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

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