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

Healing In A Toxic World

My health has been slowly improving for four and a half years. Even so, I have been unable to exercise without payback, but that changed three months ago. I attribute this breakthrough to “minding my mitochondria” per Dr. Terry Wahls. Six months ago I watched her TED Talk. I had written a blog entitled MS Light? a few months earlier, suggesting that MS and ME are two branches of the same tree and I thought, if it worked for her, maybe it will work for me.

We jumped into the diet as a family in July. In a nutshell, 3 cups each of greens, sulfur containing foods and colored fruits & veggies each day, bone broth, grass fed grass finished meat,  organ meat and seaweed. No grains or simple sugars. Olive oil, coconut oil, butter, animal fat. Every bite needs to be nutritionally dense. In addition, we cleaned up our act, went all organic, non-GMO, almost all locally sourced food, no cans containing BPA, no teflon or plastic in the kitchen. In addition, we emphasized a variety of mushrooms, ginger, turmeric, garlic, cilantro and fermented foods. We all noticed some improvement after a month, sick and healthy people alike.

Then I got distracted, sucked up in a negative energy vortex involving my family of origin, the kind of stuff that makes me nuts, and then sick. I didn’t particularly notice what I was eating for a while, but ate what my daughter, Julie, put in front of me. Historically, I can adhere to a regimen for about a month, before losing track, but Julie kept me on the diet.

One day, after about three months of eating this way, I was feeling particularly stressed, sick and discouraged. My husband said, “Let’s go for a ride on the tandem.” I quipped, “OK, maybe I’ll die.” I’ve ridden a few times before in the last few years, and the aftermath wasn’t pretty. But this time, it was only good- the ride itself, afterwards and the next day. I was shocked. After nine years, I didn’t really expect it to ever change. We went again the day after and have kept on going, trying to ride at least three times a week. We started with 4.5 miles in 25 minutes and have worked up to 17 miles in an hour and a quarter. Also, I can now hike a couple of miles again, even though walking was really tough before. When I stand, I don’t feel like somebody turned up the gravity anymore. My arms no longer feel heavy. No more wheel chairs through airports for this girl.

I am putting on muscle quickly. I have much less resistance to exercising than when I was younger and healthy. Maybe it’s because I couldn’t do it for so long or maybe it’s because exercise requires a willingness to suffer and my illness has taught me how to accept physical suffering. I am so motivated, we have continued to ride in freezing weather. We even tried off road for the first time a couple of days ago when it was 30 degrees out. 7 miles of dirt with mud and ice here and there, plus a fierce wind. Pretty hardcore for a 60 year old sick woman;).

We have been learning about food and improving our family’s diet since our kids were little, but even so, I must have been nutritionally deficient and/or being harmed from ongoing toxin exposure in my food to have experienced such a fundamental improvement in physical function. Here’s an interesting one. I have been taking Deplin 7.5 mg for years but in the last month, I’ve stopped tolerating more than a tiny dose, which is good, because the pharmaceutical preparation contains coating and additives that a quality OTC supplement doesn’t. So methylation status is much more complex than MTHFR genetics. It is possible to get enough folate from food, even for someone who needed to take it before in high dose pill form.

As I am using food as medicine, I am ever more suspicious of anything that looks like a pill or was made in a plant. I am taking Vitamin D3, methyl B-12 and OTC 5-MTHF in the form of Metafolin, B-complex, fish oil, UBQH, magnesium and chlorella. I am still taking antihypertensives and bioidentical HRT. I stopped Viread and Isentress a couple of months ago, once I knew my improvement was solid. A year ago, I had a hypertensive crisis when I stopped Viread monotherapy and restarted. This time my BP only went up a little for a short time and returned to better than prior baseline. I wanted to get off, because it is not going to be studied and there is no way to monitor what the drugs are doing. I was pretty sure they were helping in the first year, and we had clear laboratory evidence of improvement from the WPI, but after that, it was less clear. Both Ali and I did very well during the years we took them, but when we started, I thought we’d have viral load measures in a year and it didn’t happen.

Ali likes the diet, but hasn’t experienced the clear cut benefit that I have. She has continued her slow uphill climb, excelling in college at U Mass Lowell online, going out and being much more physically active, MCS improved, but still experiencing post exertional malaise if she pushes it. As she says, she has gotten very good at managing her spoons. She is living with her boyfriend in Albuquerque, something I wouldn’t have thought possible a couple of years ago. She has made huge progress, but it has not been clearly related to the diet. She wants to continue nevertheless. She stopped Actos about 6 months ago, continuing on metformin and luteal phase Prometrium with good control of PCOS symptoms. She came off arv’s in the last month and has been having a bit of a hard time since, but not so bad as to force her to restart at this point. With no support from the medical or scientific communities, it is time for us to stop if possible.

All of this is triggering my survivor’s guilt or whatever it is. Maybe that’s why it’s been so hard to write lately. Or maybe it’s just that my anger has been diluted by endorphins and anger has been the driving force behind many of the blogs I have written. I feel guilty reporting that this is what is working for me, because I couldn’t do it without lots of support. My daughter keeps me on the diet and exercise is dependent upon my husband’s skill and encouragement. My advice is find a friend to support you and, if you can exercise, pick an activity you have done before. I have muscle memory for the tandem; we rode for many years before I got too sick to do it.

Besides patients with neuroimmune disorders there is growing anecdotal evidence that a paleo diet is beneficial for patients with autoimmune disorders, in particular rheumatoid arthritis. Many ME patients have evidence of autoimmunity. Phoenix Helix is a good blog with lots of useful information, in particular how to do a strict elimination diet, cutting out the most allergenic foods that might be contributing to the problem, dairy, eggs, nuts, nightshades, legumes, and then adding them back in one at a time. Ali is planning to do this when she has a clear space to see if a particular food is keeping her from realizing gains.

So, since I was already on a good diet, what’s my guess for what is making the difference? The big changes for me were force feeding leaves, bone broth, seaweed, no grains, sugar or vegetable oils besides olive and a little sesame, almond and avocado oil. All organic. Toxin avoidance. Organ meats are a bit of a stumbling block for me, but I am eating some liver.

I am a small woman and can only eat 6 or 7 cups of vegetables and fruit per day. It falls off quickly if I don’t focus on getting in my cups. Once I eat what I’m supposed to there is no room for anything else. I have not been scientific about it at all. 3 cups is a heaping dinner plate, raw, where you can’t see the bottom. I just work on getting down as much as I can. I have a daily smoothie with leaves, berries and probiotics which helps me get down more greens.

A couple of my patients crashed themselves at the beginning trying to do the diet. Others have said up front, I can’t do it. I could never have done it without Julie. I think I could do it now, but I’m six months in and my daughter is now an inspired paleo cook, so if I stay home, I’m covered:). But I keep thinking about how to make it possible for sick patients. In a perfect world, share a cook. Otherwise, baby steps! Massive dietary change is hard on the body. Eat more leaves. Eat from the rainbow. Make bone broth once you have sourced clean animal marrow or knuckle bones. Put in some lemon or apple cider vinegar to help extract the minerals. It is kind of gross if you cook it on the stove top for a long time, but Julie makes it in a pressure cooker, which as far as I can tell, preserves the nutrients well. It is quick and wonderful. Healing. She makes it with garlic, ginger, fresh turmeric root and seaweed, then uses it to cook everything. I enjoy it plain or with spinach or kale.

There is so much to learn about food. Eating for health is a lifestyle, not a diet. Take a look at Eating On The Wild Side. It will inform your decisions about what to buy in the supermarket, farmer’s market and seed catalog, as well as how to store and prepare your food to maximize it’s nutritional value. It isn’t really possible to eat an ancestral diet since the foods that paleo people ate are no longer readily available. I really looking forward to gardening and foraging in the spring. My daughters and I started a Facebook community page called Healing In A Toxic World. Please join us. We are sharing what we are learning including how to source your food and lots of recipes.


Van Morrison – Days Like This

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. 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 avoid the failure of Hemispherx..we have a huge opportunity 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

Our experience with antiretrovirals

Two months shy of three years, I discontinued antiretrovirals, began after receiving reports of positive XMRV cultures from VIP Dx in January 2010. Ali and I started AZT and Isentress in March 2010, added Viread in May 2010, discontinued AZT in Feb 2011. I discontinued Isentress in August 2011 and remained on Viread monotherapy until two weeks ago. Ali continues on Viread and Isentress. We also tried the protease inhibitor Lexiva, and I tried it a second time, but didn’t tolerate it.

We both improved for the first year, but it wasn’t a clean experiment, as I’ve said all along. We did other things concurrently. When we started, I thought we’d ride on the coattails of HIV and have viral load measures in a year or two. We sent lots of blood to the WPI and Dr. Mikovits was studying us, but the specific results were never shared with me and are now lost, with the rest of Dr. Mikovits’ data.

We stopped AZT after 11 months, with no way to monitor, to prevent long term toxicity. Neither of us noticed much of anything coming off of it. By the summer of 2011, I knew there would be no help with monitoring and came off Isentress in anticipation of our both stopping the drugs. I wanted to see what happened to me first, before Ali came off. I tried to stop Viread shortly after. Nothing noticeable happened when I stopped Isentress, but I felt worse after a few days of stopping Viread, better when I went back on. I did that two other times by the first part of 2012, with the same results.

Meanwhile, Ali continued to go uphill. Me not so much. In hindsight, I wish I had not stopped Isentress, since Ali continued to improve and I didn’t. I functioned fairly well, with lots of travel and stress, through my last trip to Hawaii in October, but then crashed pretty hard. By Christmas I was feeling very poorly. I always say, when things go south, stop the drugs, so I did. Since then, I am feeling a little better. I am having less nausea than I was having on Viread, but my nausea predated arv’s by several years and when I went on arv’s, I didn’t think it was worse. I am now on only Cozaar, baby aspirin and hormones. As I got sicker, I my tolerance for Deplin lessened, interestingly, and I am now taking an OTC dose of Folapro 800mcg once per day. I have increased nutriceutical and nutritional support, am doing biofeedback, and am about at my October baseline, I’d say.

Here’s an interesting paper about raltegravir, though reactivated Herpesviruses are not a part of our clinical picture: A Drug Against AIDS Could Be Effective Against The Herpesvirus and here’s the paper: Structure and inhibition of herpesvirus DNA packaging terminase nuclease domain. It isn’t new, but I hadn’t seen it before. Here’s a new one: Biochemical, inhibition and inhibitor resistance studies of xenotropic murine leukemia virus-related virus reverse transcriptase:

We demonstrated that XMRV RT mutants K103R and Q190M, which are equivalent to HIV-1 mutants that are resistant to tenofovir (K65R) and AZT (Q151M), are also resistant to the respective drugs, suggesting that XMRV can acquire resistance to these compounds through the decreased incorporation mechanism reported in HIV-1.

So there are still scientists working on this really creepy virus that was created in a lab and infects human cells, but fortunately, not particularly well, though the statement below is not very comforting. Severe Restriction of Xenotropic Murine Leukemia Virus-Related Virus Replication and Spread in Cultured Human Peripheral Blood Mononuclear Cells:

In summary, our results show that XMRV replication and spread is severely restricted in PBMCs, but these cells can serve as a reservoir for generation of infectious virus that can potentially spread to cells that express low levels of these restriction factors.

It’s good for us that they are still studying it, because, although we don’t have XMRV, we still may have something very much like it. I still find the extreme resistance to trying HIV drugs for something besides HIV to be completely bizarre. AIDS drugs have been noted to be useful on occasion for Sjogren’s, MS and HTLV, but then generally nobody follows up even so. Here is the latest reference on clinical trials for HTLV associated leukemia: Clinical Trials and Treatment of ATL. I aways find it disheartening to read about HTLV, because it has been neglected for so long, even though it was isolated by Bernard Poiesz, Francis Ruscetti and their co-workers in Gallo’s lab over 30 years ago.

Speaking of dishearteningly slow progress, look at this paper from 2005: Association of human endogenous retroviruses with multiple sclerosis and possible interactions with herpes viruses. From the abstract: “Gammaretroviral HERV sequences are found in reverse transcriptase-positive virions produced by cultured mononuclear cells from MS patients, and they have been isolated from MS samples of plasma, serum and CSF, and characterised to some extent at the nucleotide, protein/enzyme, virion and immunogenic level.” And this one from 2010: The human endogenous retrovirus link between genes and environment in multiple sclerosis and in multifactorial diseases associating neuroinflammation. “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.” But nobody wants to try antiretrovirals on these patients?

Why is it such a stretch that the concepts learned from the AIDS epidemic could have vast utility beyond the treatment of that one well funded infection. Where are the drug companies??? We don’t have specific drugs and we don’t have any way to monitor the effects of the drugs we do have. So we are effectively stopped from studying something promising. A good percentage of the people who tried antiretrovirals experienced mild to moderate improvement for a period of time. Very little harm happened, even though it was a completely random and uncontrolled experiment. The drugs are not scary compared to many drugs that are given to ME/CFS patients every day. I can tell you there is a lot more possibility of harm from the SSRI’s, pain and sleep meds which are routinely offered, with no chance of positively impacting the disease process.

So, we as a community paid VIP Dx a bunch of money to tell lots of us we had XMRV. They are lucky the damages were only financial and not large enough individually for anybody to spend the effort to recover. Several people have sent me this: Transcribed  and posted on MECFS forums from Mass CFIDS/ME & FM Association’s Fall 2012 Lecture: (YouTube video of lecture by Dr. Byron Hyde)

Byron Hyde: The other thing he [Lombardi] says is that he studied under Dr. Suhadolnik at Temple University. So I picked up the phone and I [Hyde] phoned Robert [Suhadolnik] – who is a wonderful wonderful researcher man – and I said: ‘Tell me about Lombardi – who studied Chronic fatigue Syndrome under you and did research with you’.

He [Suhadolnik] said: ‘He never did’.

I said: ‘Oh ? What do you mean he never did ?’

[Suhaldolnik:] ‘Well, he came here for a few days and I got rid of him because he was a nuisance and he didn’t knew what he was doing and that was it.’

…one minute later:

Byron Hyde: I figure they (WPI) made somewhere between two and three million dollars on that [XMRV-test]. People all over Europe, people all over Canada, the United States, were sending their blood in. The other thing which is interesting is the Whittemore-Peterson advertises as a charitable institute. It is not a charitable institute. It’s got a Cameo institute on the floor below which is for fee for service. And they are there to make money.

Here is the WPI version: Date: January 6, 2013 (link)

Vincent C. Lombardi, Ph.D., Director of Research (…) He later continued to work in CFS-related research in the laboratory of Dr. Robert Suhadolnik at Temple University, studying the interferon regulated RNase L antiviral pathway and its involvement in CFS. (…)

The bio then goes on to give Lombardi credit for Dr. Mikovits’ ideas. Of course they also give him credit for the collaboration with Silverman. You’d think he wouldn’t be so quick to take credit for that. So let’s see what is left. He got a PhD at University of Nevada, Reno in 2005 and then invested in Redlabs and went to work running tests on humans. What was his dissertation about? When did the training happen that qualified him to be culturing retroviruses from humans? What prior experience did he have running a clinical lab? It would appear that anything he learned after finishing school must have been from Dr. Mikovits. Actually he was already trying to take credit for her ideas when I was there. He took me to breakfast in December 2010 and told me that it was really his discovery. He was rewriting history already, a dishonest post-doc, trying to discredit his mentor to a new colleague.

Please read Larry’s comments after the last blog (link). We were robbed and the WPI is still sucking up all the money. I expected a federal investigation of the lab, holding them accountable for the money they made on the tests, but it hasn’t happened. There seems to be no critical thinking on the part of the government agencies in question. So they have the grants, which will run their multi-year courses, irrespective of whether the money is producing anything meaningful or not. Nevermind that it is a very significant chunk of all the government money available to study our disease and it might be much better used. Why not give that money to Dr. Ruscetti or Dr. Lipkin? Or give it back to Dr. Mikovits, so she can get on with her work, as should have happened in the first place.

Posted last night on Facebook by Joan McParland:


As most patients are aware, Dr. Judy Mikovits has been forced into bankruptcy due to recent unfortunate events. A number of members discussed this issue at our monthly meeting last night and have made a decision to send some financial help to Dr. Mikovits.

The main reason for this action by some members of the support group is to show our support and also in an attempt to return the unreported kind acts and dedication shown to us by Dr. Mikovits on her numerous visits to N. Ireland.

Many more patients, worldwide, who have contacted me recently have also witnessed and benefited from the caring nature of the human being behind the scientist.

As from today, Dr. Mikovits is now free to return to work, we wish her well and hopefully she will be able to continue her dedication to helping find the answers we all so desperately need and deserve.

The entire situation has already been well summed up by Ian Lipkin’s quote below..

“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.”

On a much happier note, Michael Snyderman is still stable on full HAART. Stable cancer for 31 months. No chemo brain. And still no interest from the scientific or medical communities??? It is a travesty.

Dr. Snyderman’s update…

My study so far shows:

1. The combination of AZT+raltegravir has activity but is not sufficient to maintain the response.

2. Tenofovir has activity but is not sufficient to maintain the response.

3. Lopinavir has activity which so far is longer than previous responses. More data is necessary to know how long this drug will work.

4. A trial with more cancer patients is indicated.  We need to know what are the predictors for response and what is the optimal drug combination.  What is learned from cancer patients would potentially be valuable to patients with CFS.

Click to enlarge

Click to enlarge


Tonight’s song: Slip Sliding Away by Simon and Garfunkel

“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