Unfortunately, as some of you can attest, I hit a technical wall with the forum when everybody’s mail was going to the wrong places and the program was allowing the wrong things to happen, with what looked like the correct permission settings. Just as I was about to pull the plug, Katieann Weatherford offered her considerable IT skills to the project. The forum is currently offline for a complete overhaul, but will be back soon with a real administrator this time. I learned my lesson. Every forum needs a technical wizard and lucky for us, it appears we have one. Thank you, Katieann!
I am committed to making the forum a safe place. When we are up and running, this time with explicit instructions of what to do to be activated to full user, you will be asked to fill out a profile. Your username will be your first name, but you are required to enter a full name in the profile. I strongly encourage everyone to use their real names, but if you must use an alias, tell me who you are, and please pick a name, not a handle, so people think of a person with an identity, rather than a word or acronym. I’ll keep track of who is using an alias, and keep those identities confidential, but a profile is still required with your real information, a few words about why you want to participate, and something about your background, including advanced degrees, if any.
The point is for participants to establish a real, or at least quasi-real stable persona, so that comments have a more complete context than the usual internet discussion. My experience with the blog has taught me that the anonymous nature of the internet allows people to say things that they would never say to anyone’s face. Much of that would never happen if people had to reveal who they really are. That said, I understand the various reasons why someone might feel the need to use an alias. I’m guessing that if I know who everybody is, it will be a friendlier and safer place. There will be a number of physicians participating, and I’m hoping some scientists will join us also, even if an alias is needed for comfort.
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A number of people have written to me asking if I know anything about Harvey Whittemore’s former business partners and if they are slimy or not; I don’t know anything about them. My reaction is it seems unlikely that they didn’t notice while they were robbed of 40 million dollars. But whoever stole what from whom, the numbers are so over the top as to be impossibly ugly. They burned through huge quantities of money, literally, in jet fuel, while begging from people living on social security disability. Promising to be working on a “cure”, they were spending gobs of money on private jets and country club extravaganzas. Kent Heckenlively writes about it in the Age of Autism: The Case Against the Whittemores and the Importance to the Neuro-Immune Disease Community.
How could they have spent all that money, knowing what they know? How could they have left the research underfunded while wasting millions of dollars? How did they reconcile that in their own minds, knowing the extent of the suffering? And for the record, no, I didn’t see the extreme excess described in the lawsuit when I was there. I saw very wealthy people in the process of downsizing. I saw too much management and not enough actual work happening. I saw a lot of incompetence and a complete lack of accountability. The whole thing is so tabloid that it is embarrassing to write about. It is embarrassing to have been associated with them even briefly.
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And meanwhile the scientific community continues to slowly notice that their cell lines are indeed spitting out infectious retroviruses: Detection of Murine Leukemia Virus in the Epstein-Barr virus-positive human B-cell line JY using a computational RNA-seq based exogenous agent detection pipeline, PARSES. Lin/Flemington.
…it is readily apparent that MuLV, a mouse leukemia virus, can infect human B-cells. Knowledge of the presence of MuLV or other organisms harbored within cell model systems is important for establishing appropriate biohazard safety precautions.
And the good news for us:
Although the host status of many cell model systems are known, these associations have oftentimes been guided by prior knowledge which confines the discovery to the organism being investigated. The RNA-seq approach outlined here is much less confined by prior knowledge and is primarily limited only by the need for genetic information for the respective ectopic organism.
Why does questioning the safety of vaccines make one sound like a nut, in the face of a huge amount of anecdotal evidence suggesting we have a very big problem? The vaccine program is thought of as the one unequivocal win we’ve had with modern medical technology. Drugs are much iffier. Greater than 100,000 iatrogenic deaths a year from drugs in the US alone (an old figure, probably higher now). Killing microbes isn’t the solution; the bugs just get smarter. The increase in the number of people living to very old age, has less to do with modern medicine than it does with plumbing. If you look at who lives to extreme old age, they have not been utilizers of medical services or pharmaceuticals. Surgical interventions save some who otherwise wouldn’t make it. But with respect to the treatment of chronic disease, we have failed miserably. Very little progress since I decided not to be an internist for just that reason.
Only a few things have been studied thus far, to rule out vaccines as a cause of autism or ME/CFS; nothing has panned out as the one and only explanation, since nothing explains all cases, no one particular shot or preservative. So that makes it safe to continue as we have been? Live attenuated vaccines are grown in cell lines known to express viral particles that can infect human cells in tissue culture, then injected into human beings, including very young, immunologically immature human beings. And not just one virus, but lots of viruses and pieces of viruses, subject to recombination events. I realize that nobody healthy or invested in the technology wants to look at such a pre-apocalyptic possibility. Better to assume that restriction factors are always present that make it safe. Of course simple retroviruses activate mutations that create favorable conditions for them. And latent retroviruses are activated by just the kind of environmental disasters that we have so promiscuously created.
I am not a religious person, but it keeps occurring to me that we are suffering retribution for the enormous cruelty that we have inflicted on animals, breeding sick animals on purpose, and then torturing them for our own needs. Our ability to manipulate nature has outstripped our wisdom. We are the collateral damage of scientific hubris.
[flagallery gid=1 skin=default name=Gallery]
The last photo in the gallery was an attempt in 1995 to fabricate a transplantable ear on the back of a mouse. In this case, an absorbable mesh was seeded with bovine cartilage and transplanted under the skin of an immunocompromised mouse. Bovine cartilage was used in this experiment, which was never intended to be used on a human subject, but it was in anticipation of the real thing. Are we ever going to wise up?
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On another note, my husband and I just returned from a trip to Arizona in our RV. After years of looking at the same things day after day, I have developed a tremendous wanderlust; I’ve never seen the west. The RV lifestyle was something we always fantasized about doing with our kids. I think it was the ‘with our kids’ part that got in the way. Now it’s perfect for us, a chance to do something together that we both enjoy. Even though there are things I can’t do anymore, there are still many things I can do. Sitting things, like canoeing and fishing. Some days, even walking. The illness tends to cause separation. My physical limitations prevent the kind of travel we used to do, but if I take my space with me, it works amazingly well. Just seeing the scenery change from the truck window is too wonderful for words. My husband is an avid mountain biker and loves to find new vistas. We are sharing adventures again in a way that we haven’t been able to in a long time.
This trip was inspired by a request for a consultation from an essentially bedridden patient, too sick to consider travel to see me. The patient’s physician was enthusiastic about an infusion of new ideas and we made a house call together. Enthusiasm for going the extra distance is a hard thing to find in doctors these days, but there are still a few rare individuals out there who remember why they became doctors in the first place. I learned things from visiting this patient that I could not have, seeing patients who are mild to moderately ill in my office in Hawaii. Most of my patients travel from the mainland, so the sickest and poorest patients are excluded, but to really know a disease you have to see the sickest patients. One of the many oddities about ME/CFS is that the most ill are the most neglected. If getting up to go the bathroom makes you helplessly sick, a trip to the doctor becomes impossible.
The patient I visited had a physical finding I’ve never seen before, consistent with extreme orthostatic intolerance. Lying supine with a small pillow, raising both arms to 30° for a couple of minutes brings on an attack of intense, visible Raynaud’s up to the elbows, with sharp lines of demarcation over the lateral aspects of the 5th metacarpals and bright red discoloration of the hypothenar eminences. Very dramatic. Reproducible. Couldn’t possibly be psychogenic. Malpractice to even suggest it.
The medical community owes the patients an apology, though how do you apologize for decades of blind stupidity that cost people everything, including their dignity?
Three cheers and a Brava! to Katieann. And many thanks, Dr Jamie, for providing a place for an alternative to the “usual internet discussion”.
Love the AZ pic!
Well, gee, the naturopathic physicians have said all along, no use to kill bugs. It’s their substrate, the person they live on or in that has the problem. It is too soon to tell, but I suspect that genetics is not gonna pan out as hoped either. Back to good old right living.
Interesting, your association of religion with retribution. It is more likely a mere consequence of more general erroneous attitudes
Right on Jamie with the blog updates, your goals, your support for animals and, of course, your observations on WPI. I just cried at reading the part about the Whittemores spending so much money on jet trips, while bleeding ill people of their few dollars from disability income. I’ve read anecdotes about people doing fundraising for WPI and never getting an acknowledgment or thanks. It’s just bizarre and so incredibly self-serving.
I have always been a skeptic since reading about the financial wheelings and dealings of the WPI patriarch. I always wondered what was going on and what their goals were, despite having a sick child. I do think that they thought their ticket to continuing the good life was with Judy Mikovits’ discoveries, then they were furious when her studies were refuted, so they took it out on her. And then they did what we all know in retaliation, and are suing her for financial damages, when her income was far less than theirs and she was the one who did the work.
The main thing is that research is going on. What you just wrote about retroviruses is interesting. I wish I understood a bit more scientifically, but I know that whatever is discovered, will be summarized on various blogs for those of us who aren’t researchers or medical professionals, but who are suffering with this darned disease every day.
Right now, I feel like I’m phoning in everything in my life, as I can’t do things. I’m grateful for my computer, the Internet, my phone, my TV and my NY Times, as well as the library at this point — and for food and newspaper deliveries.
I so look forward to the exciting developments which will be written about right here, hopefully, in a kind and tactful way, with contributors realizing that those of us with the disease need to, as you put it well recently, read about concepts, not minutiae.
And don’t forget when talking about vaccine the thiomersal…not enough mercury to cause outright, obvious poisoning…but more than enough to open the blood brain barrier to the viral soup.
On the other hand, do not discount your bodies ability to control viruses delivered straight to the bloodstream. Our hunter-gatherer ancestors for eons were butchering in the long fading light of early evening while the vultures circling overhead had the same effect as floodlights on a car lot…all the top predators will respond quickly, including the neighboring tribe just over the hill. And quite often the hunters were using obsidian blades, just as sharp as any scalpel produced by our industrial society up to about 20 years ago. Your ancestors probably had direct blood to blood contact weekly, which occurred on a continues basis for at least a few thousand centuries.
So I would recommend that the antivirals anyone takes have the ability to penetrate the brain/cns.
You do realize that every blog you’ve written is damages against Dr. Mikovits.
Thanks Jamie. My thoughts are with that patient, I’m so glad you were able to see her.
How does (the medical community) apologize for decades of blind stupidity that cost people everything, including their dignity? By someone, with ample and appropriate authority, someone like Dr. Collins or Kathleen Sebelius, expressing it simply and sincerely with words: We are sorry. This is what happened. This is what we did (or didn’t do). This is how we were wrong. And we are sorry.
This won’t solve the problem. It won’t give me back my health, my life, every indignity that I have experienced, or every capacity and dream I have lost. Nothing can do that now. But that’s not what apologies are for. Just because the problem can’t be solved doesn’t mean it does no good to acknowledge it, and place ownership of it where it belongs.
An apology would take the responsibility, the burden of proof, the stigma, the disbelief, and the resulting sociopathic treatment of patients off of them, and place it on the shoulders of those who knew better and did nothing. It would incline medical professionals and the broader public towards treating PWCs with informed care and compassion rather than disdain and disbelief.
When I hear Dr. Montoya speak about this subject, in his very kind, thoughtful manner, tears come to my eyes. An apology gives someone back their dignity. It acknowledges to the victim, you should have never been treated this way in the first place.
AND IT IS STILL GOING ON. DAY AFTER DAY.
The forum will be ready when it’s ready. If there’s one thing this illness can teach us, it’s patience. Patients patience.
To follow on from a couple of points in your blog, Dr. Jamie, the research you link to by Zhen Lin et al, “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.” could give part of the background on why depleting B cells with Rituximab has had such good results in Norway, perhaps. It also links with Grossberg’s research on what he called JHK in 1989, the retrovirus he sequenced and uploaded to Genbank in 2010 http://www.ncbi.nlm.nih.gov/nuccore/HM119591.1 As I remember, he found the JHK gamma retrovirus in EBV cells too.
As to ancients staying away from drugs, I have one exception to prove the rule – my father, a GP for many decades, who is approaching his mid-nineties. He used to dose us up with everything, giving raspberry paediatric penicillin suspension for every sniffle, and I know he dosed himself too. To belie that, I remember him saying, not long before retirement; “We can kill some of the bacteria with antibiotics, we can dull pain and we can cut the bad bits out. Apart from that, there’s not much we can do”
Apropos of nothing….
Bless you. Thanks for being here.
Glad you got to travel. Thanks for giving us the above change of scenery too :)
Love the new website and blog format, Jaime. Thank you for all of your and Katieann’s efforts to make it happen.
I received some disheartening news about my great niece. She will be 6 months old this week; and when I asked if she was standing, (our family is notorious for walking early), I was told she hasn’t been able to roll over yet. This shocking news made me wonder if the vaccine she received 24 hrs post-natal was responsible. My niece and her husband are healthy and active. As far as I know, I’m the only family member on either side with neuroimmune disease. I would like to send my niece some literature about the possible harmful effects of vaccines on children. and would appreciate any recommendations.
Mentioning the cruelty to animals is one thing….not to mention the cruelty to humans as well. Several vaccines (including mmr, chickenpox) come from aborted baby boys and girls.
I would love to see a vax vs. non-vax study. The vaxers say there aren’t enough non-vaxers. I know hundreds. I’m not a conspiracy theorist, but I’m starting to wonder if they’re afraid of what they’ll find.
I hope we don’t degenerate into an argument about reproductive rights for women and stem cell research, etc. We have strongly held opinions on this. It wouldn’t be great to do this here. There’s too much to discuss. I’m for whatever helps those of us with ME/CFS.
For instance, did others read David Tuller’s article in the Feb. 7 NY Times Science section. It was a mixed bag, as far as I am concerned. It reviewed Dr. Mikovits’ discovery, then the refutations, the disappointment thereafter. Also, the so-called psychological-basis theorists, but then some of the physical symptoms. And a quote from a ME/CFS sufferer who thinks it’s a retrovirus.
I’m not sure what Tuller actually concludes here. Any views?
There is a very good discussion about Tuller’s article in Tuesday’s NY Times over at ME/CFS Forums. It has made me consider further the positive aspects of the article and even Coffin’s quote and Rivka’s statement about a retroviral link.
Maybe all of this attention is just good, even though it’s a bit qualified.
On the other side of this, just read at the forums website that Lombardi got the NIH grant. Wonder what is going on, especially after recent legal developments.
Love the blog
Re vaccines possibly causing harm:
Norsk Pasientskadeerstatning has given 3 children compensation due to a connection between narcolepsy and the swineflu vaccine Pandemrix.
“Both Sweden and Finland have provided compensation in similar cases”
Norsk Pasientskadeerstatning (NPE) is a national administrative body under the Norwegian Ministry of Health. Patients who believe that they have suffered an injury as a result of treatment from the health service have the right to claim compensation.
http://translate.google.no/translate?sl=no&tl=en&js=n&prev=_t&hl=no&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fnrk.no%2Fhelse-forbruk-og-livsstil%2F1.7986792&act=url
Thank you for this information, Eva. It is so appreciated. Norway should be congratulated for awarding compensation to victims. Do you know if the pharmaceutical companies are paying these claims? Here in the US, we get minimal press coverage on this issue much less compensation.
The US government has a program for compensating parents/children who have been harmed by vaccines. Recently I read of one award to the child/parents where the child developed autism due to vaccination. This program is to indemnify the vaccine manufacturers against lawsuits and has been in place for decades. Basically, the government acts as the vaccine company’s insurer, at taxpayer expense.
The National Vaccine Injury Compensation Program
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682198.html#app7
In the rare event that you or your child has a serious reaction to a vaccine, a federal program has been created to help pay for the care of those who have been harmed.
For details about the National Vaccine Injury Compensation Program, call 1-800-338-2382 or visit the program’s website at http://www.hrsa.gov/vaccinecompensation.
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One out of 5,000 autism cases found in favor of plaintiff and settled out of court:
http://www.cidrap.umn.edu/cidrap/content/other/news/sep2711vicp.html
“In decisions issued in July 2009 and March 2010, the court ruled against compensation for any of the six test cases (re: autism), the article notes. Two of the cases went to an appeals court, which upheld the claims court’s decisions. But in a case separate from the omnibus proceedings, one involving a child who suffered developmental regression and a seizure disorder after vaccination, was settled out of court. The reasons for setting the case were not divulged, but the outcome suggests there was a belief that the parents’ case would have met the court’s criteria for establishing causation, the article says.”
So the taxpayers pay the cost of vaccine injury while Big Pharma skates. Why would the greedy bastards at the top make any changes when they have all that going for them?
Thank you for info, Lilly C
Really looking forward to the forum, with collaboration among scientists, physicians, NGOs, carers, sufferers, natural activists, and others, for all biomedically- and politicall-related diseases.
Private funding for biomedical research seems more needed than ever.
I went to the forum site with different topics and am having a hard time figuring this out and how to sign up. Yes, this is CFS speaking and its related cognitive issues, which happens in every single technological thing, whether it’s signing up or trying to figure out a cordless phone or install AIM on my program or fix a printer.
Kathy, please email me if I can help you get registered,
~ KA
admin@x-rx.net :+)
We should all be suggesting to all the Nevada politicians that they donate the Whittemore’s contributions to a good ME/CFS charity / research project. Can you all name one?
Dr Enlander at Mt Sinai.
Why not Simmaron Research……….here is their site
Simmaron Research
Simmaron(http://simmaronresearch.org/index.html) is currently outfitting the NIDA BioProcessing Centre laboratory with a generous gift from the Neuro-Immune Disease Alliance (www.nidalliance.org). Our laboratory will have the capacity to fractionate blood into various sub components including serum, plasma, and mononuclear cells, when it is ready for use. This capacity coupled with access to a rich, well-defined biobank will make collaborative research studies into the causes and biomarkers of CFS/ME more exacting. We are very excited and thank NIDAlliance for their support.