Personal Report: Two Years On Antiretrovirals

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

Truth Is An Absolute Defense To Libel

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.


Here is my response of February  22.


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?


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.


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




Yes, Virginia, There Is No Santa Claus

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

Blowing In The Wind

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.


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.


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?


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?

Blowin’ In The Wind  by Peter, Paul and Mary


Instant Karma

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

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

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

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

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

Keep Paddling

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Houston, We Have A Problem

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

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

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

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

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

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

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

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

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

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

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

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

An Olive Branch

Hoping that everyone can relax a little, here’s yesterday’s song that I couldn’t figure out how to post from my iPhone. We could use a little levity, I think.


When I started writing this blog, it was with a sense of astonishment that the physicians treating the patients, Lyme and CFS, didn’t seem to recognize that they had a new quiver for their arrows. The few that did were quickly censured, or swore a few patients to secrecy. I had been housebound, sometimes bedbound, for years and never expected to return to work, so I didn’t care who I pissed off. Anything was better than the isolation. The good thing about not caring was that I learned to write authentically.

During my 25 years in practice, I didn’t interface at all with the scientific community. Doctors only. I had no idea about the realities of this parallel universe that so impacts what clinical choices are open to us. I thought that the Science paper would be hailed as a great breakthough; scientists and doctors would come together, bringing different things to the table. The pace of progress would accelerate. If only that had happened!

The scientists that I’ve criticized by name were Coffin, Stoye and Racaniello. The first two put themselves out there very early on in a way that appeared designed to stop progress. They also have a long history of publishing things together that minimized the risk, so aren’t clean on the issue and their opinions shouldn’t carry much weight. Dr. Coffin also took it upon himself to try to limit treatment options, my pet peeve.

Professor Racaniello is a media figure, so fair game. I admit to being influenced by hurt feelings in his case, because I wrote to him when I started arv’s, in the midst of the first blush of excitement, wanting to have a discussion with him about the science and he shut me down, much the way Jason did. And to me, the tee-shirt still seems over the top thoughtless, though I think now that he probably didn’t understand what he was doing. There are signs that he is growing, e.g. publishing Dave Tuller’s important piece on his blog.

I was angry at Dr. Singh when she published her negative paper, for the reasons I expressed back then, but essentially the same thing again; scientists trying to call the clinical shots, though in this case I understand that she felt that her former paper was too strongly in favor. I sent her testimonials from patients improving on arv’s at that time. My understanding from Dr. Enlander is that she is back on the case. I thought her a lovely person when I met her and I am glad she is again working on our behalf. The Mt. Sinai initiative is very exciting. It is difficult not to fantasize about Dr.’s Shadt and Lipkin putting their heads together.

And Jason. Sorry Jason, I didn’t mean to hurt your feelings. I hope you learned something from our scuffle. No hard feelings on my end.

I hope I haven’t forgotten anyone. A virtual olive branch offered to all, even those most aghast at my choices…

Believe it or not, there are scientists that share with me, and I protect their privacy. I swear I’ll disavow knowledge of our friendship to my dying day if that’s what any scientist willing to share wants. At risk of scaring off the people we want to be here, there is a tracker on the blog, that allows me to see the IP address, location and the name of the server that loads each blog page, as well as how many prior visits from that address. Institutional servers give the name of the institution. There are at least a dozen readers at the NCI and another dozen who connect from NIH servers in a few different cities. A couple at the CDC in Atlanta. Readers at many universities and teaching hospitals, including a few at Columbia and Harvard. Cancer institutes around the country. Only a few of these people participate in the discussion. This is a potentially powerful thing. When I worked for the WPI, one of things I most wanted to do was establish lines of communication between physicians and scientists with all kinds of points of view. There is little to be learned from consensus when the truth isn’t even on the table. If there is a way to salvage some part of that dream, I’d like to.

Many of the scientists came to read about Dr. Mikovits’ travails, but I am asking them to think about the science with us. In particular, I’d like to know your reactions to Dr. Snyderman’s data. Please adopt a handle and share with us. Your secret is safe with me. I ask you for the sake of the patients that you are now beginning to know, be bold. I realize that you are constrained by the knowledge that a patient community can do what we did, but there are 17 million patients worldwide in the ME/CFS cohort alone, who need creative thinking from you. There is every indication that our disease is reversible until it is very advanced. The unclaimed talent in the patient community is staggering, if only the disease could be calmed, not even cured. Look at me. I am productive after years of being almost unable to care for myself, let alone anyone else.

I would like to put an end to the discussion about the lab science in the Science paper, the WPI, VIP Dx. Nobody knows the answers, including the protagonists. I certainly have no basis for evaluating any of it. I defer to the scientific community to figure it out; discussing it here is not productive. At this point, it is non-contributory and boring. Take it someplace else. This is also not the place to argue about whether Dr. Mikovits should be canonized or not, though she is my friend, and I am very sorry for what is happening to her. But from a clinical point of view it is irrelevant. This blog is about developing a model for treatment and how to best live with the disease.

Thank you to our mold warriors for giving it another shot here, and for keeping it appropriate this time. I for one, think that your experiences of improvement without medication are significant. I also understand why you feel the need to tell others in the hope of reducing their suffering, as well as your frustration when you feel you aren’t being heard. I have been interested in Ritchie Shoemaker’s pioneering work, since 2002 when we shared a couple of patients with Ciguatera poisoning.

And a big thank you to In Vitro Infidelium for the considered comment this morning. No invective or politics at all. Just a reply about the scientific discussion at hand. It was a breath of fresh air. Thank you for the excellent paper by Voisset et al. The quote you lifted in your comment is precisely the point. Although it clearly isn’t a simple, straight forward infection, there is epidemiological evidence that it is an emerging disease of very great proportions, not a stable situation. AIDS isn’t simple and straightforward either, without a test, in that infected people can remain apparently healthy for a long time, or even indefinitely. Only a small percentage of people with HTLV ever become clinically ill from it. Inbred sick mice don’t get sick from their MLV’s, but wild mice and some other rodents can. All I am asking for is that it be studied, not shut down if this attempt fails. Also, that our therapeutic options not be limited by how slow the science will be to unfold, even in a best case scenario in which Dr. Lipkin finds something.

My hat is off to Dr. Lipkin. His finely worded communication to the patient community brought tears to my eyes. The only thing I would take exception with at all was the use of the word definitive. If by some quirk of fate, this study is completely negative, we beg you, use those specimens to take the next step.


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

The Tip Of The Iceberg

We are driving from Dallas to Santa Fe today, so I have only an iPhone to write on. I started this as a comment to respond to In Vitro, but got carried away. It is off the cuff and there are unsubstantiated statements (and probably typos), so I anticipate critcism. Yes, this is loose. I am ever hopeful of a meaningful discussion between scientists, doctors and patients, so I tolerate all the ugliness in the comments. I have no interest in or time for moderating the comments on this blog. I wish the more annoying elements, nasty and repetitive, would cease and desist. Say it once or twice, not twelve or fifty times. It isn’t any smarter after repetition. And I don’t understand the need for disrespect and reactions verging on paranoia. There are lots of smart people reading. If we could engage that talent for the greater benefit, we might get somewhere. 

In the paper under discussion, the group from Sardinia seemed to think they were dealing with “virions” and that they could reliably measure viral load. I am on an iPhone so can’t cite chapter and verse. There are more clues in the references from that same paper. That work was done years ago already. Not replicated or retracted. No dismissal as contamination. Just nothing. I guess MS doesn’t rate all that much better than we do. The lack of curiosity on the part of a small community of scientists sitting on top of a powder keg is disturbing and difficult to explain. 

I do not, and will not read ERV’s blog, so please do not reference it. She wrote about me a long time ago in a way that made it clear that she is not only narrow minded, but completely lacking in compassion, as are many of the characters in this movie. No credibility as far as I am concerned. So if there is something you would like me to read, please give me the papers, not some graduate student’s interpretation. So far, I’ve seen nothing to suggest that I’m wrong about anything of substance. I keep waiting for somebody to make me think harder. Do you have something better than, it isn’t true, because it isn’t in the literature? Do you have a better theory? 

I was not implying that MSRV is the causative agent in our disease. I was making a case for the possibility of a similar endogenous retrovirus being involved. Or for one or more defective sequences to have been rescued by otherwise harmless simple animal retroviruses. Or, or…

As for gender disparities, the fact that more women are diagnosed with CFS and there are more males with ASD is not incompatible with their being related infectious diseases; the male brain may be susceptible earlier in life. Females are apparently more susceptible at puberty, post-partum and during perimenopause. All broad trends; male and female individuals can get sick at all ages. Vaccines implicated quite often (both live attenuated and killed), in both ASD and CFS, but not consistently, like everything that has been looked at. 

The work of Andrew Mason on a beta retrovirus associated with Primary Biliary Cirrhosis and an antimitochondrial antibody suggests overlap with our disease. A mitochondrial defect is implicated in the pathogenesis of Parkinson’s Disease and mtDNA mutations may be involved. One of the autoimmune markers that shows up commonly in ME/CFS is anticardiolipins; the inside of the mitochondrial membrane is rich in cardiolipins, a phospholipid common to mitochondria and bacterial membranes. If anyone would look at the epidemiology in a big way, I suspect a pattern of maternal inheritance will show. Lots of reasons to study our mitochondria. 

Looking for it is a mess, because it is a mess. It isn’t one thing. Lots of sequences recombining with lots of other sequences. Some replicative, some not. One group looks a bit different than another, but with notable similarities. Members of family groups can have symptom clusters that resemble each other but are distinct from symptoms of other family groups. I predict that it will not be as neat as the work on MSRV.

Virus, genetics, injury. We are the canaries. The tip of the iceberg.

Tunnel Vision

If it looks like a duck, and quacks like a duck, we have at least to consider the possibility that we have a small aquatic bird of the family anatidae on our hands.
~ Douglas Adams

I have to hand it to Dr.’s Switzer et al for responding to the vaccine question. Even if it was a very literal response, the findings were imparted clearly and believably. They looked for mouse viruses in 8 vaccines currently on the market. None of the vaccines were grown in mouse cells and, not surprisingly, they didn’t find any mouse viruses. No MLV’s at all in vaccines produced from chick, macaque, guinea pig or hamster cells. However, they did find human, avian and porcine endogenous retroviruses that they already knew were there, plus a new hamster virus in the vaccine grown in hamster cells… but it was DNA only, not a speck of RNA, so no worries… No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines. Switzer. Their conclusion: “We found no evidence of XMRV and MLV in eight live attenuated human vaccines further supporting the safety of these vaccines…”

If it wasn’t so sad, it’d be funny. Here is a paper from almost 30 years ago that says that a replication defective ERV can be rescued by mixing it up in culture with primate cells: Maturation of murine leukemia virus env proteins in the absence of other viral proteins. Schultz, derived from this work: Molecular properties of a gag- pol- env+ murine leukemia virus from cultured AKR lymphoma cells. Rein.

What a concept! Rescuable incompetent ERV’s. They knew about it in the early 80’s, and knew that there were infectious animal retroviruses in vaccines, but decided not to worry about it. And why can’t these parenterally administered xenotropic and polytropic viruses infect humans? “Because they can’t”. “They are inactivated by human serum.” Now that certainly is sound scientific reasoning. And they accuse patients of poor scientific discourse? Scientists please, take your blinders off. There is a whole generation in which 1 in 100 is autistic.

This is where the science is, if anyone cared enough to apply it to us: Endogenous retroviruses and neighboring genes are coordinately repressed by LSD1/KDM1A. Macfarlan

Here are a few good ones:

Dr. Anon, PhD thinks I should do nothing for the next 10 years while I, my daughter and my patients deteriorate. We should all just wait while a bunch of jokers at the CDC try to figure out what the questions are. I know what the questions are. Anyone with critical thinking skills that has actually read what I have written on this blog (including the references) should know what the questions are. Whether or not one particular xenotropic MLV exists in humans or not is now quite besides the point. Not finding MLV’s in 8 vaccines that never came near a mouse cell doesn’t support the safety of anything. Even Switzer et al suggest that maybe they should look at batches of old vaccines, though my understanding is that they were mostly used up in the search for the origin of HIV. They also seem to think that maybe the monoclonal antibody folks should take a closer look into their products, e.g. rituximab, produced via an intentional fusion of mouse and human. They’ve been doing this since the ’70’s. Fooling Mother Nature. Would one of the scientists reading like to explain to us exactly how this is done? The literature is confusing.

But Dr. Anon, PhD, reading my blog, wants to “puke” because I am taking properly prescribed drugs for an off label indication? What a world! Tenofovir is prescribed for chronic Hepatitis B. Does that make you want to puke? We have non-HIV, non-HTLV AIDS, exactly analogous to non-A, non-B hepatitis before C was isolated. Wikipedia article: Off-label Use. The off-label prescribing of existing arv’s is completely legal. The only reason to prohibit it is because of the enormous financial implications if it works. Only a very few people have tried it. No disasters yet attributable to it, unlike most of the pharmaceutical alternatives; and to the scientists reading, you wouldn’t believe the dangerous crap my patients come to me taking, in combinations that have no research at all behind them to tell us about possible interactions. In my case, the only adverse effect of my experiment with arv’s that I can point to is that my straight hair became curly; this happens occasionally with chemotherapy and other drugs.

Tenofovir treats Hepatitis B. Raltegravir inhibits Herpesviruses. AZT has been noted to impact Sjogren’s, which seems to be overrepresented in our patient group. Protease inhibitors kill some parasites. I referenced a paper in the last blog in which it was reported that HAART brought about an impressive remission in a patient with advanced MS (and some of us, myself included, have MS light). Those “confounders” are good things about the drugs in clinical practice; all drugs have good things and bad things about them for a given individual. As a clinician, I love it when a drug hits two things in a patient, making it more likely that the cost/benefit ratio for that drug will be favorable for that person. However, the idea that my response to arv’s is because they controlled my Herpesviruses is almost as ludicrous as the idea that Dr. Snyderman’s cancer cells went down because of a placebo effect. Twice.

This seems like a good time to note that I have never had mono and am serologically negative for EBV. Since I was an ER doctor for 16 years and exposed to lots of mono, my body must be pretty good at keeping invaders out. Ali’s EBV tests are consistent with prior infection, and we both have low titer IgG for HHV-6, like almost everybody. There is really nothing to suggest that we have activated Herpesviruses as part of our picture, opportunistically or otherwise. Ali falls squarely into the Lyme group, not the activated virus group, and opportunistic infectious are not really a part of my clinical picture at all. I catch almost nothing. It’s the inflammatory effect of the physiological changes caused by the persistent immune shift to fight viruses so effectively that creates the subjective illness. Patients, and doctors, often confuse the symptoms of persistent inflammation with an active infection that needs to be killed or treated. There is also a subset of patients that catches everything and has ongoing problems with activated viruses. I have heard from people who have had mono and shingles numerous times.

Most novel uses of existing drugs are figured out serendipitously. Somebody with two things takes a drug for one thing and the other thing gets better. Occasionally, somebody actually connects some dots and tries something on purpose. If it gets reported, it is called a case study. In a sane world it would be followed with an open label trial and then a double blind placebo controlled study.

In response to the criticism that I’ve lead thousands of innocent patients down the garden path, please read what I’ve written, before jumping to conclusions. I have never said anyone should take arv’s. My point is that it should not be prohibited, and most definitely, the decision should not be in the hands of a bunch of lab scientists that have never treated a patient. A retrovirologist has no basis for an opinion about treatment at all. That they would presume to comment is a sign of disordered thinking right there.

As I have said all along, ours was never a good experiment. What I have reported here is strictly clinical medicine. We were on an uphill course for about six months before starting arv’s, after quitting Lyme treatment. I do think that antibiotics were making us worse and when we stopped them, we went uphill, though an LLMD might say our treatment had worked:). I believe that arv’s helped us, though incompletely, not surprising for patients that have been sick for many years, who most likely have a high proviral load that continues to replicate mitotically. We still seem to be doing better than might be expected, but I have no way of knowing how we would be at this moment had we never taken them. The only marker we had to follow, TGF beta-1, initially very high has normalized for both of us over a year and a half (see numbers posted here; the pending results from 11/30 were normal TGF beta-1 and elevated C4a, for both of us). It is a very bad disease and we both feel lucky that our suffering is reduced. I wish that the science was keeping up so that we might have a better way of monitoring our therapy. We need a viral load measure or RT assay to follow, understanding full well that we might have more than one virus each and replication incompetent contributors. My biggest concern is the possibility of viral resistance, not toxicity of the drugs.

As far as the arv elist is concerned, I try to create a safe place for patients taking arv’s to discuss their experiences. Occasionally, I answer a question, but mostly, it is patients talking to patients. Everyone on the list, thirty or so of them, decided to take arv’s on their own, and all have their own prescribing doctors, except for a few that live outside of the US. In my practice, since I am willing to prescribe arv’s for an extremely informed patient, I must not be pushing it very hard, since none of my private patients have yet swallowed an arv.

Unfortunately, it is still the patients least likely to respond who are trying it, people who have been sick for a very long time with advanced disease that feel like they have nothing to lose. Much scarier to contemplate, but with a much greater possible upside, is the question of what would happen if newly crashed ME/CFS or ASD patients were treated quickly after onset of symptoms. This obviously needs to be investigated, but in a controlled setting. It will be very expensive to do safely, so is unlikely to happen for either of these conditions (cancer more likely). People don’t like to be wrong and there are lots of wrong, powerful people in this story.

My husband has been acting CFSy lately. When his symptoms flare, I am always impressed that it must be an infectious disease. All four members of my nuclear family have certain common symptoms, e.g. painless ocular migraine, which was a rare condition when I was an ER doctor 17 years ago, and orthostatic intolerance, of a form that nobody had ever heard of a few decades ago. Vascular instability and autonomic neuropathy in four members of a nuclear family, two sick, two not. Husband and wife not even distantly related. I thank God every day that my son isn’t autistic. I vaccinated him selectively, for the wrong reasons, but I have heard from that woman out there who, like me, has CFS and a CFS daughter, plus an autistic son. Is it because I didn’t give him the Hep B vaccine (which is not a live vaccine, but causes persistent immune activation over a long period of time)?

I get letters now and then suggesting that I do not know how horrible polio and other infectious diseases were before vaccines. That isn’t true, I do know. But just because the vaccine program saved many people doesn’t mean that we shouldn’t look at problems that may have been caused by it, and modify our recommendations now for people at high risk, e.g. people with CFS and new offspring of ME/CFS women. We desperately need extensive epidemiological studies to find out what happened when. If you want to look at the bigger evolutionary picture, we have changed nature’s culling process. If you take the starfish parable from a few blogs back to it’s natural conclusion, throwing the starfish back is a mistake, because they are vicious predators that overbreed and damage the reef.

In the meantime, the backlash from the flash of illumination has started. The Mayo Clinic says SSRI’s (which many ME/CFS patients don’t tolerate), sleep meds, GET and ‘therapy’ are what we can have as far as treatment goes. That’s the best they can do for a million sick people? On their website: “More than 3,300 physicians, scientists and researchers from Mayo Clinic share their expertise to empower you to manage your health.” Shame on them. May the doctors that came up with this page never have to get sick, or have their child get sick, with a horrible debilitating disease and be faced with such options. May they find some shred of compassion in their hearts of stone before that fate can befall them.

I am writing to you today from the Louisiana bayou. My husband’s 50th birthday present a couple of months ago was our first RV, and this is our first trip. We have always wanted to try the RV lifestyle, but now even more so, since we love to be in nature and it is the only way that I can still travel comfortably. Our son was just accepted to Tulane with a big scholarship, so we decided to take him to New Orleans to help him decide what he wants to do. Ali didn’t come on this trip, but will come on the next one, shorter and closer to home. The trip has been exciting, to say the least. We survived the worst blizzard in 40 years in north Texas and a tornado warning in southern Louisiana.

I love the spontaneity and limitless possibility of seeing the world this way. Change is usually so difficult with this illness, but everything I need is close at hand and comes with us when we move. The pendulum of my disease continues to swing, as always, while I practice the art of transcending symptoms, living as many full moments as I can. Right now, my husband and son are fishing in the rain. We’ve had the worst luck with weather. Adversity is giving us all the opportunity to practice acceptance and work on our interactions in a close space. Like life, the difficulties have been punctuated by amazing moments; yesterday we watched from our canoe as a small otter caught and fought a huge fish, then defended it from a Great Blue Heron. This part of the country is very wild and alive. When I couldn’t sleep for a while last night, I listened to wonderful, unfamiliar night noises.

And the breaking news? Lo et al just retracted, saying the work was perfect, but the conclusion must be wrong, since nobody has replicated it yet, except for one other lab. Therefore, enough money wasted. Now there’s some ironclad logic for you.

Tonight’s song: The Wild Goose
by Kate Rusby