I just finished my first month long intensive with a young patient: mild HBOT, neurofeedback, discontinuing meds. She was fantastically responsive, which says to me that Ali’s improvement wasn’t a fluke. The illness is movable, but pretty much everything that the medical profession has to offer is counterproductive, not uncommonly trapping patients in a place that can be worse than death. So much unnecessary suffering! How different my life and the course of my illness would have been had I known what I know now, what to do but, more importantly, what not to do. Then there’s ASD, GWI (and GWI like illness that came after the Gulf War, because it’s still happening in the military) and atypical MS. Not even mentioning the Big C. And quite possibly the entire spectrum of autoimmune disease.

My husband, son and a couple of my son’s best friends were also here for the last two weeks, spring break senior year of high school, sort of a pre-graduation present. As a result, I did some throwing myself off the proverbial cliff, because I didn’t want to miss anything I might possibly be able to do. To my own surprise, I didn’t crash. Not even a little. I couldn’t go on the epic hikes they did, but I went on the night manta ray snorkel trip out of Kona (don’t advise it though:) and a six hour fishing trip. Six hours of using my muscles on a rocking boat. When I got home that night, my body was buzzing and I figured I was going to pay for sure. I did a little oxygen hoping to avoid the inevitable PEM. Went to bed. Woke up out of sorts, but not sick or in pain. Amazing. Clear sign of continued improvement. Lots of personal stress too, working out the changes in our lives, since my husband and I are having to come to terms with the realities of working thousands of miles apart. Persistent personal stress is usually my surest path to sicker, but I’m holding up better than well. Going uphill.

Ali too. She is excelling in her first two courses of online college at U Mass. Got a 98 and 100 on two exams last week. Planning to take a full load starting this summer term. She’s even been getting out a little with a new special friend. At home, she is mostly not suffering; her complaints are generally cheap stuff compared to the past. Brain works. Her life has meaning and joy. Major improvement in a couple of years.

I’m right at that place where you say, “Be careful what you wish for.” Coming back from the dead was so much larger than life. And I returned with a feeling that my medical mind is clearer than it’s ever been. Now I have to do the work:). Dealing with the mundane is hugely difficult; my brain is longing to stay in the big picture. I’m currently emerging from a period of endless set-up followed by a trip to computer hell, multiple independent services going down at once, new computer dying when I needed it to treat patients, changing EMR and it wasn’t smooth, on and on. My patients have been very understanding and I know they are rooting for me. I’ve been unable to respond to some public email and I apologize, but I simply haven’t been able to keep up. I’m sorry if you wrote and I didn’t answer.

I’ve been trying to digest the following paper, which seems very important to me: Identification of XMRV Infection-Associated microRNAs in Four Cell Types in Culture. This helps to define the gene regulation piece that is so clear clinically. But other viruses regulate cellular microRNA for their own benefit as well, including EBV and enteroviruses. Post polio syndrome is clinically similar to CFS. Personally, I suspect the oral polio vaccine as the culprit in my own case. I vividly remember the inoculation via sugar cube and how lucky I felt to get it very early, since my father was a pediatrician. I had symptoms in the years after that. An unusually high number of people with the disease are 58 or thereabouts right now, or a parent is. It would be much better for the human race if it was the live attenuated enteroviruses that they gave us intentionally that has made us sick after so many years, a possibility since enteroviruses persist and also regulate gene expression. Adventitious retroviruses contaminating vaccines and other medical products, rescuing ERV’s, some of which have freely infected most of the human race, is a much darker vision. I hope I am wrong. Responses to antiretroviral drugs, however, suggest that I am not; it is amazing that so much time has passed and it still isn’t even on the table for discussion. In the meantime, I learned recently that high risk babies are being given monthly injections of “humanized” monoclonal antibodies to prevent RSV. Antibodies that are 90% human 10% murine.

 Primavera by Ludovico Einaudi

Aloha nui loa

A certain apathy has set in. The hangover after the party. After years of reading scientific papers every day, it’s hard for me to do it now, because what difference will it make anyway? In the past, the comments on this blog reflected growth and movement within the community. Now it is mostly polite, not as contentious, but with a new lassitude; the tracker still seeing lots of the same people, but after all, what’s left to say that requires 300 comments? The news is all bad. Waiting for Lipkin; like waiting for Godot…

The apathy is especially severe for the professionals involved. The scientists who have the wherewithal to actually crack the case are pretty much gone. The doctors who were interested in collaborating for the WPI aren’t. Everybody pretty much went back to what they were doing, almost relieved not to be bothered anymore. XMRV is dead. Phew, don’t have to think about that anymore. Too bad it made so much sense, but the science doesn’t support doing anything about it clinically. Exempli gratia: Role of psychological aspects in both chronic pain and in daily functioning in chronic fatigue syndrome: a prospective longitudinal study. With friends like this, who needs enemies?

In the meantime, I am the doctor of last resort for a small group of ME/CFS patients with longstanding intractable illnesses, who have already been everywhere and done everything. Even so, they are improving with very gentle measures. Pulsed high dose oxygen, Deplin, Vitamin D, basic supplements, a few herbs. Treat the hormone dysfunction to the extent possible. Stop or wean unnecessary medications (most). Treat associated conditions like PCOS, which is extremely common in younger women with the disease. A few dietary recommendations. Primary care management from a provider knowledgable of their disease. Nothing heroic or dangerous. Primum non nocere.

In addition to the basics, I have one moderately ill, very difficult to move patient doing extremely well on Viread and I have one patient trying Ritchie Shoemaker’s VIP (vasoactive intestinal peptide) protocol, under my direction, still early days. I have one intractable pain patient with biopsy proven neuropathy that has improved with oxygen and Trental, an old safe drug that has been used with some success in the ASD world.

In my last practice, I treated Lyme patients with HBOT at very high pressures for long treatments. They often “herxed”. At the time, LLMD’s were my advisors and the “wisdom” was that this was a good sign of eventual response. I was using doses of oxygen designed to kill bugs and I did have a few patients go into remission following this treatment (without antibiotics). I now think the herx is a cytokine storm and a bad thing if it goes on for more than a short time. I also treated some patients who were undiagnosed “mystery illness” patients, despite extensive workups by good doctors, such as trips to the Mayo Clinic. It is now clear to me that those patients had ME.  Knowing what I know now, even with access to a chamber that could go deeper, I wouldn’t go beyond 1.5 ATA. I am now using a soft chamber that goes to 1.3 ATA (4 psi). I’m again combining hyperbaric oxygen with neurofeedback and finding them synergistic, as I did before. I have been meaning to write about neurofeedback for a long time, and will do so soon, or better still, I will try to prevail upon my mentor, Siegfried Othmer, to write a guest blog. Information about neurofeedback, Sue and Siegfried Othmer and their contributions to the clinical world of neurofeedback can be found at EEG Info and The Brian Othmer Foundation.

I have now heard from quite a few people, in addition to my own patients, that have tried normobaric oxygen by concentrator or tank with various delivery systems, but all using >5L/min for a half hour at least a few times a week. Responses vary from nothing to “wow”, maybe 50% clear responders. It seems to help more noticeably with sicker patients and be especially useful for intractable pain, the toughest of the tough to treat.

I have also heard from two people in the UK that are availing themselves of one of the charity chambers and finding it helpful. My understanding is that they will treat anyone with a neurological disease, so neuroimmune illness qualifies. I do not believe that it is necessary to be referred by a doctor, but I am not positive about that. Maybe someone in the UK who has tried it will respond to this question. I have a patient now here for a month, that has responded beautifully to normobaric oxygen at home, 10L/min by non-rebreather mask, and is now being treated in the soft chamber with excellent early results. It will be interesting to see if with more experience she finds it more helpful than the concentrator alone. It has been suggested that pressure is an independent variable to increasing partial pressure of oxygen alone for unknown reasons, possibly related to encouraging mitochondrial biogenesis.

I have heard only one patient report of normobaric oxygen causing worsening. She is not my patient and this happened quite a while in the past when she was also undergoing Lyme treatment, so I wonder if it wasn’t a “herx”. Otherwise I have heard of no complications that didn’t involve the use of pressure, which ups the ante a bit.

Deplin is a big hit for some, impacting mood, energy, stability. It causes dose related insomnia in people who are sensitive to it and has no effect on people who are not. I have one patient who had an idiosyncratic brief depressive reaction to it, but typically it is overactivating if the dose is too high. I have a couple of patients who think it helps in important ways, but who can tolerate only a very tiny dose, requiring powdering a tablet and dividing into multiple doses. Although there are some OTC supplements labeled L-methylfolate, as far as I can tell they are really 5-MTHF and not the same as prescription Deplin. Deplin comes as a generic DuLeek-Dp, which is not much cheaper and one of my patients thought not as effective. I am advising my patients to try folinic acid and 5-MTHF as well, always one at a time, with B12 and B-100 (unless pyridoxine is a problem, as it is for two of my patients).

As I have said many times before, the prohibition against antiretroviral drugs is insane. While the run on rituximab starts, and will soon kill a few people, tenofovir is not available for anybody but AIDS patients, though it now comes as a liquid for children under two years of age with HIV. It is in clinical trials as prophylaxis for healthy people at high risk; for that purpose, it is turning out not to be effective alone, so is being tested in combination. There has been a rationale for trying reverse transcriptase inhibitors for a wide range of problems for a very long time. Sporadic reports suggest efficacy for autoimmune diseases, but are never followed up. It isn’t in any way outlandish to think that replication incompetent ERV’s are involved in human disease and RTI’s might be helpful.

Even though the responses to arv’s have not been dramatic or complete enough for certainty, there are some of us who have chosen to stay on for a longer term, because we believe it is likely why or part of why we are better. The sum total of the negative experience has been a few self-limited early adverse reactions, some inflammatory flares at the beginning of therapy that resolved with stopping the drugs, one prolonged flare even after discontinuation of therapy and one case of pancreatits that was thought to be related to the drugs, though pancreatitis is not a known complication of the drugs in question. Personally besides the impact on my wallet, the only thing I’ve lost from trying arv’s is my once straight hair is now curly.

Meanwhile, after so much spilled milk, we’ve certainly learned a lot about how science happens, or doesn’t, and how little the needs of patients matter in the equation of what gets studied or learned and how that knowledge is applied.

At this late date, the person that has managed to do the most credible work is a 70 year old, sick oncologist in Buffalo. Dr. Snyderman has produced the most remarkable data. Earth shaking data, or it should be. Completely convincing, yet he has not been able to make the scientific world take notice and do the work. He has written to many, many scientists. Some do not even bother to answer.

Today’s song: All My Days by Alexi Murdoch

Friends are writing to me not understanding why I don’t turn my back on Reno and stop thinking about it… I wish I could, but I am getting mail regularly about how poorly patients are being treated currently; please read the guest blog by Christine Douglas on Khaly Castle’s blog CFS Untied. Also I am unable to back away, because Judy Mikovits is my friend and she is in my daily life. She is suffering a great injustice and it is really hard to stand by, watch, and do nothing, especially when that injustice directly impacts all of us. I can count the number of research scientists who give a damn on two hands, and they take out one of them? Sue her for their own failings. She lost before she got to open her mouth. Donors got angry at the actions taken by the leadership at the WPI and stopped sending money and that’s her fault too? Kangaroo court. They might as well just lynch her and get it over with. It is completely and utterly wrong. Dr. Mikovits and I should be deep in the first clinical trial of tenofovir for ME/CFS, not fighting with the Whittemore’s. It is truly a pathetic situation, all completely unnecessary.

While Dr. Mikovits has been financially and professionally ruined, and faces the possibility of jail, Harvey Whittemore is being investigated, with a lot of resources thrown at it, for very circumscribed campaign donation issues, rather than the whole enchilada. He’s allowed to peddle influence, but within circumscribed rules which he allegedly violated, the penalty for which seems to be fines. One would expect the penalties for playing out of bounds wouldn’t be too stiff since it was all set up by politicians for politicians. The very serious problems at the WPI and VIP Dx, that have had direct negative consequences for patients don’t seem to be entering into it, at least not yet.

Ali and I still seem to be beating the odds, with a general very slow uphill trend for both of us. My eldest daughter moved back home with her children almost a year ago and she said recently that she thinks we are both better than when she moved in, and much better than two years ago. I wish I could show it in numbers (other than the TGF beta-1’s and C4a’s already reported here, new ones pending as I write this), but reports will have to do. We are now following NK counts and function, and a cytokine panel, but we don’t have pre-arv baselines. Ali remains on Viread, Isentress, Vitamin D, Deplin, oxygen and treatment for PCOS, Prometrium, Actos, Metformin. She continues with modified Meyer’s cocktail infusions, but we have stopped glutathione as she had an idiosyncratic reaction to the last infusion (not allergic and not dangerous, may have been batch related). She is tired of getting stuck, so we may be reaching the point of diminishing returns. We shall see. She will go longer than she has since we started them while I am in Hawaii for over a month. She started a couple of online college courses and so far, no problems at all. She is anticipating ramping it up to a full program in the summer. MCS is currently her most limiting symptom, but it is much better than when it first started a year or so ago.

The last time I reported, I had been forced to go off Actos because of edema. Initially, coming off, I had an inflammatory flare, but the edema resolved and has not returned. I got back to feeling about as I had while on it after a few weeks. My numbers reflect that it was doing something good and my glucose is again a little high (my insulin is low). Time to watch my diet. I tried Lexiva again, but still couldn’t tolerate it, due to worsening sugar sensitivity and again, inexplicably, CNS symptoms that HIV patients and normals are not reported to have from it. I am a canary. Drugs are almost always bad for me, or more bad than good. My current regimen is Viread 300mg, Cozaar 100mg, Vitamin D3 5000 units, Armour Thyroid 1/4 grain, Aspirin 162mg, Prometrium 200mg, compounded topical hormones (estradiol, estriol, testosterone) and oxygen. I also tried a 5 day wash out of Viread to see if I felt any better without it and did not; rather fancied that I felt better on it. I am doing quite well, though I have my moments, mainly stress related, and there’s been a lot of stress. Sleep remains delicate, and a sentinel symptom. I am back in Hawaii seeing patients now and will be here long enough this time to see if the physical lift I experience here lasts or fades. My home in Santa Fe is at 7000 feet; in Kapaau, I am almost at sea level. I generally feel better when I leave Santa Fe, which always involves going down in altitude.

I am starting to hear some very negative things about GcMAF (in addition to some early positive reports), so I would like to urge those trying it to exercise caution. I would not “push through”. The negative reports sound like worsening inflammation, “cytokine storm”, sometimes after initial improvement. It never made much sense to me; it seems like pushing in the wrong direction. Our macrophages are already over-activated.

The last word from the NCI, Multiple Sources of Contamination in Samples from Patients Reported to Have XMRV Infection by Kearney et al, senior author John Coffin, seemed desperate to me. I don’t understand how the patient samples got contaminated with one thing and the controls with another. How did that happen if the specimens were all handled in exactly the same way? It isn’t addressed in the paper. Seems suspicious to me. And of course, everybody continues to ignore the biggest question, which is this: by their own admission, they can’t seem to keep these viruses from spreading around and infecting human cells in their labs, so why are they sure that these same viruses, or viruses like them, aren’t infecting human beings? Oh yes, most human cells have restriction factors. That is what they are relying on now. Seems like pretty thin ice to me.

And meanwhile, the CAA is simply delighted with their latest idea. An institute without walls! Why bother with walls? Great gig for them to protect their fat salaries, while sleeping with the CDC. It’s all in our genes. Everyone is relieved. They remain our captors. I don’t know how they keep managing to offend me with almost everything that comes out their mouths and press. I hold their incompetence directly responsible for much of my suffering. Crying for new leadership. Most of the patient community with advocacy experience holds them in disdain. What a mess we are in. Who can we trust?

I still think what I thought. Nothing I have seen or heard has seriously challenged it in concept. Our disease is completely consistent with a retrovirus or retroviruses; I think it will turn out to be not just one virus, but several or even many. Vaccines and other biomedical products are the most likely source, though there may have been natural occurrences as well. The intentional mass breeding of sick animals for our own purposes probably had something to do with it. The viruses may exist at the interface between endogenous and exogenous infection, explaining why it is all so difficult to unravel. Defective, non-replicative virus may be at work also. Recombination events happen. There are common symptoms in family groups, but there is variety between groups also. Presence of virus is necessary but not sufficient. Genetics and environmental factors are at play as well. There is a range of pathogenicity and potential for contagion. Some patients don’t know anybody else that is sick. Others have watched their whole families go down, one by one. I have even been in touch with a patient who believes s/he is contagious for an illness of insidious onset that is spread by casual contact. Not my experience at all, but there is no reason why it isn’t possible. What is unbelievable is that it still isn’t a priority to find out what’s going on, even while I read figures like .4% of the population of Europe has ME/CFS, 2.6% of children in one city in South Korea are autistic and 20% of the population in the US has a rheumatic disease. And then there’s cancer. Something is very, very wrong. The ostrich act isn’t going to cut it. We live longer, but with a very heavy burden of morbidity.

Please join us in the new X Rx Forums, getting under way, after lots of technical difficulties. Katieann has been diligently working on it, and it now seems to be running smoothly. Thank you, Katieann! We are requiring that people use real names, or an alias if necessary, but that I “know” who everybody is. We are not trying to reproduce any other existing forums, but to create something a little different, treatment oriented and a bit safer and gentler. So far, everyone is being very polite, maybe a little too polite:). Almost all of the people who have chosen aliases are in the UK, for very good reasons. It is interesting how attached many are to their handles, becoming part of an identity, but for this forum, we are asking folks to use names, their own if at all possible. Except for the first two forums which are public and visible on the web, everything is as private as we can make it, though there are no guarantees of course. We have a no advertising policy and specific medical advice is prohibited. I have set up a private “Round Table” for doctors and scientists. I hope some of the scientists reading will join us. Please register with your first name. If the name is already taken, use the first initial of your last name also. Drop me an email if you feel the need to use an alias.

A hui hou kakou malama pono…

Tonight’s song: Novim’s Nightmare by Cat Stevens

I keep thinking that I am done writing about the WPI and will get back to writing about my real life, but the noise from Reno continues to be deafening. Like everyone else, I was waiting to see what happens with the FBI investigation, when I got an email from Annette Whittemore. Publishing personal email is distasteful, but after serious consideration, I’ve decided that said email was written by a CEO of a non-profit, still begging my readers for donations. Their final communication, included below, is from Carli West Kinne, Annette Whittemore’s niece, who works for the WPI as an attorney. This blog is my answer.

My response to Mrs. Whittemore and Ms. West Kinne is that everything I’ve said in my blogs is my opinion, based on my own first hand experience, and true, to the best of my knowledge. Much of it is documented in the public domain. I would be happy to share it all, except that full disclosure would require violations of confidences from sick patients. I have asked only questions that a legitimate nonprofit should be ready and able to answer.

In addition, there is no malice in my blogging, malice being a legal term. I believe in my heart that it is in the best interest of my readers to hear what I have to say. I am aware that the NIH is answering patient inquiries that the WPI is innocent until they send in evidence of their own guilt:). In the meantime, Dr. Mikovits is guilty until proven innocent, has no lab or financial cushion. In fact, she doesn’t even have health insurance and can’t qualify for unemployment because she was fired, even though it was arguably without cause. The “Wings of Hope” flew away with my hope when they took away Dr. Mikovits’ access to her lab.

I would like to make it perfectly clear, that I will continue to publish my opinions here, irrespective of any intimidation. If sued or subpoenaed I will write about that too. It is best to stand up to bullies. It is also best to speak out about a wrong that you see, even if your toes are right up to the edge of the quicksand. Especially if your reason for not speaking out is because of possible retaliation.

The First Amendment of the Constitution of the United States protects my right to speak freely. I am entitled to discuss and invite discourse on topics of any concern to me and to my readers. I will not apologize and I will not be silenced. If contacted again, my next call will be to the ACLU.

What I didn’t say in my response to Mrs. Whittemore, included below, was how much I would have loved to be able to write nice things. Even after I was fired, I held out hope that would be the case. I held that hope longer than I should have. The enormity of the lost chance is hard to take in. Instead of anything hopeful or uplifting, here is my latest “conversation” with the WPI, now complete with a lawyer letter.

The first email from Annette Whittemore, dated February 20.

Subject: Civil discourse

Jamie and Heidi,

I have seen what you have written about me. It is very painful and ugly.   Obviously you think it is ok to libel me and try to hurt my reputation and that of this institute.  You should know that there are innocent people who come to work every day to try to help this institute and help patients like you.  They are hurt by your words.  Our researchers work six and seven days a week for you.  They are hurting because of you.  You should know what your actions are doing to innocent people, like my family members, all because you have decided you know something about me or think that I have done something wrong.  I would like to know what you think I’ve done or said so that we can clear the air once and for all.

I don’t believe in writing mean and ugly things about other people.  I would like to settle this in a civil manner.  We can start wherever you’d like.  If I can’t answer your concern, I can find someone in our organization who can.  If you’d prefer we can email individually.  Please let me know.

Thanks,
Annette

Here is my response of February  22.

Annette,

If you want to work things out with me, there are a few things that need to happen first. Otherwise I will continue to believe that the WPI is a black hole that you use for your own purposes, to benefit your family and friends, without regard for the patients to whom the institute professes to be dedicated.

1. Drop both the criminal and civil suits against Judy. Give her a reasonable severance package so she can get back on her feet. Apologize for your hideous public display of legal bullying.

2. Step down as CEO in favor of someone competent, someone with a prayer of retaining real talent.

3. Appoint a real Board of Directors, who are not your friends, but rather people with something to contribute other than pleasing you.

4. Account for the money and return what wasn’t used for research. I assume that the actual sum is likely larger than what I know about, which is at least $8 million: grant money already received, fundraisers, donations, contest money, UNR money? ear-marked for SPECT scanner and other medical equipment (I heard the figure $5 million on more than one occasion, a million for the scanner), $150K/month for almost a year from a private investor (yes, I do remember that you told me who it was, as well as the terms and, no, I didn’t name them publicly, though I don’t know why I am being kind to you). For all that money, I see one paper about cytokines that still stands, and Judy wrote it.

5. Return the small donations, from people who could ill afford them, that were earmarked for research or specific things for which they were not used.

Your newsletter was disgusting. It is time for you to justify your existence with more than propaganda. Why should anyone trust you? It is not possible to accomplish anything in the field without a reputation for integrity. If you cannot reclaim yours, it is better for the patient community if the WPI closes its doors. Why throw good money after bad?

Sincerely,
Jamie

P.S. Thank you for firing me.

I received this the day before yesterday, with an attachment, the letter from Carli Kinne.

Subject: harmful and damaging misinformation

Dear Jamie,

You are completely misinformed and your continued online communications full of false and misleading information are damaging to my reputation and to that of this non-profit institute.  Please stop now and apologize for the personal harm that you have caused me and this institute.

Annette

February, 24, 2011

Dear Deck-off Jones,

It has come to my attention that you are sharing incorrect information on your blog and encouraging others to write the National Institutes of Health (NIH) regarding Whittemore Peterson Institute’s NIH grant.  While your most recent blog is full of erroneous and harmful information, I am only interested in correcting the record related to WPI’s grants.  WPI is in full compliance with the NIH Grants Policy Statement, including but not limited to, all cost principles and reporting requirements.  As I am sure you are aware, claims against Annette Whittemore and/or WPI in a civil complaint are mere allegations that must be proven in court.  There is no “evidence in the public domain that the CEO of the WPI is a liar and fraud,” as stated in your blog.  There is also no evidence that WPI has misused grant funds, which you continue to allege in your blogs.  Furthermore, the NIH grant will continue under the guidance of a qualified principal investigator (PI).  There was no “pull involved” in order to change the PI, and to guess at such action taking place in your blog is damaging to all parties involved.  In addition, Dr. Lombardi does not have a financial conflict of interest as you continue to allege in connection with his relationship with VIP Dx, a company that is no longer in business.  As for the Department of Defense (DOD) grant, the DOD was pleased to approve Dr. Lombardi as the PI.  Please stop sharing false information and discontinue encouraging others to use this false information in correspondence to the NIH or any other granting agency such as the DOD.  These actions interfere with WPI’s business and harm WPI’s reputation.

Carli West-Kinne
Vice President and Legal Counsel
Whittemore Peterson Institute

To suppress free speech is a double wrong. It violates the rights of the hearer as well as those of the speaker. ~Frederick Douglass

IMEA petition at Change.org: INVESTIGATE POSSIBLE WPI/UNR MISUSE OF TAXPAYER FUNDS

I got a valentine and a newsletter from the WPI, proving yet again that their PR people are brain dead. Here is one patient’s response to her valentine, now making the rounds anonymously, since who wants to poke fun at organized crime and take credit for it:

Clearly demonstrating the need for comic relief in the midst of unrelenting insanity, this is from my email: “The theme of the next fundraiser should be I Hope You Dance In Shackles. Dress code is orange jumpsuits.” That’s what the community thinks of the institute that the NIH has decided to keep funding.

And where is the money coming from to pay those PR people, now that patient donations have no doubt dried up? It would appear the WPI has successfully pulled off a bait and switch and will keep the grants without a PI. The scientist who wrote the grants, the institute’s only real asset, has been tarred and feathered by the “Whittemore machine”, as one paper put it, and a judicial system that they appear to be manipulating. There is accumulating evidence in the public domain that the CEO of the WPI is a liar and a fraud. Witness her performance on Nevada Newsmakers, after she knew the results of the BWG, where she still advertised XMRV testing, saying it only needed to be refined. The new PI has essentially no scientific credits to his name. Search Lombardi VC on PubMed and what comes up? He has never been a senior author on a paper. Besides his work at the WPI under Mikovits, now largely retracted, he was a junior author on two unrelated papers when he was a graduate student. The institute has no publications to its name that weren’t written by Mikovits. The grantors must be as brain dead as the grantees. Or there is pull involved.

It made me sick to read the newsletter. Over the top propaganda, but there will be people taken in by it, even though it is so blatant as to appear written intentionally to fool the simpleminded. WPI’s top 10 contributions…

#1 is a joke. The “Center for Translational Medicine”  is fairy dust. There is no science happening there to translate. There is an endocrinologist and a nice doctor I declined to hire, who uses HMD after his name (Homeopathic Medicine Doctor), and who says he can “resolve” autoimmune disease and “cure” allergies on his website. So far, true to form, the most common thing I’ve heard from patients about the “clinic” is that they don’t answer their phone. Sounds like the same old same old to me.

#2 through 5 are the fruits of the labors of their now denounced ex-PI. #6 is somebody else’s work. #7 and 8 are true, they walked a mile and gave Dr. Lipkin a lecture hall for a couple of hours last summer. #9 is an outrage since at least two of the three have openly withdrawn their support for the WPI. It is an insult to the scientists they are attempting to use. Name dropping. And #10, wow, you’d think they’d be ashamed to list contest money without telling those who toiled away what happened to it. Prove to us that it didn’t go to lawyers so that you could scapegoat your best friend for your own failings. @@.

But the WPI is getting the money anyway. Even as politicians from Harry Reid on down give away anything they got directly or indirectly from a Whittemore as quickly as possible. Yet the government still intends to send them a big chunk of the entire federal budget for our disease for the next three years, and if you believe their newsletter, Gulf War Illness too. The only information I could find on the internet, still lists Dr. Mikovits as the principal investigator (at the WPI).

How blatant does it have to be? There is nothing of substance there. A strikingly untalented PhD, one experienced lab tech and a Russian trained doctor who can only work in this country as a tech, because the US doesn’t recognize her training, known as “the magic eye”. Since it seems they can’t rely on science, apparently magic is needed..

Where did all that money go? The grant money, the patient donations, large sums of money from a private investor mentioned to me. It is true that there are a large number of salaries still to be paid; nineteen was the number Annette gave Dr. Lipkin in June at dinner, now minus Judy, Max, who has moved on, and me. So sixteen people unless there are more now. That’s a lot of payroll to keep three people working in a lab, Vinnie, a tech and the magic eye. For that, PR people, personal assistant, lots and lots of poorly designed space. By the way, the final straw in my being fired for saying what I thought, was my use of the word “nepotism” in a text to Harvey. In addition to the fact that my actually being determined to open a real department fit for an academic institution was becoming something of a nuisance. I’ve wondered if they didn’t hire me thinking I was too sick to make trouble.

Vinnie and the magic eye worked at VIP Dx. My understanding was that Vinnie was an owner of VIP Dx. Money was very short, so what did they do? My guess is they decided to jettison the research lab in favor of the commercial lab. Less people to pay. Bait and switch. Protect the investment.

What has the WPI accomplished, other than destroying the career of the only real scientist there, while burning through money like it was jet fuel? It was Dr. Mikovits that brought recognition to our disease. The Whittemore’s have brought only notoriety. And they are continuing to hurt the patient community by diverting funds that could be used productively to help us. The people who collude with such diversion are suspect in my mind. The Whittemore’s have been allowed to manipulate the justice system in order to muzzle the person who knows the most about what actually happened. She is prevented from telling her side of the story by the threat of jail. For “stealing” her own notebooks. How convenient for them.

While the scientist who did the work is blamed for everything under the sun, the patient community holds its collective breath awaiting the results of the Lipkin study, now a reparative effort, since Dr. Mikovits has been deprived of her lab. How can the people who did that even suggest that they are our friends. With friends like that…

Millions and millions down the drain. Why is there no accountability? Why is the FBI investigating political contributions, but not worried about misappropriation of government funds? Why is the FDA ignoring the lab?

It makes me really sad that what’s left to do is work against a negative, after all the hope we had, but it was false hope and what’s left is a sham, diverting funds that could be spent to help us. The patient community needs to object, and loudly.

Today’s song: Money by Pink Floyd

Unfortunately, as some of you can attest, I hit a technical wall with the forum when everybody’s mail was going to the wrong places and the program was allowing the wrong things to happen, with what looked like the correct permission settings. Just as I was about to pull the plug, Katieann Weatherford offered her considerable IT skills to the project. The forum is currently offline for a complete overhaul, but will be back soon with a real administrator this time. I learned my lesson. Every forum needs a technical wizard and lucky for us, it appears we have one. Thank you, Katieann!

I am committed to making the forum a safe place. When we are up and running, this time with explicit instructions of what to do to be activated to full user, you will be asked to fill out a profile. Your username will be your first name, but you are required to enter a full name in the profile. I strongly encourage everyone to use their real names, but if you must use an alias, tell me who you are, and please pick a name, not a handle, so people think of a person with an identity, rather than a word or acronym. I’ll keep track of who is using an alias, and keep those identities confidential, but a profile is still required with your real information, a few words about why you want to participate, and something about your background, including advanced degrees, if any.

The point is for participants to establish a real, or at least quasi-real stable persona, so that comments have a more complete context than the usual internet discussion. My experience with the blog has taught me that the anonymous nature of the internet allows people to say things that they would never say to anyone’s face. Much of that would never happen if people had to reveal who they really are. That said, I understand the various reasons why someone might feel the need to use an alias. I’m guessing that if I know who everybody is, it will be a friendlier and safer place. There will be a number of physicians participating, and I’m hoping some scientists will join us also, even if an alias is needed for comfort.

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A number of people have written to me asking if I know anything about Harvey Whittemore’s former business partners and if they are slimy or not; I don’t know anything about them. My reaction is it seems unlikely that they didn’t notice while they were robbed of 40 million dollars. But whoever stole what from whom, the numbers are so over the top as to be impossibly ugly. They burned through huge quantities of money, literally, in jet fuel, while begging from people living on social security disability. Promising to be working on a “cure”, they were spending gobs of money on private jets and country club extravaganzas. Kent Heckenlively writes about it in the  Age of Autism: The Case Against the Whittemores and the Importance to the Neuro-Immune Disease Community.

How could they have spent all that money, knowing what they know? How could they have left the research underfunded while wasting millions of dollars? How did they reconcile that in their own minds, knowing the extent of the suffering? And for the record, no, I didn’t see the extreme excess described in the lawsuit when I was there. I saw very wealthy people in the process of downsizing. I saw too much management and not enough actual work happening. I saw a lot of incompetence and a complete lack of accountability. The whole thing is so tabloid that it is embarrassing to write about. It is embarrassing to have been associated with them even briefly.

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And meanwhile the scientific community continues to slowly notice that their cell lines are indeed spitting out infectious retroviruses: Detection of Murine Leukemia Virus in the Epstein-Barr virus-positive human B-cell line JY using a computational RNA-seq based exogenous agent detection pipeline, PARSES. Lin/Flemington.

…it is readily apparent that MuLV, a mouse leukemia virus, can infect human B-cells. Knowledge of the presence of MuLV or other organisms harbored within cell model systems is important for establishing appropriate biohazard safety precautions.

And the good news for us:

Although the host status of many cell model systems are known, these associations have oftentimes been guided by prior knowledge which confines the discovery to the organism being investigated. The RNA-seq approach outlined here is much less confined by prior knowledge and is primarily limited only by the need for genetic information for the respective ectopic organism.

Why does questioning the safety of vaccines make one sound like a nut, in the face of a huge amount of anecdotal evidence suggesting we have a very big problem? The vaccine program is thought of as the one unequivocal win we’ve had with modern medical technology. Drugs are much iffier. Greater than 100,000 iatrogenic deaths a year from drugs in the US alone (an old figure, probably higher now). Killing microbes isn’t the solution; the bugs just get smarter. The increase in the number of people living to very old age, has less to do with modern medicine than it does with plumbing. If you look at who lives to extreme old age, they have not been utilizers of medical services or pharmaceuticals. Surgical interventions save some who otherwise wouldn’t make it. But with respect to the treatment of chronic disease, we have failed miserably. Very little progress since I decided not to be an internist for just that reason.

Only a  few things have been studied thus far, to rule out vaccines as a cause of autism or ME/CFS; nothing has panned out as the one and only explanation, since nothing explains all cases, no one particular shot or preservative. So that makes it safe to continue as we have been? Live attenuated vaccines are grown in cell lines known to express viral particles that can infect human cells in tissue culture, then injected into human beings, including very young, immunologically immature human beings. And not just one virus, but lots of viruses and pieces of viruses, subject to recombination events. I realize that nobody healthy or invested in the technology wants to look at such a pre-apocalyptic possibility. Better to assume that restriction factors are always present that make it safe. Of course simple retroviruses activate mutations that create favorable conditions for them. And latent retroviruses are activated by just the kind of environmental disasters that we have so promiscuously created.

I am not a religious person, but it keeps occurring to me that we are suffering retribution for the enormous cruelty that we have inflicted on animals, breeding sick animals on purpose, and then torturing them for our own needs. Our ability to manipulate nature has outstripped our wisdom. We are the collateral damage of scientific hubris.

[flagallery gid=1 skin=default name=Gallery]

The last photo in the gallery was an attempt in 1995 to fabricate a transplantable ear on the back of a mouse. In this case, an absorbable mesh was seeded with bovine cartilage and transplanted under the skin of an immunocompromised mouse. Bovine cartilage was used in this experiment, which was never intended to be used on a human subject,  but it was in anticipation of the real thing. Are we ever going to wise up?

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On another note, my husband and I just returned from a trip to Arizona in our RV. After years of looking at the same things day after day, I have developed a tremendous wanderlust; I’ve never seen the west. The RV lifestyle was something we always fantasized about doing with our kids. I think it was the ‘with our kids’ part that got in the way. Now it’s perfect for us, a chance to do something together that we both enjoy. Even though there are things I can’t do anymore, there are still many things I can do. Sitting things, like canoeing and fishing. Some days, even walking. The illness tends to cause separation. My physical limitations prevent the kind of travel we used to do, but if I take my space with me, it works amazingly well. Just seeing the scenery change from the truck window is too wonderful for words. My husband is an avid mountain biker and loves to find new vistas. We are sharing adventures again in a way that we haven’t been able to in a long time.

This trip was inspired by a request for a consultation from an essentially bedridden patient, too sick to consider travel to see me. The patient’s physician was enthusiastic about an infusion of new ideas and we made a house call together. Enthusiasm for going the extra distance is a hard thing to find in doctors these days, but there are still a few rare individuals out there who remember why they became doctors in the first place. I learned things from visiting this patient that I could not have, seeing patients who are mild to moderately ill in my office in Hawaii. Most of my patients travel from the mainland, so the sickest and poorest patients are excluded, but to really know a disease you have to see the sickest patients. One of the many oddities about ME/CFS is that the most ill are the most neglected. If getting up to go the bathroom makes you helplessly sick, a trip to the doctor becomes impossible.

The patient I visited had a physical finding I’ve never seen before, consistent with extreme orthostatic intolerance. Lying supine with a small pillow, raising both arms to 30° for a couple of minutes brings on an attack of intense, visible Raynaud’s up to the elbows, with sharp lines of demarcation over the lateral aspects of the 5th metacarpals and bright red discoloration of the hypothenar eminences. Very dramatic. Reproducible. Couldn’t possibly be psychogenic. Malpractice to even suggest it.

The medical community owes the patients an apology, though how do you apologize for decades of blind stupidity that cost people everything, including their dignity?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• A Novel Model of SCID-X1 Reconstitution Reveals Predisposition to Retrovirus-induced Lymphoma but No Evidence of γC Gene Oncogenicity‘
• Murine Leukemias with Retroviral Insertions at Lmo2 Are Predictive of the Leukemias Induced in SCID-X1 Patients Following Retroviral Gene Therapy

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

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

• Rescue of endogenous 30S retroviral sequences from mouse cells by baboon type C virus.
• Defective retrovirus-like 30S RNA species of rat and mouse cells are infectious if packaged by type C helper virus.
• Retroviral pseudotypes produced by rescue of a Moloney murine leukemia virus vector by C-type, but not D-type, retroviruses.
• Maturation of murine leukemia virus env proteins in the absence of other viral proteins.

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

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

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

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

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

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

Today’s song: Learning to Fly: by Tom Petty