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Hibernation Consternation

My muse left on extended vacation when the Lipkin XMRV study and subsequent press conference succeeded in discrediting retroviruses as a possible explanation for ME/CFS, with lots of important questions still left unanswered. The discussion reverted to whether or not it is a real disease and which set of diagnostic criteria are best, so there hasn’t been much to inspire me. It got pretty depressing. The IOM report was a joke: “The term ‘myalgic encephalomyelitis’ is not appropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in patients with this disease…”. Fail. I don’t know what to make of the Lipkin cytokine paper, because I take with a grain of salt results from a debunker on call for the government. XMRV wasn’t the first time: Lack of association between measles virus vaccine and autism with enteropathy: a case-control study. Nothing worth blogging about there. Certainly nothing hopeful. But recently, the Naviaux study was published and a couple of proposals posted by NIH have been making the rounds on Facebook, so I’ve had an uptick in email, some asking what I think about the paper and some telling me about successes with antiretrovirals in Europe, as well as encouragement to blog again. So, feeling very rusty, I’m going to give it a go.

My reaction to the Naviaux et al paper, Metabolic features of chronic fatigue syndrome, was dismay that the damage is so extensive and widespread. So many broken pathways. Finding a specific drug target seems very unlikely. There won’t be an answer anytime soon. They, and everyone else, including Lipkin and Hanson, are studying downstream effects, without attempting to identify the root cause. It’s a good thing that people are thinking and looking, but hibernation and dauer are not disease states and being compared to larval worms isn’t exactly the image change we need ;-). Even if they’re right and a handful of common abnormalities in this very heterogeneous group is accepted as validating real disease, my guess is that the findings will be similar in other diseases, e.g. GWI, fibromyalgia, ASD, maybe even chronic depression. GWI patients have PEM and often meet criteria for ME/CFS. As I said five years ago, I think all of these diseases of modern civilization are related and there is a family factor that confers risk to partners and offspring. There are even a few patients who believe themselves to be contagious by casual contact.

So what lies in wait to be activated by heterogeneous triggers and once activated causes immune dysfunction, neurological disease and opportunistic infections? The most likely explanation lives in the realm between retrovirology and genomics, the difference between the fields being as small as a single mutation. We have been injecting retroviruses and pieces of retroviruses into people for over a century. What are the chances that nothing bad happened from that? XMRV apparently doesn’t infect people, but injected into monkeys, it sets up a low level infection. Retroviruses recombine and rescue each other. Environmental toxins activate retroelements (HERVs and retrotransposons) which can recombine with each other or new incoming retroviral sequences and fully replicative retroviruses from vaccinations, biologics and lab workers. XMRV was created in a lab. The Paprotka paper said the odds of the recombination event that produced XMRV happening twice are infinitesimal. On the other hand, the odds of similar events having happened many times is very high I would think, since there have been so many chances. In the last few years it has been found that many cell lines produce viruses like XMRV which are capable of infecting human cells in tissue culture. Lipkin said in a press conference that 85% of Montoya’s samples contained retroviral sequences and in the XMRV study, 6% of patients and controls were positive for an antibody to SFFV, a very nasty murine retrovirus, but everybody is choosing to ignore those clues because that well is poisoned. Nobody wants to be the next Judy Mikovits. Lo and Alter both dropped it like a hot potato, returning to other research, never mind the question of how all these labs, Mikovits, Ruscetti, Silverman and Lo/Alter managed to consistently contaminate the patient samples at a higher rate than the controls.

Take a look at this paper: Are human endogenous retroviruses triggers of autoimmune diseases? Unveiling associations of three diseases and viral loci by Bjørn et al. “We speculate the possibility that recombinants or mixed viral particles are formed and that the resulting viruses stimulate the innate immune system, thereby initiating the autoimmune response.” They looked at multiple sclerosis, type 1 diabetes mellitus, and rheumatoid arthritis. It is one of several recent papers heading in this direction.

I hypothesized way back when that ME/CFS is related to MS. There are case reports of MS improving when patients take antiretrovirals, Multiple sclerosis patient walks after taking HIV drugs, and new cases of MS are rare or nonexistent in patients taking AIDS drugs, HIV and lower risk of multiple sclerosis: beginning to unravel a mystery using a record-linked database study.

Our very own Gerwyn Morris published an excellent paper on the subject of ME and MS being related diseases. Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics. I’d like to take this opportunity to acknowledge Gerwyn’s extraordinary achievement. If you search “Morris Gerwyn” on PubMed, his name appears as an author on 23 papers since 2013, usually as first author.

Lots of evidence has been published about the MS retrovirus, MSRV. Viral particles have clearly been detected, but it is less clear if these particles are ever infectious. There are several new papers reporting findings similar to this one, Two endogenous retroviral loci appear to contribute to Multiple Sclerosis.

Which brings us back to where this blog began. Are retroviruses at the bottom of ME/CFS? Might antiretrovirals be effective for ME/CFS and other diseases? Despite the thorough trashing of retroviruses in our disease and the intense ongoing fear mongering about how dangerous antiretroviral drugs are, apparently people are still trying it in Europe. The experience five years ago, when maybe a hundred people tried various regimens in a completely uncontrolled fashion, was some subjective improvement in about half, and no complete recoveries, except for one notable exception. The exception was a teenager who had only been sick for eight months. His mother wrote in the comments on this blog. He recovered fully, took the drugs for 6 months, stopped and as far as I know, didn’t relapse. I still find it upsetting that the prescribing physician was too cowardly to come forward and write a case report. How many teenagers could have been treated acutely since then? There were no injuries that I ever heard of. I was in touch with many of the doctors who were prescribing and there was lots of sharing, doctors and patients together, the only time I’ve ever seen that happen. One doctor I knew prescribed for 50 patients and concluded that it was better than placebo, but not worth the risk of prescribing it.

However encouraging the Naviaux paper may be with respect to advancing the case that ME/CFS is, in fact, a real and dreadful disease, it is discouraging with respect to finding treatment. A viable drug target seems unlikely. We are left with global strategies, hoping for synergy between therapies that don’t stand alone, same as now. But just as I was feeling dour about dauer…

The NIH compilation of responses to their request for proposals was published here. Read bottom of page 3 to top of page 4. I’m not going to mention any names for Google, because I don’t want to increase the risk of regulatory repercussions against a doctor brave enough to report successes with antiretrovirals. Also please read pages 9-12.

Then I heard from a patient in Europe who is having success with antiretrovirals after 20+ years of illness. In his own words:

I have been ill with ME since my mid-teens in 1994. Onset was in two stages. Firstly a gradual onset, whereby I was feeling increasingly more tested after the combined measleas/rubella vaccine, followed a few weeks later by the polio booster. And then secondly once that prodrome had got its hold, the downward cascade was always inevitable, and just waiting for me around the corner. 1994-2014 were harsh and brutal years. I hovered around 55% on the Bell scale and it was torture enough.

From September 2014 to July 2015 I took tenofovir 245mg. Improvement was an upward curve, albeit with some turbulence. Sometimes taking half- week, or full-week, or month-long breaks when I felt my body needed a rest from it so as to hold its own for a while. From August 2015 to September 2016 I added raltegravir to tenofovir and initially at full dose daily which sent me to sleep almost in the first few days. During this period I toggled around until I found the right balance for me. I got it right in the end around about June/July 2016 and the past two/three months have been great. My current regimen is tenofovir 245mg Tuesday through Friday, and on Tuesday and Thursday I also take raltegravir 400mg x 2. My original baseline was about 55% on the Bell scale for the twenty or so years when I was sick. I am now 95-100% and can go to the gym once weekly thanks to the antiretrovirals where I can build up quite a healthy sweat and recuperate normally. My VO2 max continues to increase substantially and my CD3-4-8 counts are x2.5 to 3 fold what they were before I started the antiretrovirals. Life is very good. I also take celebrex and multivitamin/antioxidant supplements and I am monitored closely.

This year I feel more confident about the winter than I did in 2014 on just tenofovir and than in 2015 when I was grappling with adding raltegravir. They were bad winters even though the arv’s did help me through better I guess. Winter 2016 can throw at me what it wants however. Now that I have hit the perfect treatment regimen with the antiretrovirals I am sure it will be a better winter. It was worth sticking it out and learning. I thank Dr Judy Mikovits and my physician over in Germany, along with the continued support of a rare and dedicated French doctor over there in Paris. Finally I thank two doctors over there in the UK for listening. I salute them all as men and women of true honour.

Several people wrote to ask what happened with antiretrovirals for my daughter and me. Ali and I plateaued without recovering fully. After the initial improvement, there was really no way to know what was happening. We both had a very mild flare of symptoms for the first six weeks and then a noticeable increase in energy and resilience. We started with AZT and Isentress, then switched the AZT to Viread a year later. Ali stayed on the two drugs for three years, not wanting to rock the boat, as she was doing relatively well. I stopped the Isentress after about a year and half and took Viread alone after that. We both improved during the three years we took antiretrovirals, but we were doing lots of other things documented on this blog. Since there was always the possibility that we might do better without them, eventually we decided we should find out. As it turned out, we didn’t decline when we stopped. I had some trouble coming off Viread, because my always labile blood pressure went crazy when I stopped, twice. Go figure. In the end, I weaned without any sort of noticeable decline. When we started, we were all so hopeful. Judy believed we’d be able to monitor viral load in a year, but it wasn’t to be. Our combined copays were breaking the bank and after three years, with no way to monitor and able to stop, it just didn’t make sense to continue. I would consider antiretroviral drugs again if either of us crashed completely.

My experience treating six very informed patients was similar to what other doctors have reported, 50% improved subjectively. Two had adverse reactions to Viread, including one who had responded initially; both resolved quickly when the drugs were stopped. Two patients continued long term, one on two drugs and one who opted for Viread monotherapy. I didn’t see anything dramatic enough to make me very encouraged though. I had successes with other things that were similar in scale with less risk to the patient and the doctor. However, it’s possible that tinkering with lower doses and less than every day regimens would make the drugs we have more useful for ME/CFS, even if they were designed for a virus we don’t have. Although we do not want to encourage resistance to the drugs, it’s possible that a small dose of a reverse transcriptase inhibitor would work for us. I heard from a doctor in Europe who reported complete recovery in 2011 after nine months on micro dose AZT (20-30mg/day). I don’t know how it turned out long term, but will write to him and ask.

Dr. Michael Snyderman is still doing remarkably well, still able to work in his hematology oncology practice at 75, controlling his cancer like a chronic disease, specifically like AIDS. He has been taking HAART for over 6 years, having twice passed his median survival, meaning there was less than a 25% chance that he’d still be alive by now. I will share his data here in the near future. He is still hoping to collaborate with Roswell Park Cancer Center in his hometown of Buffalo, NY to help patients who have cancer and who have a poor prognosis. The same viruses that infect cancers infect the immune system.  If cancer patients benefit as he expects they will, initiatives can be made with the neuroinflammatory disorders including ME/CFS. There is now a reliable virus detection methodology, ViroCap invented by the Wylies at Washington University and the Wylies are interested in collaborating with this research.

These are leads, the only leads we have. If drugs developed for a completely different retrovirus have some activity against a disease, think what could happen with some attention to the process that is actually occurring. The technology, next generation sequencing, already exists to begin to answer our questions, but the various software platforms that analyze the data are still in their infancy. The metabolomics studies are happening because there is a new toy. There are going to be lots of new toys in the near future. It already didn’t happen by random doctors prescribing off label. Since it wasn’t a slam dunk, it needs to be formally and properly studied.

It is possible that the metabolites that Naviaux et al have identified as a potential diagnostic panel might be useful for monitoring success with antiretrovirals. Dr. Naviaux has answered questions here, stating that he thinks the use of antibiotics and antivirals aren’t indicated and I mostly agree with him, planning to share my thoughts on treatment in a future blog.

I continued to go slowly uphill after I last blogged about ME/CFS almost two years ago, but nothing like a full recovery. I was able to work a little and I was able to ride on the back of a tandem, close to a thousand miles in two years according to Strava, half of it on dirt. Still lots of symptoms, but a life, where once there wasn’t one, plus a way to get endorphins. My recovery was slow after exercise; I felt drained the next day, but nothing like full blown PEM. I was still maintaining the fantasy that someday I would recover fully. But a year ago, while hiking, I twisted my ankle and broke my distal fibula. It was a minor fracture that should have healed without problems in 6 weeks. Instead I got RSD/CRPS (reflex sympathetic dystrophy/complex regional pain syndrome), a very challenging and painful condition. It takes most of my energy just to cope and I’ve been out of commission since it started, able to attend only to my own treatment (HBOT).

After 5 years of managing patients, I had to retire completely. I only worked with a very small number of patients, scattered all over the country, who saw me in person once a year in Hawaii or Arizona, but I got to know them very well, because most of the contact was electronic, day to day, moment to moment even, and that works well for ME/CFS patients. It was enough to learn quite a bit about the spectrum of disease, what works and what doesn’t, especially given that almost everyone I saw had been around the block and came with voluminous records, having failed treatment with the best. I’d like to share my impressions while still fresh, so intend to keep blogging, if I don’t get too beat up over this one ;-).

Today’s song from Les Misérables

Vax To The Future

My last blog, The Myth Of Vaccine Safety, has spread far and wide. I’ve received many thank you’s from parents who were on the fence and looking for information to support what they feel in their guts. I’ve received concerned mail from unvaccinated adults and their mothers asking what they should do now. I’ve heard from doctors also, who realize that they are failing their patients. I’ve gotten thoughtful mail from people on both sides of the divide. Expressing my concern has caused me to be introduced to many vaccine awareness educators. They are all veterans. Some have been fighting for decades. They mostly have painful personal experiences with vaccine injured children. They trusted their doctors and their children were harmed. They are now informed and want others to know what they have learned. Their motives are pure. It is not an anti-vax movement, but an anti vaccine injury movement.

One has to wonder, why this enormous orchestrated response to a not uncommon event? There have been measles outbreaks every year except for 2000. What’s different about this one? Could it have something to do with the impending testimony of William Thompson and the Merck vaccine lawsuits hitting all at once? It’s a good time to spread propaganda. Whipping up fear is good for preserving the myth that our vaccine program makes sense. The media is completely controlled with respect to the controversy. If one were relying on mainstream media for information, you wouldn’t know about the challenges to the integrity and safety of the MMR and other vaccines. You would still be in the comfortable place of believing that the folks at the CDC care about children and know what they are doing. Actually, they do know what they are doing, selling out, even if they are lying to themselves that this is somehow for the greater good.

Or maybe it’s a distraction from recent embarrassments concerning the handling of the Ebola scare and other mishaps, demonstrating an internal problem with both decision making and infection containment. Report: CDC may have exposed a lab worker to Ebola Dec 12, 2014.

Our children are sicker than they have ever been. The American Academy of Pediatrics has failed to protect them. Epidemiologists should be hanging their heads in shame. The vaccine program is failing, due to the toxicity of the formulations and the waning immunocompetence of the population at large. It will only get worse. Millions and millions of parents are questioning what to do, what is safest for their children. It is a very emotional issue with much rational fear, whatever choice is made. It is a parent’s duty to protect their child, over and above the society, especially given the pre-apocalyptic feel of the times we live in. It sure is clear that the media is controlled. Overtones of Orwell’s 1984, or maybe 1933 Germany. Publish the addresses of unvaccinated children on the internet. Jail their parents. Take them away and put them in homes where the parents respect the corporatocracy we live in. Take the licenses of doctors who validate parental concern. After all, what are all these kooks worried about? There were only 434,636 cases of adverse reactions to vaccines reported on VAERS (Vaccine Adverse Event Reporting System) between 1990 and 2014, which is what, maybe 10% of the real number? But the media says everyone knows vaccines are perfectly safe.

So what do we do? What would a sane vaccine program look like? What would you do, if you were appointed vaccine tzar? Here are some obvious ones.

For starters, our government agencies, CDC, FDA, NIH need to be purged of scientists with ties to industry. The corruption needs to stop. Until that happens, we have enough evidence to know that anything they say is suspect. They need to regain our trust.

Vaccine court needs to close, so the pharmaceutical industry is forced to take responsibility for their crappy products. The 7th amendment guarantees a jury trial to all American plaintiffs in civil cases exceeding $25 in value. Doctors need to be liable for negligence also, and if tort reform is required for settlement caps, that should happen.

Pharmaceutical companies need to be accountable for fraud, including criminal charges against responsible individuals when harm has occurred, all the way to the top of the food chain. Government scientists who commit fraud also need to go to jail for their crimes.

Aluminum adjuvants have to go or be drastically reduced in size of dose at once and number of doses total. The combined amount of aluminum a child receives at one time and over the course of the first 6 years with the current products and schedule is far too high. It is probably safe for a baby to receive 5 mcg/kg/day and currently, it is possible to give a sanctioned 1200 mcg dose.

Aluminum and glyphosate (Round Up) act synergistically to do harm, so Round Up has to go, for the greater good. We must learn from our history. There is good evidence that environmental toxins, especially DDT, made polio more likely to cause damage. Here is an excellent article on the subject. The Age of Polio: How an Old Virus and New Toxins Triggered a Man-Made Epidemic.

The rest of what I’m going to say is meant to start a conversation. I am not going to attempt to reference, because this is an opinion piece and single sentences could be the subjects of whole blogs. It is for discussion only. These are my thoughts at this moment. It is an enormous subject with a steep learning curve. I’m reading widely and trying to think beyond an all or nothing approach. Would that the people responsible were having this discussion in an honest way that truly was about public health instead of money. I do want to preface the following remarks by saying that I know very brilliant people who have been studying the history of vaccines for a long time and they disagree with what I’m about to say, with very compelling arguments of their own. Probably everybody on both sides of the controversy will be mad at me by the time they finish this blog;-).

I could have easily written a very convincing blog about how there is no such thing as a safe vaccine. The whole idea is based on a faulty premise, that generating antibodies is all there is to immunity. To get this impermanent vaccine induced immunity, a child’s body has to tolerate adjuvants, animal and human cells, foreign DNA contaminants and adventitious viruses. Here is the Vaccine Excipient & Media Summary again. That is a very bad trade off in the case of diseases that are most often benign or that the individual may never encounter. In the case of the childhood viral illnesses of yesteryear, they may have even filled an important roll in priming the immune system. Also, everyone is always talking about herd immunity. Well what about the health of the herd? We have used vaccines and other medical technologies to prevent the herd from being culled, with a consequent reduction in general health.

If I were making the decision now, I would never allow my new baby to be vaccinated. I think that is the safest thing at this moment to help a healthy baby stay healthy, but I do see problems in the future. Right now, unvaccinated children are fairly protected, because the population is still highly vaccinated. But over time, more and more families will opt out and more adults will be susceptible. Poor children will be forced to endure the full schedule, but Americans are stubborn and don’t like to be told what to do. Already many pockets of intellectualism have schools where fewer than half the children are vaccinated. The handwriting is on the wall, if it is educated parents who aren’t buying it. At some point, the diseases are going to come back with a vengeance. These diseases were terrible when introduced to disease naive populations. That may be what we are looking at when they return. We have two generations of people that are disease naive, except for exposure to the attenuated viruses. Over half of them have a chronic illness already. 20% of the patients from the Disneyland outbreak were hospitalized, rather than the historical figure of 10%, though that may have been about doctors being unfamiliar with the disease.

The later this happens, the more it will hit adults and the elderly and it will happen to a population that is increasingly immune dysfunctional. If I had unvaccinated children, I would be trying to figure out how to let them catch mumps, rubella and chicken pox. The literature suggests that there is a benefit to having these viral infections in childhood. Childhood mumps may protect against ovarian cancer (Mumps and ovarian cancer: modern interpretation of an historic association), exposure to chicken pox after initial childhood infection protects against shingles and measles infection protects against allergic illnesses (Allergic disease and atopic sensitization in children in relation to measles vaccination and measles infection). The live vaccines may confer some of the same benefits, but most likely not as strongly and there are many problems with live vaccines, including persistent shedding of infectious virus. Thinking about the origins of the first live virus vaccines is beyond disturbing, in light of what we now know about retroviruses and other adventitious viruses. Some of the original strains are still being used.

We are all a product of our own experiences. My father was a pediatrician and, in the 1950’s, he was afraid of polio and measles. I remember vividly how excited he was to give me the first oral polio vaccine on a sugar cube. In my memory, I was 5 or 6, so late 50’s. His office was attached to our house and to expose me to the usual childhood illness, he would call me in to kiss a sick patient. In the case of measles, he gave me a gamma globulin shot at the same time, so that I would get “modified measles”. I actually remember him telling me that without it, measles could hurt my brain or hearing. I don’t think he said it could kill me, but he knew that was also a possibility, however unlikely.

I actually still have enough faith in the possibilities of modern medicine to believe that safer, cleaner vaccines could be made, if our best and brightest put their heads together, acknowledging the problems with the current products. We have the technology. Maybe it is just wishful thinking on my part, but if we gave very few, very clean vaccines to only perfectly healthy children from low risk families, perhaps we could hold our gains with the most dangerous diseases, polio and measles. These diseases are absent or uncommon now in the developed world, so children could be vaccinated later, say at age 3 or 4, when the highest risk of autism is past, as long as the population remains highly immunized for the diseases we decide are worth targeting. All other vaccines should be optional, for each person to decide with a knowledgeable doctor who obtains proper informed consent for a medical procedure that carries some risk. Vaccinating almost every child for the sake of eradicating a few diseases hasn’t worked and many people have been harmed. Children need to be stratified by risk. One size does not fit all. Trying to vaccinate all adults to provide true herd immunity for these diseases would be a disaster of immense proportions, but that is what your government has in store for you: National Adult Immunization Program Feb 5, 2015. They’ll have to tie me down.

Here are the current bloated vaccine schedules: Birth to 18 years and Adults. Once you let go of the idea that these shots are good for you, these schedules are pretty disturbing.

The risk, benefit considerations for vaccines against bacterial pathogens are different. Childhood viral illnesses are the subject of the current debate, but it is worth noting that vaccine failure is much higher with bacterial diseases, because the bugs adapt and colonize the vaccinated person, making them more likely to spread the disease. Acellular pertussis vaccines protect against disease but fail to prevent infection and transmission in a nonhuman primate model.

Another important consideration not being talked about much with all the worrying about unvaccinated children being little typhoid Marys, but viral shedding by vaccinated children is dangerous for immunocompromised people, children and adults. Make sure you take a look at: The Emerging Risks of Live Virus & Virus Vectored Vaccines: Vaccine Strain Virus Infection, Shedding & Transmission.

In our new, safer vaccination program, it would be better to forgo the use of live vaccines completely, if possible, as we decided to do in this country in 2000, when we switched to inactivated polio vaccine, since the only cases of polio were coming from the vaccine. The live virus vaccine is still being given in the 3rd world. India has an epidemic of Acute Flaccid Paralysis just as they are being declared polio-free: The Vaccine Myth of “Polio-free” Status – Polio Vaccine Caused 53,000 Paralysis Victims in India Last Year.

Unfortunately for two generations of vaccinated people, they are dependent on more vaccines to keep these diseases at bay. As usual, the pharmaceutical companies sold everybody a bill of goods, creating lifelong customers. Healthy unvaccinated adults whose mothers hoped they would get the diseases in childhood will have tough choices to make going forward. Everyone should be demanding safer, cleaner, single vaccines. There are over 300 vaccines currently in the pipeline. How many will be mandated? It is big money. It is shaping up to be quite a fight.

In Japan, the MMR was banned in 1993, due to excessive complications, 1 in 900 children had adverse reactions. Instead they chose to give measles, mumps and rubella vaccines singly. In the US, there is no single measles vaccine. That might be a good choice for some people right now. Why is that not a choice? Maybe instead of the attenuated rubella vaccine in the MMR, young girls should be offered an exposure to wild type virus, preferably in the form of a kiss.

The Myth Of Vaccine Safety

A few days ago, The Washington Post published an op-ed piece by a medical ethicist who thinks that all doctors who have concerns about vaccines should lose their licenses. Last week, it was parents who don’t vaccinate their children should be jailed or sued. There are case reports where not vaccinating has been used as proof of neglect for CPS to remove children and terminate parental rights. Whatever you think about vaccination, think hard before you endorse the idea that the government should be able to mandate a profitable but invasive medical procedure without informed consent. This is a very dangerous precedent to set and one you may not be happy about when vaccines are mandated for adults to protect our “herd immunity”. It is not about the measles. It is about your freedom to choose what goes into your body and your child’s body.

Although we keep hearing from the media and the medical establishment that vaccines are unquestionably safe, the supreme court has deemed them “unavoidably unsafe” as recently as 2011. Pharmaceutical companies are indemnified by the government against liability and pediatricians also cannot be sued for vaccine injury. Rather, there is a special vaccine court that compensates the very few patients who can prove their injury beyond a shadow of a doubt. The National Vaccine Injury Compensation Program has paid out over 3 billion dollars to date.

We keep hearing about the overwhelming proof that vaccines and the MMR in particular is safe. Anyone who questions this is being ridiculed. Concerned parents are stupid and concerned doctors don’t understand the science. Well, here is the science, from the most recent Cochrane Review of the entire literature on the subject. Cochrane Reviews are systematic reviews and meta-analyses which interpret the research and are generally recognised as the highest standard in evidence-based health care.

Cochrane Database Syst Rev. 2012 Feb 15;2:CD004407. doi: 10.1002/14651858.CD004407.pub3.

Vaccines for measles, mumps and rubella in children.

Demicheli V1, Rivetti A, Debalini MG, Di Pietrantonj C.

Partial Abstract

BACKGROUND:

Mumps, measles and rubella (MMR) are serious diseases that can lead to potentially fatal illness, disability and death. However, public debate over the safety of the trivalent MMR vaccine and the resultant drop in vaccination coverage in several countries persists, despite its almost universal use and accepted effectiveness.

OBJECTIVES:

To assess the effectiveness and adverse effects associated with the MMR vaccine in children up to 15 years of age.

SEARCH METHODS:

For this update we searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2011, Issue 2), which includes the Cochrane Acute Respiratory Infections Group’s Specialised Register, PubMed (July 2004 to May week 2, 2011) and Embase.com (July 2004 to May 2011).

AUTHORS’ CONCLUSIONS:

The design and reporting of safety outcomes in MMR vaccine studies, both pre- and post-marketing, are largely inadequate. The evidence of adverse events following immunisation with the MMR vaccine cannot be separated from its role in preventing the target diseases.

The full paper is behind a paywall, but I’ve read it in its entirety. The authors screened approximately 5000 papers, found 139 possible for inclusion and ended up with 31 papers that met their criteria. They rated 26 of 31 as having high or moderate risk of bias, most commonly selection bias. They concluded that there was no data to support efficacy, “We were disappointed by our inability to identify effectiveness studies with population or clinical outcomes. Given the existence of documented elimination of targeted diseases in large population by means of mass immunisation campaigns however, we have no reason to doubt the effectiveness of MMR.” So we believe it, because we all saw it happen, not because there is a study which shows it to be true.

They state that there is no evidence for an association between MMR and autism, but the only included study which could possibly answer the question, comparing vaccinated to unvaccinated children, is Madsen 2002. One of the co-authors of that paper is Poul Thorsen, on the OIG’s most wanted list for fraud. Thorsen is a co-author of 22 papers on autism and 5 papers on vaccine safety that still stand and are widely referenced by other authors. Even if including a paper co-authored by Thorsen doesn’t bother you, their note on the Madsen study concludes: “The follow up of diagnostic records ends one year (31 Dec 1999) after the last day of admission to the cohort. Because of the length of time from birth to diagnosis, it becomes increasingly unlikely that those born later in the cohort could have a diagnosis.” They noted the general absence of studies with unvaccinated controls. The reason given is that it would be unethical to have unvaccinated controls.

DeStefano 2004 is also included. One of the authors of that paper was reportedly granted official whistleblower status and immunity, alleging that the authors manipulated data to cover an association between the vaccine and autism in African American males vaccinated before the age of 36 months. Those authors are collectively responsible for a lot of the “indisputable” science we are hearing so much about. From a few months ago: The Fox Guarding The Henhouse.

Here is a compilation of abstracts, 86 Research Papers Supporting the Vaccine/Autism Link, but the media keeps telling us there is no evidence that vaccines can cause autism.

Why has there never been a well designed study comparing vaccinated to unvaccinated children? Rumor has it that Amish children don’t get autism. Why isn’t the CDC doing everything it can to figure out if that’s true and, if so, why? The NIH just canceled the National Children’s Study after wasting over 1.2 billion dollars.

Vaccines have not been a cause célèbre for me. My interest grew from the realization that vaccines grown in murine and avian cells contain infectious animal retroviruses that are supposed to be unable to cross the species barrier, but the evidence that they can’t is rather flimsy. Here are blogs I wrote about vaccines and biologicals in early 2011 when I was considering the risks of attenuating viruses in animal cells and realizing the temporal relationship between the first yellow fever vaccine in 1932 and the first ME/CFS cluster in 1934, as well as the first cases of autism described by Leo Kanner in 1935.

This led to thinking about how vaccines are made, what exactly is in them, the evidence for safety/efficacy and their possible impact upon various immune profiles. The furthest I have ever gone as a doctor is to say that I don’t think that ME/CFS patients or their offspring should be vaccinated. I don’t think I’ve ever explicitly said publicly that autistic children shouldn’t be vaccinated, but I will now, as it seems a no brainer to me, even if you don’t believe that vaccines can cause autism. Neuroimmune disease patients are in a state of persistent immune activation which needs to be reduced with anti-inflammatory strategies. Vaccines do the opposite, on purpose. In addition, they are less likely to be effective in the presence of a preexisting inflammatory state.

The argument goes, thimerosal was removed from vaccines 10 years ago (except for the multi-dose vial flu shot), but the rate of autism has continued to climb, so vaccines are safe. This is scientific sleight of hand, not science. It is the type of argument used commonly by our so called experts to brainwash people into concluding that vaccines are all safe and any number of vaccines can be given with impunity. We ruled out one thing, so it’s all fine. Data by country shows a strong correlation between more vaccines before the age of 1 year and higher infant mortality. The US is 34th in the world and gives the most vaccinations: Infant mortality rates regressed against number of vaccine doses routinely given: Is there a biochemical or synergistic toxicity?

The US childhood immunization schedule requires 26 vaccine doses for infants aged less than 1 year, the most in the world, yet 33 nations have better IMRs. Using linear regression, the immunization schedules of these 34 nations were examined and a correlation coefficient of 0.70 (p < 0.0001) was found between IMRs and the number of vaccine doses routinely given to infants. When nations were grouped into five different vaccine dose ranges (12–14, 15–17, 18–20, 21–23, and 24–26), 98.3% of the total variance in IMR was explained by the unweighted linear regression model. These findings demonstrate a counter-intuitive relationship: nations that require more vaccine doses tend to have higher infant mortality rates.

Here’s something not being discussed in the measles/vaccine debate. Take a look at the current table of vaccine excipients: Vaccine Excipient & Media Summary. Notice how many contain aluminum, a known neurotoxin, implicated in ASIA (autoimmune syndrome induced by adjuvants). Here is a PubMed search which brings up 75 papers since 2008, specifically on this subject. There are a few hundred on aluminum and neurotoxicity. Here are two papers about ASIA and CFS/fibromyalgia, one suggesting a link with autism and a recent review paper about aluminum adjuvant biopersistence and delayed neurotoxicity:

The FDA says that the amount of aluminum in vaccines is GRAS (generally recognized as safe). The argument goes that since children are exposed to aluminum in the environment anyway, giving them a little more in their vaccines is safe. Then there is MSG, formaldehyde, animal and human cells, adventitious viruses, the list goes on and on, each deserving of concern in its own right. The GRAS designation should be another blog entirely…

From the CDC website: “In the decade before 1963 when a vaccine became available, nearly all children got measles by the time they were 15 years of age. It is estimated 3 to 4 million people in the United States were infected each year. Also each year an estimated 400 to 500 people died, 48,000 were hospitalized, and 4,000 suffered encephalitis (swelling of the brain) from measles.” That’s roughly a 0.1% risk of encephalitis and there is a great deal of literature showing that high dose vitamin A at the onset of illness mitigates that risk significantly. The most recent numbers show that the current risk of autism, aka encephalitis/encephalopathy, is 20 times that, higher in some places. We are faced with an epidemic of allergic, neuroimmune and autoimmune disorders. The prevalence of chronic illness in our children is greater than 50% (2011). 16% have a developmental disability (2008). 11% have ADHD (2011). 2% have autism (2013). It is an emergency. Measles is not. I am not saying that vaccines are the only cause of this disaster, but there are many reasons to think they are contributory. Instead of mandating more vaccines, we should be trying to understand which children are at risk: Personalized vaccines: the emerging field of vaccinomics.

Being concerned about vaccines is not the same as discounting the dangers of infectious diseases. Not trusting the CDC and the pharmaceutical companies is not anti-science, but prudent, since they have earned our mistrust in spades. They have lied and been wrong so many times. Why believe them now? The drug companies regularly pay out billion dollar settlements for fraud convictions. Merck is currently embroiled in lawsuits brought by whistleblowers: Massive Fraud In Merck MMR Vaccine Testing. The incestuous relationship between the CDC and the vaccine manufacturers is epitomized by Julie Gerberding, former director of the CDC, now head of vaccine safety at Merck.

There are a few egregious examples that make it clear how little the vaccine program is worrying about the health of children.

1. Giving newborns who have no risk of infection a hepatitis B shot is insane. The series often wears off by the time the child is at risk. Here is a paper showing evidence of an association between the hepatitis B series and autism: Hepatitis B vaccination of male neonates and autism diagnosis, NHIS 1997-2002.

Findings suggest that U.S. male neonates vaccinated with the hepatitis B vaccine prior to 1999 (from vaccination record) had a threefold higher risk for parental report of autism diagnosis compared to boys not vaccinated as neonates during that same time period. Nonwhite boys bore a greater risk.

2. Chicken pox was a benign illness when contracted in childhood. This vaccine is another example of setting people up for waning immunity when they are older. Also shingles used to be prevented by being around infected children, but now a zoster vaccine is needed for older adults to keep the virus in check, even if they had the natural infection. The attenuated virus can cause shingles just like the wild type. The incidence of shingles has risen since the vaccine was introduced, in children and adults, though there is data suggesting this trend was already in effect from reduced immune competence in the general population prior to introduction of the vaccine. Decreased varicella and increased herpes zoster incidence at a sentinel medical deputising service in a setting of increasing varicella vaccine coverage in Victoria, Australia, 1998 to 2012. Here is a paper stating that the Varicella vaccination program is a failure. Review of the United States universal varicella vaccination program: Herpes zoster incidence rates, cost-effectiveness, and vaccine efficacy based primarily on the Antelope Valley Varicella Active Surveillance Project data. Safety data for the Varicella vaccine is even thinner than for the MMR and the excipients are particularly noxious. if we are going to decrease the number of vaccines we give to our children, this one might be a good place to start. Every adult who was vaccinated will need boosters for life, but if we let the wild type disease come back in children, we might also get rid of the need for the zoster vaccine.

3. Your government wants you to have a flu shot, even though it admits that this year’s shot doesn’t work. The current CDC recommendation is “Everyone 6 months of age and older should get a flu vaccine every season.” Pregnant women, sick people, no matter the health status of the patient. Only people allergic to the shot or one of its components shouldn’t get it. Even this year, everybody should get it, because gosh, so much money was spent making all those millions of shots and who knows, they might help a little. And they are perfectly safe, except that they can cause wheezing, Guillain Barré Syndrome and have not been studied in immunocompromised persons. There are several choices for the flu shot, but here’s an example of the safety data. The FluMist package insert: “Data on safety and shedding of vaccine virus after administration of FluMist in immunocompromised persons are limited to 173 persons with HIV infection and 10 mild to moderately immunocompromised children and adolescents with cancer.” 10 immunocompromised children. How many doses went up the noses of children with preexisting conditions? And then there is this: Live Attenuated Influenza Vaccine Enhances Colonization of Streptococcus pneumoniae and Staphylococcus aureus in Mice.

The people making these decisions don’t care about your children. They are lying to you about the quality or even the existence of safety data.

I am the last one to say that the question of whether to vaccinate or not is a simple one. I delayed vaccinating my children until they were 3 months old and I didn’t give them hepatitis B shots until later. They had the chicken pox at 5 years and 6 months old, so my son may not be immune. I allowed them to be given hepatitis B shots at school when my daughter was 9 and my son was 4. He got very sick after the first dose, missed school for 2 months and I never allowed him to be vaccinated again. He lived in a dorm at college for 2 years and not a day went by that I didn’t worry about the decision to forgo the meningococcal vaccine. He is now doing research in Okinawa for a semester and I worry about Japanese encephalitis, for which there is a vaccine. But he has a mother and a sister with ME/CFS, a father with POTS and other things in his risk profile that worry me with respect to vaccines. Without a crystal ball, you can never know what is the safest thing to do. If you guess wrong, either way, it is 100%.

Resource: National Vaccine Information Center

Suggested reading:
Vaccine Epidemic by Louse Kuo Habakus and Mary Holland
Dissolving Illusions by Susanne Humphries and Roman Bystrianyk
Plague by Kent Heckenlively and Judy Mikovits
The Big Autism Cover Up by Anne Dachel

Recommended documentaries:

Cactus Fruit

Last October, after three months on the Wahls paleo diet, I recovered my ability to benefit from exercise. I had been unable to exercise without payback for nine years, since starting treatment for tick borne diseases, a decade into my illness. That most intangible switch between can’t and can suddenly flipped back and aerobic exercise became possible again. No drugs involved. Just a clean, nutrient dense, low carbohydrate diet. Lots of healthy fat.

In February, the “flu” went through our house. I was down with it for about 6 weeks. Then I pushed through and went to Tucson to see patients in April. My upper respiratory tract symptoms came back on my second day home and a week later my husband got sick also. Then, in quick succession, I had a UTI, sinusitis and a salivary gland infection requiring back to back courses of antibiotics.

My mood crashed also. It’s really tough to be very active for a while and then find yourself back in the pit. When I was emerging from years of hell, I felt amazingly wonderful, even though I still had lots of symptoms. Conversely, after a period of very few symptoms, I had a lot of trouble coping with symptoms that would have been no big deal when I was sicker.

I don’t usually catch stuff. I’d been experimenting with higher doses of Vitamin D after reading some studies about using higher doses in MS patients for anti-inflammatory effect. In hindsight, the dose I was taking was probably too immunosuppressive for me, though it is cited as safe in several recent papers. When I went back to a lower dose, the infections stopped. I didn’t try this experiment on anyone but myself. If you do try higher doses of Vitamin D, follow levels and be careful. Upward target level creep is happening in the literature, as people try to use Vitamin D as a drug, not just a preventative. For me, 5000 iu daily seems OK and my 25(OH)D level on that dose is about 50 ng/mL. More was not better, but I am not saying that it couldn’t be for someone else. The word isn’t in yet as to how to supplement Vitamin D optimally in the setting of neuroimmune illnesses. Natural sunlight is no doubt the best way. The most powerful ways to heal are provided by Mother Nature, not a pharmaceutical or neutraceutical company.

Despite my fear that the gig was up for good this time, gut torn up again by antibiotics, I started the climb back to wellerness. I was really weak when I got back on the bike, but I improved faster than the first time and by early August had surpassed my previous level. Anthony and I spent our 26th anniversary camping on the Conejos River in southern Colorado, and went fishing in our canoe on Platoro Reservoir, same as our 25th. Last year, I needed a special seat on the floor of the canoe with a backrest. This year, I could help paddle. Last year, I couldn’t ride a bike. This year, we rode uphill on a fire road for an hour, from 9000 to almost 11,000 feet, before a long, exciting descent. Then later, the same day, we went fishing. If you have been reading my blog for a while, you will recall, I used to need a wheelchair to get through an airport. Now I could jog to the gate if I were late. Exercise is my go to “treatment” when I am feeling poorly, which I still do, not infrequently. I am not cured, by a long shot, but I’m not at the mercy of the illness. I can fight back.

I still attribute my recovered exercise ability to the Wahls paleo diet. I’m no longer completely adherent though. My intake of vegetables is much increased from prior, but I’m no longer force feeding. I eat some rice and quinoa and a few legumes. I eat bananas, apples and pears, though Wahls excludes them. I’ve learned that any dairy is problematic, except butter, but I can get away with a bite of gluten, at least as far as I can tell. Properly produced eggs are my friend, though I haven’t tested for egg allergy or tried eliminating them. My focus has become not only what I eat, but what I avoid, especially toxins and GMOs. We are paying attention to what cookware we use and what we store food in. Bone broth is a staple in our household. My daughter makes it with fresh turmeric root and seaweed. I love my green drinks. We are having an adventure with fermenting. We are learning what edibles grow naturally around us. I am going hunting for prickly pears with my daughter and grandchildren in a little while, planning to make prickly pear, crabapple butter. It will probably be terrible:-), but the walk and the project will do us good.

We are no longer eating as much meat as we were when we first went on the diet. We are a large family and bought a whole cow from a local ranch. It was definitely different to buy it alive and sign off on its slaughter. For about six months, we ate a large amount of very high quality, grass fed, grass finished beef. After that, two healthy members of the family had serious GI complications, specifics of which I won’t share to protect their privacy. Anecdotal of course, but we decided to back off on the red meat. We are eating more fish, even though finding clean fish is so problematic, and having more vegetarian meals.

I stopped writing, not because I was too sick, but because I was too negative. Existential crisis. Jaded and cynical. Disgusted with how broken and corrupt the system is and how hopeless it seems that our current suicidal trajectory can be changed in time. We are about to be a failed experiment, on a global scale. Why write about it? Time to eat, drink and be merry. We have the technology to figure out what we need to do, and not do for neuroimmune illnesses, but no cavalry is coming over the hill. The game is rigged. All greed and special interests. What gets studied, and then published, is tightly controlled. Obvious studies that challenge a prevailing paradigm will not get done (vaccinated vs unvaccinated children or the family study we tried to do once on this blog). Scientists who dare to depart from the mainstream paradigm are discredited (Mikovits and Ruscetti). Yet real live fraud within a government agency that most likely harmed children is covered up by the media (see my last blog). The billions of dollars paid out by the drug companies for their frequent gigantic frauds make the news, but their stock prices remain strong. Those billions are just the price of doing business. And they are indemnified in the case of vaccines, so that’s a real gravy train. The medical profession is completely asleep at the wheel when it comes to the causes of or solutions to complex chronic diseases. Safe treatments that can’t be patented, like home oxygen, will never be studied. So their treatments now do more harm than good. Conventional doctors push dangerous drugs. Alternative doctors push expensive tests and supplements. Depressed yet? I certainly am, if I think about it too much. So I won’t. I’ll go on a hike with family at the end of a magnificent monsoon season in the high desert, pick prickly pears and be grateful I can walk. Time to find some heavy gloves.

Stay tuned for an update from Dr. Michael Snyderman.

By Way of Sorrow –  Cry, Cry, Cry

The Fox Guarding The Henhouse

It’s been quite a while since I’ve had the urge to blog. Throughout the years when I was writing regularly, even when very angry, I always had a positive feeling that awareness was growing and answers would be found. However, I’ve lost that feeling in a growing realization of just how corrupt the people we need to save us actually are. I haven’t wanted to write from a place of negativity, because God knows there’s already enough bad news, but the recent CDC whistleblower scandal, dismissed by the mainstream media, has given me twitchy fingers again.

As far as I can tell from the various sources on the internet, Brian Hooker, PhD, an engineer, autism dad and board member of an organization called Focus Autism, after years of trying to exercise his Freedom of Information Act rights, managed to obtain the original data set for a study published by the CDC in 2004: Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta by DeStefano et al, 5 authors including one William Thompson. Apparently, late last year, Thompson contacted Hooker and in a series of conversations confessed privately to fraudulent manipulation of data to cover-up a 240% increase in autism in African American males who were given the MMR vaccine on time compared to those vaccinated later. However, the decision was made to use only children with a valid birth certificate, thus eliminating enough black children to dilute the increase to below statistical significance. Some email by Thompson expressing his concerns at the time have also come to light. All of this is very well covered on the Age Of Autism website.

Brian Hooker recently published a paper reanalyzing the original data and showing the association: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data. In a YouTube, Dr. Thompson was outed, initially with his voice disguised electronically, then a couple of days later, without the distortion, including this quote, “Oh my God, I did not believe that we did what we did, but we did. It’s all there… This is the lowest point in my career, that I went along with that paper. I have great shame now when I meet families of kids with autism, because I have been part of the problem.” 

Despite a chillingly complete black out by the mainstream media, Dr. Thompson issued a statement published on his lawyers’ website, which included this admission of guilt. “I regret that my coauthors and I omitted statistically significant information  in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.” Then the predictable backpedaling. He believes vaccines have saved millions of lives, blah, blah, blah. What can he say to ameliorate his admission that he is personally responsible for publishing disinformation, a lie, when the truth could have spared how many black boys from relentless suffering? Thousands? Tens of thousands?

According to the CDC website, Coleen Boyle, the senior author of the paper in question went to work at the CDC in 1984 and now “serves as Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD)”. She was appointed to this position in 2004, the same year the DeStefano paper was published. It was on her watch, working as a visiting researcher in Boyle’s department, that Danish researcher Poul Thorsen, was financed by the CDC, in part to study the relationship between autism and vaccine exposure. 22 publications come up when PubMed is queried with his name and “autism”, two in high impact journals (Pediatrics and NEJM) purporting to prove that thimerosal and the MMR vaccine don’t cause autism. In 2011, he was indicted on 22 counts of wire fraud and money laundering for diverting over a million dollars of CDC money to his personal accounts. His papers have not been retracted. In fact, he is still publishing. Here is his listing on the Office of Inspector General’s Most Wanted Fugitives list (scroll down the page). The combined efforts of these fraudsters constitutes much of the literature on vaccine safety.

If they had been honest, how might the world be different today? Might vaccinations have been questioned in an even broader context than black boys with autism? What about the combined effect of all vaccines on innate immunity, in not just black children, but all children? What about children with ME? What about children with autoimmune diseases? 5 authors took responsibility for that paper. How many papers did they publish collectively which state unequivocally that vaccines are safe (even though the various package inserts state pretty clearly they are not)? More than half of our children have a chronic disease. Is this one of the reasons why? I say one of the reasons, because there are so many confounders, so many ways our children have been poisoned in our toxic world, in addition to vaccines. Since some unvaccinated children are autistic, does that mean that vaccines don’t cause autism? Of course not, but that is what our vaccine experts would have you believe. 

Data falsified, drug companies indemnified from consequences, media outlets proving beyond a shadow of doubt that their talking heads are shills for industry, eye witnesses of the damage done discredited as nutcases or worse. It can only be called a conspiracy.

I have no expectation that this will play out in a just manner. First there was a media black out, then Dr. Hooker’s paper was removed from the web, with a statement that it might be incorrect or endanger the public; it is back up today with a disclaimer that it is a troubled paper. CNN finally reported, concluding vaccines are absolutely safe, except in the rarest of cases, and people who decide not to vaccinate are the problem. The only other mainstream media report seems to be Time Magazine, a few days ago. It is behind a pay wall, but here is the headline and subtitle, “Whistleblower Claims CDC Covered Up Data Showing Vaccine-Autism Link: The claim, however, may just be more unsubstantiated fuel from the anti-vaccination movement.” That sounds unbiased, doesn’t it?

So there you have it, folks. Even when the evil doing is exposed, actually admitted, there is no interest. Dr. Hooker and Dr. Thompson will both be discredited in different ways. Dr. Hooker will be called a liar and not competent to evaluate the data because his degree isn’t in statistics. Dr. Thompson will be deemed unstable and his guilt delusional. Whatever it takes. The vaccine program is a sacred cow. It is thought of as the one unequivocally good thing modern medicine has accomplished. Anyone who questions that meme is an antivax crazy person. All the parents that witnessed their children regress into autism from their vaccines are too ignorant to understand what really happened.

The doctors administering the shots have been rendered comatose with explicit instructions not to worry about all the harm they are doing, since, like the drug companies, they are indemnified by the National Childhood Vaccine Injury Act of 1986. Kangaroo Court, created by necessity, because vaccines are dangerous, but designed to perpetuate the myth that they are not. If we made doctors responsible for the bad outcomes, things would change in a hurry. If every doctor had to consider the merits of each shot, what is actually in the shot and ask themselves, what is the risk to the particular child sitting in front of me right now if I do or don’t give it, what would happen then? I can feel pediatricians shuddering from here. At this moment, how many pediatricians are even aware of exactly what is in each of those shots or how they are manufactured? Do they know that some of them contain adventitious replication competent retroviruses and pieces of retroviruses, when we know only too well that retroviruses have a propensity to recombine and rescue one another? Let’s not forget the Recombinant origin of the retrovirus XMRV and its riveting sequel, Recombinant origin, contamination, and de-discovery of XMRV.

The fact that good things happened because of the vaccine program for small pox and polio in the mid 20th century does not justify what has come since. And just because good things happened, doesn’t mean bad things didn’t happen too. Millions of people were infected with SV40 for example; that mishap is acknowledged, but any possible adverse consequences denied. The retroviruses that inevitably were present in the first yellow fever and oral polio vaccines aren’t even acknowledged. Even now, when we have the technology to know what we are doing, we are still doing it. For example, we know that live attenuated virus vaccines grown in chick embryo fibroblasts contain avian leukosis virus and other retroviral nucleic acid sequences, but our CDC scientists have determined it is safe to inject these viruses and pieces of viruses into babies, in order to prevent diseases which, in fact, most individuals would be better off getting naturally. Here is a paper where they found bad stuff, but conclude it is safe anyway. Viral Nucleic Acids in Live-Attenuated Vaccines: Detection of Minority Variants and an Adventitious Virus.

Mutations and minority variants, relative to vaccine strains, not known to affect attenuation were detected in OPV, mumps virus, and varicella-zoster virus. The anticipated detection of endogenous retroviral sequences from the producer avian and primate cells was confirmed. Avian leukosis virus (ALV), previously shown to be noninfectious for humans, was present as RNA in viral particles, while simian retrovirus (SRV) was present as genetically defective DNA. Rotarix, an orally administered rotavirus vaccine, contained porcine circovirus-1 (PCV1), a highly prevalent nonpathogenic pig virus, which has not been shown to be infectious in humans. Hybridization of vaccine nucleic acids to a panmicrobial microarray confirmed the presence of endogenous retroviral and PCV1 nucleic acids. 

The “extensive proof” that avian leukosis virus (ALV) does not pose a threat to human health consists of three small studies, published from 1999 to 2003, all by the CDC and all by the same senior author, W. Heneine. Interestingly, his name also appears on the Lipkin XMRV study. His 1999 paper said,Our data indicate that the sources of RT activity in all RT-positive measles and mumps vaccines may not be similar and depend on the particular endogenous retroviral loci present in the chicken cell substrate used.”, but PCR of PBMC’s on 33 children after measles and mumps vaccines were negative, so they concluded this should “provide reassurance for current immunization policies.” In 2001, 206 recipients of the MMR were negative by PCR for 2 known avian retroviruses and had negative serology to an antibody developed specifically for the study. In 2003, studying adventitious retroviruses contaminating 3 brands of the yellow fever vaccine, they found there were 3 kinds of RT, more than expected from the 2 retroviruses they knew to be there; nevertheless, they concluded, “None of the samples were seropositive by an ALV-E-based Western blot assay or had detectable EAV or ALV-E RNA sequences by RT-PCR. YF vaccines produced by the three manufacturers all have particles containing EAV genomes and various levels of defective or nondefective ALV-E sequences. The absence of evidence of infection with ALV-E or EAV in 43 YF vaccine recipients suggests low risks for transmission of these viruses, further supporting the safety of these vaccines.” 282 cases from the millions of doses given where they couldn’t find evidence of anything shortly after inoculation, with technology that is now 15 years old? Are we comforted yet?

This work isn’t science. It is religion. There is no room for the precautionary principle here. Vaccines are good. Necessary. Period. No need to discriminate which babies might be at greater risk for complications, because we need our herd immunity. The needs of the many outweigh the needs of the few. Only it isn’t just a few anymore. That logic might make sense if the health of the species had actually improved during the period in question, but it is quite the opposite. More than half of everyone in the U.S. has a chronic disease, including our children. Our infant mortality rate is 34th in the world, despite, or perhaps because, of the fact that we give more vaccine doses before the age of 1 than the 33 countries ahead of us. Take a look at this paper: Infant mortality rates regressed against number of vaccine doses routinely given: Is there a biochemical or synergistic toxicity?

I am in no way saying that vaccines are to blame for everything, just that the vaccine program is one of a long list of high risk things we have done blindly, uncritically, while the health of our species has dramatically deteriorated. But what can we expect when the fox is guarding the henhouse?

Recovery In Neverland

Even though the last blog was the least controversial I’ve ever written, it managed to ruffle a few feathers. On the one hand, it couldn’t possibly be as simple as a diet cure and, on the other, it is too hard to implement, especially if you are sick and short of money. And what about retroviruses?

I am not cured. It is a relapsing, remitting illness and I am experiencing a remission. I am not asymptomatic, but much, much better. My husband and I have ridden our tandem 180 miles so far this month. Our rides are quickly getting longer, faster and more challenging. My husband said I have never worked harder. I don’t know if that’s because I want it more, or because I finally fixed my rubidium deficiency;-). No doubt a real doctor would say I finally decided to get off my ass;-). But anyone with real knowledge of the disease knows what a profound change has to occur for an ME patient to return to exercise after nine years.

Ali also has noticed improvement with respect to her physical abilities. She went to an hour long yoga class a few days ago with no PEM and expects to continue. She is living away from me, something neither of us thought possible just a few short years ago.

It isn’t just the diet. The diet happened to us in the context of a slow recovery over a number of years during which several treatments were contributory, all documented on this blog. Antiretrovirals, oxygen, Deplin, at one time Actos, at another modified Meyer’s cocktail IVs, metformin and Prometrium for Ali, prior dietary modifications and ever more awareness of the importance of biotoxin avoidance. I believe all of these things have helped to tip the balance towards recovery. When you are treating an incurable disease, it is necessary to look for therapeutic synergy.

As to the diet being hard, some of the biggest things aren’t too hard. A daily smoothie, big plates of organic greens, bone broth from clean grass fed animals. Buy organic. Try your local CSA (community sponsored agriculture) who sometimes deliver. Try eliminating gluten and dairy for three months. Consider nutrient density before eating something. Don’t try to change everything at once. Pick one thing and do that, then add to it. It is more expensive to eat this way. If it is too expensive, I am thinking the food is more important than supplements, on which most patients spend a lot of money. I am increasingly suspicious of things that come in pill form, including supplements.

One of the really interesting things that has happened to me on the Wahls diet is I am not tolerating B vitamins at all, finding them overactivating and sleep disrupting, after taking Deplin for years. I presume this is because I am getting what I need from my food. Can we infer from this that my methylation status has improved? Take a look at the numbers midway through this article by Dr. Wahls: Maximizing Nutrient Density for the Modern Day Hunter-Gatherer.

In addition to a relatively small number of known required nutrients, whole food contains thousands of compounds which work together in ways we do not begin to understand. Supplements supply an excess of a single nutrient. In the case of L-methylfolate, the idea is to overcome an enzyme deficiency by supplying the activated form of the nutrient folic acid to prime the pump of essential metabolic pathways. The deficiency occurs more often in the presence of certain genetic mutations, or SNPs, but remember, the problem is most often not caused by the genetic make-up of the individual, who was healthy once, but by epigenetic changes that have occurred. Also remember that methylation silences retroviruses.

I still think retroviruses are at the bottom of it, endogenous and/or exogenous. I will prevail upon Dr. Snyderman, who has lots to say on this subject, to give us an update in the near future. There is a growing body of literature to support the association of activated HERVs with various diseases. There are even a few intrepid researchers still pursuing novel retroviruses in chronic disease, working at the edge of our current understanding. Andrew Mason‘s betaretrovirus associated with primary billiary cirrhosis, clinical trials with antiretrovirals ongoing, Sidney Grossberg‘s JHK gammaretrovirus which he has identified in CFS patients, and Hervé Perron‘s MSRV, particles from HERV-W transcripts, with an immunopathogenic envelope protein, severity of illness correlates to viral load, replication competence still unknown. “Most HERVs are unable to replicate but MSRV expression associated with reverse-transcriptase activity in MS would explain reported DNA copy number increase in MS patients.” from The DNA copy number of human endogenous retrovirus-W (MSRV-type) is increased in multiple sclerosis patients and is influenced by gender and disease severity.

The possibility that animal retroviruses are the root cause of the enormous increase in chronic neuroinflammatory illnesses, autoimmunity and cancer in our modern world has not been ruled out, just because the particular sequence called XMRV has been put to bed. In fact, in figuring out where XMRV came from, created in a lab using techniques in use every day all over the world, a can of worms has been opened. How many times have similar organisms been created? How many cell lines commonly in use produce infectious virus that can spread airborne through a clean lab, as XMRV does.

Given that retroviruses recombine and rescue each other, that under certain conditions HERVs activate to produce viral product, that the environment is full of the very toxins used to amplify retroviruses in the lab and that high risk biotechnologies have offered up so many chances for new retroviruses to infect humans, it seems more likely than unlikely that it has happened, and more than once. After all, we have been injecting adventitious retroviruses into people for 80 plus years in combination with other live viruses. We think nothing of fusing human and mouse genetic material to produce monoclonal antibodies that are given to immunocompromised people. Passaging human tumor tissue through immunodeficient mice, gene vector technology, genetically modifying animals to produce human proteins for IV administration (Atryn) are all very high risk things to do. Lots and lots of chances. Hubris allowed it. Money drives it. How could the legacy of all that science be that half of everybody has a chronic illness, including children? Who wants to know that?

Injected into monkeys, XMRV causes a low level latent infection, which isn’t communicated by transfusion. However, Dr. Mikovits found other sequences in patients besides XMRV. Here is a slide from her recent lecture at Dr. Enlander’s conference showing just that.

The Exotic Biology of XMRVsfinal slide 10

Of course, she doesn’t have her notes, so all of the unpublished work she did is lost to us. Meanwhile, the WPI continues to suck up a big chunk of the government dollars spent on our disease, while their co-founder awaits jail for his felony convictions.

$450,000 of taxpayer money was spent on the specimens collected for the Lipkin study, which was negative, as expected. The good news was that Dr. Lipkin was going to use those specimens to answer some questions. I guess he couldn’t get funding. Instead those specimens have gone to Dr. Peterson, who is raising money to look for evidence of arthropod borne disease, even though the collection criteria for the specimens specifically excluded Lyme Disease. How’s that for looking under the streetlight?

Meanwhile, as a patient community, we are back to case definitions, an obfuscation if there ever was one. A case definition is an exercise in futility, because the disease isn’t one thing. ME/CFS is a garbage pail diagnosis, somewhere to put all those patients who feel awful, have non-specific immune dysfunction and secondary mitochondrial failure, with nothing else to define their illnesses. Many roads lead to Rome. The question of causation is simply too complex for our current scientific methods. The ability to analyze huge amounts of genetic material cost effectively is coming, but it isn’t here yet. It may turn out that the specific retroviral sequences involved are found in particular families or groups of people with certain environmental exposures, e.g. certain chemicals or vaccines.

With the burying of XMRV has come a resurgence of Lyme Disease as The Cause. The CDC recently admitted that they were low on the number of annual cases by a factor of ten, right on time for the release of Baxter’s new vaccine and Lyme test. The CDC’s admission is unfortunately a boon to ILADS, a renegade medical society based on an incestuous relationship with a private lab, to which they refer and then use the unvalidated results to perpetuate their mythology: Patients congratulated for “herx” reactions to antibiotics, rather than recognizing it for the damaging cytokine storm that it is. Then there’s the one about how enough antibiotics in the right combination for the right duration can eradicate it, despite all evidence to the contrary. And the one about how chronic Lyme Disease is a distinct entity from ME/CFS, despite the fact that the two groups are clinically indistinguishable without test results from this one particular cash only lab whose results no other lab can duplicate. And then, if they happen to get a negative test, which is a rare event, the most imaginative of all, seronegative Lyme can be diagnosed clinically, even in people with no risk factors. It’s a scam and a dangerous one. I saw this yesterday: Is Lyme Disease Contagious? Clues Hint That It May Be A Sexually Transmitted Disease, quoting no other than Dr. Raphael Stricker, the most published of the so called LLMDs. Here is what the Office of Research Integrity at the NIH has to say about him (link):

Raphael B. Stricker, M.D., University of California at San Francisco. An investigation conducted by the University found that Dr. Stricker falsified data for a manuscript and a PHS-supported publication reporting research on AIDS. In the manuscript, Dr. Stricker selectively suppressed data that did not support his hypothesis, and reported consistently positive data whereas only one of four experiments had produced positive results. In the publication, Dr. Stricker reported that an antibody was found in 29 of 30 homosexuals, but not found in non-homosexuals. However, Dr. Stricker”s control data, which he suppressed, showed the antibody in 33 of 65 non- homosexuals. The falsified data was used as the basis for a grant application to the National Institutes of Health. The ORI concurred in the University”s finding. Dr. Stricker executed a Voluntary Exclusion and Settlement Agreement in which he has agreed not to apply for Federal grant or contract funds and will not serve on PHS advisory committees, boards or peer review groups for a three year period beginning April 1, 1993. The publication “Target platelet antigen in homosexual men with immune thrombocytopenia” in the New England Journal of Medicine, 313: 1315-1380, 1985 has been retracted (New England Journal of Medicine, 325: 1487,1991).

ME/CFS, Chronic Lyme Disease, mold illness, MCS, fibromyalgia, GWI, all have pretty much the same symptoms. Lots of tunnel vision going on in each group. A retroviral hypothesis is the most parsimonious explanation for all of these diseases, which didn’t exist or were very rare when I went to medical school 35 years ago. Dysautonomia, now common, wasn’t seen then except rarely in advanced diabetes. A retroviral hypothesis fits for ASD also. This very brief distillation is all referenced elsewhere on this blog. However, even when one turns to the literature for answers, you have to figure that a very large proportion of it is wrong due to mistakes, contamination and fraud (lots of that going around). Why Scientific Studies Are So Often Wrong: The Streetlight Effect. So whatever cohort you fall into, which may depend more upon which doctor you go to than anything else, you get to choose between neglect by conventional doctors and expensive overtreatment by the “experts”. My advice is avoid doctors and eat your vegetables.

Tonight’s song: We Shall Overcome by Pete Seeger

The Doomsday Scenario

An important new paper has been published: Xenotropic MLV envelope proteins induce tumor cells to secrete factors that promote the formation of immature blood vessels. Muegai et al. The et al includes Pathak who published the paper with Coffin which identified XMRV as a virus created in the lab. From the title you might think it is about cancer and blood vessels; however, look at the last sentence of the conclusion:

… the results suggest that xenograft approaches commonly used in the study of human cancer promote the evolution of novel retroviruses with pathogenic properties.

Here is the crux of the matter:

The evidence that XMRV was generated as a consequence of studies aimed at elucidating the pathology of human disease is disturbing in that it highlights long feared dangers of use of xenograft tissues in clinical settings, including porcine valves [14,15]. Of even greater concern, the results support the idea that attempts to develop better therapeutic interventions might inadvertently promote the development of pathogenic viruses. However, the following observations refute this possibility: First, although xenotropic and polytropic MLVs have been described as far back as 1970 [16,17], as of yet there has been no validated evidence of human infection by this class of viruses. Second, despite intensive investigation of XMRV by many laboratories [1,18,19] there is no evidence that XMRV is capable of inducing transformation of cells [1,20], although there is recent evidence showing that XMRV infection of LNCaP cells resulted in modest increases in proliferation, and invasion of cells into Matrigel in vitro (Pandhare-Dash et al. [4,21]).

Are you reassured? Their first point is a basic logical fallacy. Absence of proof is not proof of absence. Nobody ever found it, so it isn’t there. Their second point says XMRV, the manmade gamma retrovirus about which we know the most, isn’t dangerous, maybe. What a relief. Yet even they are now admitting, XMRV is not the only one out there. They found a new one for this paper. So now there are at least two, and no longer such a remote possibility.

The studies described herein address these questions, and show that at least one other XMRV-like virus exists, and that the virus evolved the ability to infect human cells and to express gene products that impact tumor pathogenesis.

But no need to panic. The folks that brought you this mess, will figure it out one of these decades. Recombinant Origin of the Retrovirus XMRV, now a year old, where they argued that the chances were “vanishingly small” that XMRV wasn’t created in a lab in the mid 90’s, while studiously ignoring the fact that other similar events were in fact quite likely. So they are finally admitting that the chances aren’t so small, since there have been so many chances. Now there are two. Or is it three? This paper, identified a cell line in use at the NCI that produces another infectious XMLV: The Human Lung Adenocarcinoma Cell Line EKVX Produces an Infectious Xenotropic Murine Leukemia Virus.

Inductive logic is forbidden. No connecting the dots allowed. And who can blame them, when it has been recently demonstrated that dot connecting gets you burned at the stake in the scientific community. Have to start with what we know and carefully build step by step, hoping that the pyramid ends with something coherent. God forbid, we should decide that we have learned something new, something so big that a top down approach should be employed. It is so big in fact, it could explain why 133 million of our people and 55% of our children have chronic illnesses in the US, and why 20% of adults in the developed world have an autoimmune disease. ME/CFS is little. It is time for a revolution. It is an emergency. I wrote that same sentence in 2010 and nothing has changed.

How many young people have been felled by ME/CFS since then? I know about one teenager that was treated in 2010 with antiretroviral drugs and recovered. His mother posted on this blog anonymously at one point, but was presumably prevented from going public. Sick for 8 months, better in 6 weeks. Treated for 6 months and remained in remission off treatment, as far as I know. How did that case report not  make it into the literature? It is unconscionable. I am sick of hearing about how an N of 1 is irrelevant. An N of 1 is called a case report. If important enough, it leads to a pilot study and then a clinical trial.

This burden of chronic disease in children is our replacement for the 20% that used to die before the age of 5 of infectious diseases. So instead of dead children we have live disabled ones. What is going to happen to all these disabled children? Whether the cause turns out to be an activated HERV, or an exogenous simple animal retrovirus (alpha, beta or gamma), the use of antiretroviral drugs is a logical thing to try. It is unfortunate that the only drugs available to us were developed for a retrovirus that is phylogenetically dissimilar from the simple viruses in question here, but even so, AZT, Viread, and Isentress have had a positive effect on a number of patients with ME/CFS, incomplete and, after a while, not clearly worth it, but there is a noticeable positive response in a percentage of patients, which appears annecdotally to be greater than placebo. That should be a beacon in the fog, not a reason to make the drugs taboo. Dr. Snyderman’s cancer is stable on full HAART. Shame on both the scientific and medical communities for ignoring him.

What would happen if you gave antiretrovirals to children at the time of an autistic regression? I know your government wants you to believe that the astonishing increase in ASD, now acknowledged by CDC at about 2%, is because we got better at diagnosing it. While that is undoubtedly partially true, since it is now a common disease, it is insulting to our intelligence to reassure people on that basis. It is only 2%, so no worries; your individual chances of having an autisitic child are still low. But what are your chances if you have CFS or a first degree relative with CFS, or autism, GWI, Lyme Disease, PANDAS, RRMS? These diseases are running rampant. Certain families bear an incredible burden of illness, including early aggressive reproductive and hematologic cancers. It is frightening, even if you look at only one disease at a time, but as part of a preapocalyptic whole involving the health of the species? Terrifying. Virus, injury, genetics. Many perfect storms.

Whatever happened to vaccines being inappropriate for people with immunological abnormailities? Given that patients with various immunological problems now encompass a very significant proportion of the population, the entire vaccine program needs to be seriously reevaluated. Continuing to give ever increasing immunological challenges to a patient population with seriously declining immunological health, for diseases that are extremely unlikely to cause long term morbidity or mortality, is no longer clinically justifiable in my opinion. It is medically incorrect and unethical at this point to take the current vaccination schedules for civilians and the military at face value, especially in light of the implications from this paper, and the recent acknowledgement that GWI is not in fact limited to the veterans of Desert Storm, but still occurring.

The upcoming FDA meeting will no doubt give mention to many more dangerous treatment options than AIDS drugs. AIDS patients got the best. Lots of very clean drugs to work with that cost billions to develop. There are probably many drugs on the shelf that didn’t work well enough for HIV, but might have activity against the viruses we are dealing with. My guess is antiretrovirals will not even be on the table for discussion.

IT IS STILL HAPPENING. Every single day. New people getting sick that should be treatable. The scientific community should not be allowed to take their own sweet time about this. It is not acceptable in the midst of this pandemic for them to withhold anything clinically relevant, whilst expressly trying to prohibit the off-label use of legal, safe drugs that might help patients who are in dire straights, patients suffering beyond belief, for whom there is no meaningful treatment. But the culture is to “burn at the stake” any scientist that steps out of bounds, as we have already witnessed. Doctors too, for that matter.

Look at the tunnel vision in this paper. It is all about cancer and xenografts. No mention that gamma retroviruses cause neuroimmune diseases in vivo, as well as cancer. No mention that there are aspects of modern biotechnology that could be causing the same or worse problems than the ones described in this paper, notably hybridoma technology. And nothing about vaccines, the sacred cow, which contain foreign DNA and are parenterally introduced, given in ever increasing numbers and combinations to an ever more vulnerable population. Live attenuated vaccines are grown in cultures known to express animal retroviruses, e.g. chick embryo, mouse brain culture, monkey kidney cells. Here is a list of vaccine excipients and culture mediums used for production from Wikipedia. And that’s now. Can you imagine what the technology was like in the 50’s, 60’s and 70’s? Viruses successively passaged through mouse brains, passaged meaning brain sucked up with a big needle and injected into the next mouse, then eventually the resultant sludge was injected into or fed to people. Now we can tell what we are doing and we are still doing it. Chemical Induction of Endogenous Retrovirus Particles from the Vero Cell Line of African Green Monkeys.

The paper under discussion mentions the “plasticity” of these viruses. They recombine and rescue each other. But scientists aren’t allowed to connect the dots, even when obvious, as it should have been a couple of decades ago, since it was known by the 70’s that these viruses were there. Here, written by a couple of the scientists who have recently contributed to the distortion of the true significance of XMRV, telling us in 1995 what they feared, but did nothing about. I have posted it before and try not to repeat myself, but in light of this paper, it deserves to reappear.

CoffinStoye95

The assumption that these viruses could not harm humans was made on very shakey ground; everybody was having too much fun tinkering to be stopped by a few qualms. There were a few absence of proof experiments. What hubris! Now, this is the only explanation for ALL of the observed phenomena, encompassing the environmental and genetic aspects, the variations on a theme so clear to see in the various patient cohorts. The Lipkin paper came up with positive serology in 6% of the study population, patients and controls, to a very nasty defective murine retrovirus that produces Env. That particular mystery should be a high priority by now. Why is the 6% not being studied intensively? They found positive serology in human beings to pathogenic retroviral Env in Lombardi et al, they found it in Lo et al and they found it in the Lipkin study. The 6% may be, probably is, only one of many. But no need to panic.

On the personal side, as I reported last time, I went back on Viread. I again noticed an uptick in function and ability to withstand stress 6 or 7 weeks after starting it. My blood pressure is now well controlled on additional antihypertensive medicines, in fact better controlled than at any other time in my illness. I started Isentress a couple of days ago and plan to add Kaletra very soon. Ali remains remarkably stable on Viread and Isentress for 3 years now. Her life is very full. She is productive and happy. Her most limiting symptom remains MCS.

I just returned home after a trip to Tucson seeing patients. The first 5 patients I saw were 3 women almost exactly my age and 2 men, both 48 years old and sick for almost four decades. That strikes me as a bit much for coincidence. I have noticed for years, and especially since I’ve been writing this blog, that my December 1953 birth date seems to be at the peak of a bell curve for middle aged ME/CFS women, suggesting something went out horizontally. Was it when we were born? We received the oral polio vaccine, on a sugar cube, but we wouldn’t have all been the same age when we got it, since it wasn’t released until 1961. And we know that there were outbreaks before the polio vaccine. Papers have documented certain years with peak waves of onset. All of this fits with the idea that it has happened multiple times and each time, it looks a little different, e.g. average age of onset, gender susceptibility, most prominent symptoms, thus the misconception that it is a heterogeneous problem.

Just as there were many retroviral invasions in the distant past, in this paper we have emerging evidence that it has happened again, on a grand scale, over a very short period of time. There are most likely already some viruses that are endogenized in families, since it has gone unchecked for so long. The very high incidence of PCOS in young ME/CFS women may be consistent with a retrovirus invading the germline. When I first wrote about this possibility, I thought it was irreparable, a true doomsday scenario, but it is not. Evolution will deal with it, even while our fertility is dropping at an alarming rate. Deletions will occur, possibly in not very many generations. We will learn how to stay methylated to keep our viruses quiescent. We will eventually learn to manipulate epigentic factors in our favor. But like carbon emissions, we need to stop it now. A retrovirus or pieces of a retrovirus now and again, repeated exposures to endocrine disruptors, synthetic hormones and steroids, add a little Bt toxin, a “cover your ass” CT scan and a couple of radioactive tracers for worthless imaging, courtesy of your doctor, and voila! A recipe for the disaster that is occurring, while nobody panics.

Today’s song: You Haven’t Done Nothing by Stevie Wonder

MS Light?

What’s occurred in the last 30 years is criminal, Mikovits says today. “Mothers and fathers got sick, their children got sick.” But with heightened attention, she adds, patients are likely to get help soon. Even lacking a causal pathogen, biomarkers in this patient population can be studied for clues. “We can find therapies for the CFS patient population even before we determine the exact cause,” Mikovits says.
Chasing the Shadow Virus by Hillary Johnson Discover March 2013.

 

As I said last time, I started Viread again, because I became dangerously hypertensive, a few weeks after stopping it. I had a significant drop in my BP, almost to normal from days 6-12, then it went up again, not quite as high as before, but very high. After much fiddling, it is now controlled, but I had to add additional antihypertensive medication. Happily, after a month back on Viread, there is a downward trend again and I’m hoping I’ll be able to wean from the extra treatment soon. This is not the first time I’ve had this problem, but it was the worst episode yet, and was related in time to stopping Viread. I have been feeling significantly better for the last week, and am also back to baseline productivity. I flared for the first few weeks I went on Viread the first time also. I am going to Tucson to see patients in a couple of weeks and when I come home, am planning to restart Isentress and then Kaletra. I really didn’t want to go back on Viread, but it does seem that I’m getting a payoff again from it. I went off because I wasn’t doing well, and things got even worse, now better back on. I am just reporting, not explaining why or how. The disease is a relapsing remitting illness all on it’s own and changes may or may not have anything to do with the last thing you did.

My reading lately has been about retrotransposons and HERVs, especially MSRV, multiple sclerosis-associated retrovirus. Here is a cutting edge, must read paper, senior author Hervé Perron, whose name appears on most of the important papers on this topic: The DNA Copy Number of Human Endogenous Retrovirus-W (MSRV-Type) Is Increased in Multiple Sclerosis Patients and Is Influenced by Gender and Disease Severity.

MSRV increases its copy number in PBMC of MS patients and particularly in women with high clinical scores. This may explain causes underlying the higher prevalence of MS in women. The association with the clinical severity calls for further investigations on MSRV load in PBMCs as a biomarker for MS.

Human endogenous retrovirus type W envelope expression in blood and brain cells provides new insights into multiple sclerosis disease.

The envelope protein from multiple sclerosis (MS) associated retroviral element (MSRV), a member of the Human Endogenous Retroviral family ‘W’ (HERV-W), induces dysimmunity and inflammation.

Env antigen was detected in a serum of 73% of patients with MS with similar prevalence in all clinical forms, and not in chronic infection, systemic lupus, most other neurological diseases and healthy donors (p<0.01). Cases with chronic inflammatory demyelinating polyneuropathy (5/8) and rare HC (4/103) were positive. RNA expression in PBMC and DNA copy numbers were significantly elevated in patients with MS versus HC (p<0.001). In patients with MS, DNA copy numbers were significantly increased in chronic progressive MS (secondary progressive MS vs relapsing-remitting MS (RRMS) p<0.001; primary progressive MS vs RRMS -<0.02). Env protein was evidenced in macrophages within MS brain lesions with particular concentrations around vascular elements.

The above paper concludes that exogenous virus production is unlikely. Particles have been identified in MS patients going back to 1989: Leptomeningeal cell line from multiple sclerosis with reverse transcriptase activity and viral particles. 

In fact, a virus was identified in MS in 1975. Look at how far they got with the technology at hand at that time: Multiple sclerosis-associated agent: transmission to animals and some properties of the agent.

In confirmation and extension of observations by Carp and his associates, brain tissue and sera from patients with multiple sclerosis (MS) were found to harbor an agent which induces a transitory depression in polymorphonuclear leukocytes (PMN) in mice as well as in rats, hamsters, and guinea pigs. All of eight MD brains contained this agent at titers as high as 10(-9)/g of brain tissue. The agent was found in MS sera at titers up to 10(-3)/ml of serum, but its presence depended to some extent on the clinical status of the patients; it was observed more frequently in sera of patients with active disease (73%) thatn in sera of patients with quiescent disease (31%). Control brain tissues or sera failed to induce PMN depression. The apparently MS-associated agent (MSAA) passed through 50-nm but not 25-nm membrane filters (Millipore Corp.) and was largely sedimented at 105,000 X g but not at 50,000 X g for 1 h. It multiplied to high titers in the central nervous tissue of the inoculated animals and could be serially transmitted from animal to animal by passage of brain homeganates. Various observations and considerations appear to preclude that MS-associated agent represents an indigenous animal virus. Although its role in MS remains to be determined, it should be considered a candidate for the etiology of this disease.

Endogenous retroviral genes, Herpesviruses and gender in Multiple Sclerosis contains electron micrographs of MSRV particles.

Particle-associated retroviral RNA and tandem RGH/HERV-W copies on human chromosome 7q: possible components of a ‘chain-reaction’ triggered by infectious agents in multiple sclerosis?

The human endogenous retrovirus link between genes and environment in multiple sclerosis and in multifactorial diseases associating neuroinflammation.

Endogenous retroviruses represent about 8% of the human genome and belong to the superfamily of transposable and retrotransposable genetic elements. Altogether, these mobile genetic elements and their numerous inactivated “junk” sequences represent nearly one half of the human DNA. Nonetheless, a significant part of this “non-conventional” genome has retained potential activity. Epigenetic control is notably involved in silencing most of these genetic elements but certain environmental factors such as viruses are known to dysregulate their expression in susceptible cells. More particularly, embryonal cells with limited gene methylation are most susceptible to uncontrolled activation of these mobile genetic elements by, e.g., viral infections. In particular, certain viruses transactivate promoters from endogenous retroviral family type W (HERV-W). HERV-W RNA was first isolated in circulating viral particles (Multiple Sclerosis-associated RetroViral element, MSRV) that have been associated with the evolution and prognosis of multiple sclerosis. HERV-W elements encode a powerful immunopathogenic envelope protein (ENV) that activates a pro-inflammatory and autoimmune cascade through interaction with Toll-like receptor 4 on immune cells. This ENV protein has repeatedly been detected in MS brain lesions and may be involved in other diseases. Epigenetic factors controlling HERV-W ENV protein expression then reveal critical. This review addresses the gene-environment epigenetic interface of such HERV-W elements and its potential involvement in disease.

Here is a paper about something that could turn into useful therapy, overlooking the significant risks associated with the administration of monoclonal antibodies and the inherent risks involved in hybridoma technology, which involves fusing human cancer with animal B cells. GNbAC1, a humanized monoclonal antibody against the envelope protein of Multiple Sclerosis-associated endogenous retrovirus: a first-in-humans randomized clinical study.

Human endogenous retrovirus (HERV) genes represent about 8% of the human genome. A member of the HERV family W, the Multiple Sclerosis-Associated Retrovirus (MSRV) gene, encodes an envelope protein (Env), which can activate a proinflammatory and autoimmune cascade through its interaction with Toll-like receptor 4. Due to its proinflammatory property and an inhibitory effect on oligodendrocyte precursor cell differentiation, the MSRV-Env protein could play a crucial role in the pathogeny of multiple sclerosis. GNbAC1 is a humanized monoclonal antibody of the immunoglobulin G4 type, which is directed against MSRV-Env. After validation of the MSRV-Env as a therapeutic target in preclinical experimental models, a clinical development program was initiated.

In these healthy male subjects, the safety and pharmacokinetic profiles of GNbAC1 appeared favorable. These findings are expected to allow for the launch of a Phase II development program for this innovative therapeutic approach in patients with multiple sclerosis. ClinicalTrials.gov identifier: NCT01699555.

However, rather than injecting antibodies to gobble up the viral envelope, given the real and theoretical problems with monoclonal antibodies, it would be better to keep Env from being produced in the first place. Maybe a protease inhibitor is the missing link. AIDS drugs didn’t work well until they had PI’s. Dr. Snyderman’s data suggests this was the case for him. I am happy to report that he remains stable at 32 months. Does a response to a PI imply exogenous virus? How far does a HERV have to get in its reproductive cycle before a PI would do some good? SFFV is a defective virus with a pathogenic envelope. If MSRV produces variable particles, some of which appear complete on EM, is it ever infectious?

Reading about MS, thinking about my own clinical presentation and putting it together with everything we have learned since XMRV entered our lives, ME/CFS may exist on a spectrum with MS, in the same way that Aspergers Syndrome is part of the autistic spectrum. Certainly, we are a variation on a theme. I have called it MS light before and I think it is a good working hypothesis for now. Up To Date’s summary on MS is here. Note the many similarities, genetics, epidemiology (including cluster outbreaks), possible problems with the Hepatitis B vaccine. It seems to me our best hope post XMRV is to ride on the coattails of MS, even though it is pathetic that we need to, given that there are at least three times as many of us.

I’m getting lots of questions about what I think of the paper published by De Meirlier et al. Plasmacytoid dendritic cells in the duodenum of individuals diagnosed with myalgic encephalomyelitis are uniquely immunoreactive to antibodies to human endogenous retroviral proteins. I am not going to evoke all the reasons why I might have a problem with this paper, whatever it says. I have moved on. Much of it is documented elsewhere on this blog.

Taking the paper at face value, problems with it are the tiny sample size, from patients that I hope had very serious GI complaints, compared to the patient population as a whole, since, presumably, they warranted a duodenal biopsy. I would like to take this opportunity to emphasize that I am completely opposed to taking any risk of harming fragile patients with unnecessary procedures in order to study the disease. There is no reason to do duodenal biopsies on garden variety ME patients, so the patients in this study should have had significant inflammatory bowel disease, not just IBS. The procedure carries a significant risk. A duodenal punch biopsy can result in death. There is lots of tissue to study without resorting to that. Fresh tissue is harvested all the time for other reasons, there is lots of material to autopsy and lots of specimens in paraffin, which is what was used in this study. My small intestine in paraffin is stored down the street at the local hospital. And plasmacytoid dendritic cells can be harvested from peripheral blood.

The simplest explanation for the findings in this paper is that there was a range of proteins consistent with a generalized activation of HERVs. Many things can transactivate HERVs including recombination events and exposure to exogenous retroviruses. Perhaps they didn’t name the HERV because they were all transactivated? This is what you might expect in someone with inflammatory bowel disease. We have no idea whether these people had a neuroimmune disease or not. The fact that they had a range of symptoms that would qualify for a clasification of CFS is neither here nor there. Endogenous retrovirus-K promoter: a landing strip for inflammatory transcription factors?

There are quite a few papers worth reading in the references, but they missed one:  Cell-free HTLV-1 infects dendritic cells leading to transmission and transformation of CD4(+) T cells.

I hope they are right. It would set us on a path to catch us up to MS, where we belong. However, the paper is so vague. Antibodies to proteins expressed by a generic HERV. This negative paper was also just published: Human Endogenous Retrovirus-K18 Superantigen Expression and Human Herpesvirus-6 and Human Herpesvirus-7 Viral Loads in Chronic Fatigue Patients. It is good news for us that this avenue of research is being pursued.

I expect the De Meirleir paper to get shot down or be ignored completely. The scientific world will probably only read it for laughs, considering the source. They didn’t find a “real” virus this time, so nobody needs to spend millions of dollars to prove it wrong. MSRV was ignored for decades, even though it is associated with a more sympathetic disease than ME/CFS. Progress with it has been glacial, revealing the non-urgent, almost lackadaisacal attitude of the biomedical world towards activated HERVs, even one that was shown to produce viral particles over 20 years ago. In any case, infectious or not, there is increasing agreement that HERV W is associated with MS and can transcribe an Env protein which is neuropathogenic.

And another related illness: HERVs expression in Autism Spectrum Disorders.

I am particularly happy to report that my friend Dr. Mikovits is doing well through it all. She has received many letters of support and asked me to let the community know that she is fine and excited about the future. She is consulting with respect to drugs and diagnostics. She continues to lecture. Currently, she is working on projects with Dr’s Ruscetti and Lipkin, and, in a translational capacity with several medical doctors, Eric Gordon, Chitra Bhakta, Derek Enlander, Paul Cheney, Michael Snyderman and myself.

This excerpt is from an email to me a couple of days ago when I asked her a few questions for this blog:

Planning for the April 25th FDA meeting…a two day meeting to get drug companies and clinical trials going..to avoid the failure of Hemispherx..we have a huge opportunity here..talk about that..tell the patient community I will go there and work to bring them the drugs that are out there as soon as possible..we as a community do not have to go back to basic research where we are decades away..we can translate what we know.. write about that …move forward..

My background is in antiviral drug mechanisms and epigenetic drug development..I am going back to my roots to focus on drug development in infectious/ inflammatory disease…I can now apply my expertise and extensive network to ME/CFS..

Dr. Lipkin said this about her in Nature, only a few months ago:

I feel very badly for Mikovits, [her co-author] Ruscetti and Harvey Alter [a hematologist at the NIH Clinical Center in Bethesda, Maryland, who led one of the CFS studies]. Mikovits in particular — she has lost everything. She can be wrong but she’s not a criminal. She has been honest in a respectful, forceful way and said that we have to conclude that we were wrong. You can imagine how difficult it must be, and I think she should be applauded. Lots of people wouldn’t have the balls to do that. She has come across as a scientist who really believes in the importance of truth.

Dr. Judy has come a long way since then, pulling herself up by her own bootstraps. I am in awe of her resilience. Handed lemons, she is making excellent lemonade. Stay tuned.

Today’s song: Titanium by David Guetta

Twists And Turns

The world will not be destroyed by those who do evil, but by those who watch them without doing anything. ~ Albert Einstein

When I started this blog, I promised to share my journey as it unfolded, before knowing the outcome. My goal was always to explore and learn, not convince anybody I’m right, since I clearly don’t know. So here’s what’s happened since I last wrote. A day after I wrote the last blog, I ran out of Cozaar (losartan), forgot I hadn’t put it in my pill case for the whole week and missed two doses. Before restarting it, I checked my blood pressure and it was 212/127. I’ve missed losartan other times in the last few years, but never with such a severe elevation and always responsive to restarting the med. But this time, my pressure stayed ridiculously high, even after adding a second drug, amlodipine, which I have used as a second drug before, but haven’t needed in several years. I have a long history of labile hypertension and a period of persistent severe hypertension was the problem that ended my Emergency Medicine career in 1996.

It happened about a year after my first symptom, following a period of unrelenting stress. The blood pressure elevation came with a feeling of doom. The numbers were often high, for most of a year, despite all the drugs my doctors threw at it. Initially my academically inclined physicians were excited by creepy medically unexplained symptoms in a colleague. They thought I had something cool, like a pheochromocytoma or carcinoid. They sent off all their esoteric tests and when it was all negative, or almost negative, they concluded that I either had a world class case of white coat hypertension or was crazy and not taking my meds. Indeed, the independent medical exam ordered by my disability carrier concluded I could return to the ER if I took my antidepressants like a good girl, despite my protestations that I wasn’t depressed and my blood pressure was very high at home too, with nary a white coat in sight, besides my own.

It is a long, sad story, filled with injustice and stupidity, mine and my doctors’. I’ve written some of it here before, but I’m mentioning it again now, because this current episode was so similar to what happened then. The hypertension occurred in the context of an abnormal stress response and autonomic dysfunction/instability. Because my dysautonomia occurs in the setting of hypertension, I don’t have POTS per se, but a variant. The autonomic nervous system wasn’t even part of the discussion back then, and here is why. The first paper in the medical literature on POTS, or orthostatic postural tachycardia syndrome, was published in 1993, only 2 years before my first symptoms and had no penetration as yet to an average work-a-day doc: Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia?

Even by 2002 when my husband developed severe dysautonomia, it was not part of the common medical lexicon, as it is beginning to be now, finally. Recognizing autonomic nervous system dysfunction as a core deficit in Gulf War Syndrome sufferers is a big step from our old concept of PTSD. So what do we think? Was it a new phenomenon? Or were all the doctors who came before me such poor physical diagnosticians that they missed it without the benefit of tilt tables?

As I have previously reported, I did not have viral onset CFS, but a very atypical onset and course, which was clinically more similar to Gulf War Illness than ME or CFIDS, as it was called then. If I’d been in the military at the time, instead of a civilian working in a trauma center, I might have landed in that bin. Now, 20 years later, it is finally starting to occur to the scientific and medical communities that the problem is in fact more extensive than the 250,000 soldiers who got sick at that one particular place and time: Report: New veterans showing Gulf War illness symptoms. Could this be a prelude to asking questions about the pathophysiological similarities observed in the various neuroimmune disease cohorts, diseases which were rare or unknown just a few decades ago? What risk factors are shared by vets with GWI-like illness, autistic children and patients with ME? Why is that question not being asked in the context of the public health emergency that it is?

So I’ve had problems with my BP all along, but nothing as severe or sustained since way back then, until now. I’m intolerant of most classes of antihypertensives, but have evolved an approach to BP spikes that works for me, basically temporizing until the episode resolves on its own, since experience has taught me that aggressive treatment will make me bottom out suddenly at some point. I’m better off accepting a mild elevation than pushing my luck, with such an unstable baseline. Hypotension is probably worse. Certainly, it feels worse. I did all the things this time that usually help, and everything else I could think of. I mentioned in the last blog that I had reduced my dose of Deplin as I was feeling sensitive to it while things were getting worse in December. I went back to my old dose of 7.5mg to see if that was the problem. Mood improved, but blood pressure didn’t. Went up to max dose on the newly added calcium channel blocker and took supplements and herbs which support vasodiliatation and relaxation. High dose Epsom salt baths. Biofeedback. Everything worked briefly, but still with regular readings above 200 systolic, plus the continuing waves of dread I was experiencing, so similar to the beginning of my illness. I was trying to figure out which 3rd drug to add soon if something didn’t give, knowing that all the choices were likely to be problematic.

Faced with only unpleasant choices, and since the problem was related, at least temporally, to discontinuing Viread, I decided to restart it. I was in no way excited or positive about it, but felt it was the least of the bad choices. Since stopping it, I had been feeling better in some important ways, with notably less nausea and possibly feeling a little stronger. So despite a strong preference for going ‘au naturelle’, and tired of being a guinea for drugs developed for patients with a different disease by drug companies with no interest in ours, and very tired of copays, I nevertheless found myself surprised to be back in a place where restarting antiretrovirals was looking like my best option. When Ali and I first started arv’s in early 2010, I believed we had a virus which had been confirmed at 3 labs, including the Cleveland Clinic and the NCI, plus published supportive in vitro testing. It made sense then, but now? I spend my energy working on natural solutions for patients. My own goal was to get off any drugs I possibly could. But the blood pressure wouldn’t give, trumping all my reasoning. I went back on…

On the 5th day back on Viread, with a resurgence of nausea worse than before I stopped, I was cursing drugs and drug companies, when my symptoms broke, like a fever. The high blood pressure let go, as did the other symptoms that came with it in a chicken or egg fashion, such as the fight or flight feeling from too much sympathetic tone. It isn’t just a number on a blood pressure monitor, but part of an entire symptom complex. Since things turned around 6 days ago, I’m doing better than before I stopped it in the first place. I have no logical explanation for that. BP is adequately controlled, at least pretty good for me. I am planning to restart Isentress in a week and I am considering lopinavir as a 3rd drug. See the last blog for Dr. Snyderman’s data demonstrating his response to lopinavir. Kaletra is currently part of a regimen undergoing a clinical trial for a beta retrovirus, similar to MMTV, in PBC (primary biliary cirrhosis), with evidence for growing, slowly, as is always the case when it comes to investigations of human retroviruses other than HIV.

Why might this recent experience of mine be interesting to other ME/CFS patients? Hypertension is not usually a finding in this patient group. However, vascular instability is. Increased sympathetic tone is. An abnormal stress response most definitely is. All of that apparently got worse and now better again, in an A – B – A fashion, taking, stopping and restarting Viread. And, distinct from my usual predicament, I could actually measure something. Numbers! BP now coming into line after 11 days back on, starting to decrease the second antihypertensive, didn’t have to start a 3rd class with intolerable side effects. I really wanted off, but I am not afraid of these drugs, so here I am again, and so far, so good.

After watching me twist in the wind for the last couple of months, Ali is planning to sit tight with respect to her antiretrovirals, enjoying her good fortune and relative stability. For those readers who are interested in her regimen for PCOS, she has decided to discontinue Actos for the long haul, even though it helps her in the here and now. She has started a slow wean, planning to increase metformin if necessary.

Having learned the hard lessons personally with respect to unvalidated tests from small labs with special interests, I came across this on Medscape and think it needs to be shared: Lyme Culture Test Causes Uproar. The link works if you have an account, but here is the first paragraph and exerpts of the article about a culture for Borrelia burgdorferi from a lab called Advanced Laboratory Services:

A new chapter in the Lyme disease controversy opened in September 2011 when Advanced Laboratory Services, Inc, announced the commercial availability of a new culture test for Borrelia burgdorferi. Some Lyme patient advocacy groups and physicians began encouraging patients to have the $595 test, but others are concerned about the early commercialization of the still-unvalidated test. This concern may result in changes to how the US Food and Drug Administration (FDA) regulates so-called “homebrew” or laboratory-developed tests (LDTs)…

Soon after Advanced Laboratory Services’ initial public announcements about the new culture test, emails and public statements attributed to Dr. Burrascano began appearing on Lyme-related Internet sites, including comments that the culture test was approximately 94% sensitive and 100% specific.

Dr. Burrascano told Medscape Medical News that the validity of the culture test was established using blood samples provided by physicians and that the identity of Borrelia was confirmed by its ability to grow in Borrelia-specific media, by its characteristic appearance on darkfield microscopy, by reacting to published Borrelia-specific polyclonal and monoclonal immunostains, by DNA polymerase chain reaction (PCR) at 2 different loci, and by direct DNA sequencing. These data are so far unpublished…

And here is the disclosure statement at the end of the article:

Dr. Burrascano has disclosed no financial interest in the laboratory, in the Borrelia culture, or in any intellectual property and receives no commissions from the tests. Dr. Burrascano is senior vice president of medical affairs and medical director for Advanced Research Corporation, a contract research organization with the same president and corporate address as Advanced Laboratory Services, Inc. Dr. Mead And Dr. Green have disclosed no relevant financial relationships.

Oy vey. Here we go again. Another unvalidated test to justify bad treatment. What’s wrong with the unvalidated tests they’ve been using all along? The ones that are almost never negative for various tick borne diseases? And this, hitting the presses coincident with the WPI promoting Dr. De Meirleir’s lecture, yet another doctor with a history of profiting from unvalidated lab tests. I think I’ll stop now, so my blood pressure stays down, and end on a positive note.

I just had the pleasure of reading Hillary Johnson’s very fine piece in the latest edition of Discover Magazine, available to non-subscribers soon in print at a newsstand near you. Her most excellent account of the XMRV saga, “Chasing The Shadow Virus” sheds journalistic light on the events that occurred and raises desperately needed awareness for our shadow illness. I was close to the events, have my own perspective and strong opinions about what happened and why; this article rings true to me, maybe because I have this same quote on my phone in a text message, “I still see the footprints of a retrovirus..” Yes, Pandora, the box is open forever. Denial is dark and powerful, but eventually, the truth will shine through.

We can discuss possible esoteric mechanisms from now until the cows come home as to why Viread stops an inflammatory process which causes my blood vessels to go into spasm: Brain Microglial Cytokines in Neurogenic Hypertension. But why not start with the most likely explanation? It is a drug which inhibits retroviral reverse transcription. Certainly it is a real possibility that it is doing what it was designed to do.

 

Big Yellow Taxi – Joni Mitchell

“2013 will be a year of optimism, opportunity and HOPE”

Dr. Judy’s bankruptcy was final yesterday. She has lost everything financially. Let’s hope the vengeance is now complete. Her homes are being sold and she still doesn’t have her notebooks. She isn’t working as a lab scientist because of the Whittemore’s defamation of her character, despite Dr. Lipkin’s support.

And still the WPI asks for money from the community? For what? They have not published one paper in the year and a half since Dr. Mikovits was fired. Instead they have spent a bunch of money to ensure she is completely stopped. What kind of people would do that? Why wouldn’t they want her to be able to work? To live her life? She gave them five years, trying to help their daughter, but wanted to follow the truth instead of the money, so they did everything they could to destroy her. What’s in those notebooks that they are so concerned about? There is no intellectual property, since XMRV is not a human retrovirus, but a lab contaminant, so there must be something incriminating, something that leaves them vulnerable. But they won. They have the notebooks.

From a big picture perspective, as affects the patient community, the whole misadventure was so wrong, it’s hard to count the ways. We were robbed, on many levels. From a personal perspective, it is still incomprehensible to me that the promise we felt, back when Dr. Judy was being promoted like a rock star, has turned to dust. However, she has told me repeatedly that they have taken her money, but they can never take the most important things from her. From an email last night, after reading my draft for this blog, copied here with permission:

The copies of my notebooks prove my total innocence. I did my job and beyond…their actions prevented the truth and prevented me from getting work, and not only me, my students as well…but as you say it robbed the scientific and patient communities of data paid for by federal dollars and donations to a “non-profit” institution. I could NOT LIE or ALLOW the truth to remain hidden or support those who would not tell the truth in order to take advantage of a vulnerable patient population.

Their intellectual property was unraveling when it was found that XMRV was a Silverman lab contaminant..what they are and were afraid of is that they will be held liable for the fraudulent testing.. Lombardi and the Whittemores lied for 3 years and they all had a financial interest in VIPDx. There simply cannot be intellectual property or diagnostic testing for a virus that does not exist in any natural organism!!!

From my personal perspective it is incomprehensible, that in the United States of America, all of my constitutional rights can be denied in order to cover up the truth  …They do not want me to work because they are that vindictive. They know I live for my work in cancer and neuroimmune disease and for patients everywhere. They know my work is my life ..they thought they could take my integrity..but you know what ..THEY FAILED!  Because Lipkin applauded my integrity and succeeded at showing the world what Silverman and Lombardi did to this patient population..THEY are the COWARDS and I have my honor and my integrity but most importantly of all, I have the support and confidence of the patient population, not just the CFS patients but the cancer, Chronic Lyme, Autism, MS ALS, Parkinson’s.. that is, ALL the patients to whom I have dedicated my life.

You see, my life was never about money and never will be. I am still working as a volunteer, I enjoyed coffee with two CFS patients yesterday and a cancer patient this morning, before I went with her to an appointment. I have never stopped being a patient advocate and will continue to be one in 2013. As one of my courageous friends with aggressive Parkinson’ s wrote in a Xmas card: “2012 was a year of change and loss,  faith..we all needed tremendous faith to survive 2012!! 2013 will be a year of optimism, opportunity and HOPE”.

Today’s song: I Will Not Be Broken by Bonnie Raitt