the obvious overlap in clinical symptoms between the ME/CFS and ASD groups? Or the epidemiological association? We are working on a formal family study to follow the informal study put up on the blog last April. We are sorry it is taking so long; everyone involved is sick and there are no funds.

And now, despite all of this, in someone’s infinite wisdom, we have chimeric monkeys. Does anyone else feel like a stranger in a strange land?

Xenografts, chimeras, hybridomas, gene vectors. DNA Lego. Cut and paste. Isn’t it cool the things we can do? Aren’t we smart? Dr. Switzer mentioned in his last paper, that although he wasn’t worried about vaccines, if he was worried, he’d look at monoclonal antibodies (the drugs that end in ‘mab’, including rituximab). How many people have been helped to date by gene therapy? It seems at least a few have been given leukemia:

There is much concern about scientists making a more virulent form of H1N1? Because it could kill people? Well I’ve got news. There are worse things to fear than death. This is an example of how nobody is worried about this pandemic, or potential explanation for the pandemic, if you prefer. Here is a letter to the editor from 1995 in which the smartest of the smart expressed concern about the possibility of inadvertently infecting humans with animal retroviruses.

What am I missing here? They were worried about it the year I got sick? The concepts involved were understood quite a long time before that. So they thought about it with respect to pig valves, but weren’t worried about vaccines because? Or about xenografts or things like “humanized” mouse cells? Even taking the cruelty to animals aspect out of it, it’s not a pretty picture, since there’s this itty bitty problem that human DNA contains the remains of prior infections with just such viruses, that nature in it’s wisdom has caused mostly to have enough deletions so as not to bother us much. Some of these evolutionary remnants may even get activated enough by this or that toxin, radiation, a particular hormonal environment to start trying to replicate, but are missing some key piece needed to make a complete virus, though there is recognition that even the generation of parts of viruses can cause morbidity. And cross species rescue was known to occur. The first paper was written in 1978.

There is no reason to believe that the invasions of animal viruses stopped long ago in evolutionary time. There’s a new Koala retrovirus: A retrovirus is invading the Koala genome. Wouldn’t it be likely to be happening at a low level all along? Groups would become adapted to the animals in their environment and evolution favored ways to restrict new invading retroviruses. Nomads may have had more problems, but nothing like now, where many of us travel and live with exotic animals from all over the world, for fun. Still, nature has it’s ways of maintaining an equilibrium.

But then, introduce vaccines, and lots of them, from many different animal sources, plus killed vaccines containing adjuvants. Isn’t there a significant risk of unanticipated recombination events, not to mention persistent immune activation favoring virus? Or perhaps an introduced defective sequence supplies just the needed protein for an ERV to be rescued and start spitting out infectious particles. Throw in the toxic overload to which we are constantly and inevitably exposed in modern life. More than an inconvenient truth. A veritable disaster, for the species, not just the unlucky people to be bearing the burden of obvious clinical disease, possibly now in the billions, if the increases in ASD, autoimmune diseases and cancers are included in the tally. Yes, I know, I sound like Chicken Little, but I really do think that the sky is falling. Or already fell.

Take a look at this link. It’s an ad for a company selling kits to retrovirologists to increase recombination events. Not like the H1N1 experiment. Nobody watching here apparently. It’s only the human genome after all.

Granted, the ship had already sailed by the time retroviruses were understood well enough for the implications of attenuating viruses in animal cells to be known. But that didn’t mean, the blinders should stay on so that another generation could be born in ignorance. I can attest that ignorance wasn’t bliss. Consider that an understanding that these viruses are present, and how they behave, might give us strategies to keep people from becoming overtly ill, just as we do with HIV. It is an ongoing emergency. However, the other known human exogenous retrovirus, HTLV, hasn’t gotten much attention, considering 20 million people are infected. Very little work has been accomplished with respect to treatment. That doesn’t bode well for us. Lentiviruses are the only retroviruses that can integrate into non-dividing cells, so whatever we have, HTLV is probably a better model than HIV.

How long can our government ignore the obvious and defend the indefensible? There are some chinks in the armour beginning to show. The Switzer paper discussed in my last blog. The latest paper from Sandra Ruscetti’s lab looked at whether the cell lines at the NCI are producing MLV’s and the answer was 1 out of 60. Not too bad. But not too good either. It was a line from human lung tissue. That’s comforting. The Human Lung Adenocarcinoma Cell Line EKVX Produces an Infectious Xenotropic Murine Leukemia Virus.

Sure go ahead and say I’m nuts. The burden of proof isn’t on me. I’m a doctor. I’m supposed to connect the dots. Scientists, please remember Thomas Edison’s famous statement, “I have not failed. I’ve just found 10,000 ways that won’t work.” There are millions, maybe billions, of people who need you not to give up.