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.
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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?