Discussion in 'General ME/CFS News' started by Firestormm, Jun 1, 2014.
more good bits
@Firestormm whats your view on this statement:
If HHS gave you the power to re-name CFS, what would you call it?
"Non-HIV AIDS. It is an acquired immune deficiency, beyond a shadow of a doubt."
So what would motivate her to use this description do you believe?
I guess you would have to read her book and possibly find out. Of course talking of ME or CFS (whatever your preference of name) as a 'plague' is rather sensational.
Nice word isn't it? Implies an infectious virus or bacteria. Mikovits was ever talking about XMRV and retroviruses and how it was spread through the air.
Kent Mc. is not someone I would take seriously either. Indeed them teaming up to write such a book made me even less likely to buy it or into their notions. Check out his 'work' on Austism and his promotion of quackery on his sites: actually I wouldn't. It's a risk to your health.
Doing my best here to be polite.
Non-HIV AIDS as a banner has been doing the rounds for a while. Promoted by some user called something 'Boston' if I recall. And it stemmed out of XMRV fiasco. Might also have been influenced by Klimas and what she said in her often misused quote.
When Nancy said 'I would rather have HIV than ME' the full quote was in relation to her work - with HIV and ME patients - and how relatively better understood, funded and treated HIV patients were. It was a good quote. But has been cut short in places - at least it was - to give a heightened sense of... I don't know what the word is.
Comparing ME to AIDS is inherently wrong in my view and for what it's worth. But people do. AIDS comes up and sometimes in the context of the organisation - the working together to find a cause to find funding to gain better research and reduce the stigma - these lessons would be better used in our 'community' but tend to get lost to the notion that ME is AIDS by a different name.
It's like a lot of things that are not currently understood and are marginalised. Some people choose to sensationalise to grab attention. Reaching for theories based on nothing or on very little. Andrew Wakefiled and MMR and Austism being another example...
I could go on. But will probably find this comment deleted when next I return.
Apparently we can't criticise anyone in this 'community' if we don't agree with them. Got to tow the party-line. Whatever the heck that is these days.
Here's a Q&A with Klimas I just found. I haven't time (need to get to doctors for exam) to dig out her oft-cited remarks about HIV and CFS but it's similar in context to this. It comes from Oct. 2009 so just following publication of the XMRV-CFS paper:
Things have changed obviously since then. But I think you can get the point she is making. Her point is still repeated now - but of course XMRV was proven a contaminant. Still I think Nancy would happily state her patients with CFS are less well cared for than those she sees with HIV and very sick. Shame the same can't be said for patients with HIV in other parts of the world of course who don't get treatment and do develop AIDS and die - horribly.
But those who still believe some sort of retrovirus - undiscovered/unreported/unresearched - might be responsible (or even is responsible) or even those who think it could be a virus: might also think 'NON-HIV AIDS' is a useful name for CFS or ME.
I do not.
@Firestormm I appreciate the information and the thoughtful evaluation you have given this response. I have been researching the Mikovitz story trying to understand the whole retrovirus hypothesis and put it into context with Cheney's virus outbreak proposal in Nevada in the 80's.
When I first saw Dr Mikovitz background in cancer/HIV, and her dedication to M.E./CFS research I was impressed and even though the viral proposal (I hadread) had come to a dead end I was surprised upon reading the interview above that, it seemed that she believed a virus was involved still (2014). However she does say in interview above she didnt believe causality, rather correlation which are 2 different things statistically.
What I thought was interesting was how the mouse research (allegedly?) created arange of new retroviruses via the research process. I'm not sure if this is true? Are there other studies demonstrating this?
Anyway, I feel (1 person sample) that the immune system is compromised by this disease M.E./CFS. Well I most certainly didnt have constant mucous, middle ear infection and fluid in the perycardium (chest pain) forno reason before I got sick. So whilst fatigue isa problem, I most certainly have a comprimised immune system.
So whilst I agree it is sensational and alarmist to use a label like non HIV aids. I do believe ME/CFS is an acquired Immune system deficiency. In regards to Boston, (Karen Lambert)she has been on her plight for many years. Here is testimony to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2 June 14, 2012(?) in the US about her Negative HIV AIDS. Here is her testimony:
I dont buy into this by the way. But its interesting.
Also check out Kent's comments here on PR a while back about Lipkin (read through to the end of the thread). Disgraceful smear merchant.
I am appalled that Mikovits has chosen to team up with Heckenlively.
As I said, I will be donating the price of their book to the microbe discovery project.
I would like to see the early 1990s retrovirus looked into. Dam i can't remember her name, the scientist from back then in oslers Web. And some type of comparison, was it the same 'thing' they were looking at or 2 different retroviruses and is technology different now and could show things differently to the 1990s retro? ?
Since AIDS means Acquired Immune Dysfunction, and I believe that's what ME is, I'm fine with calling it non-HIV AIDS. The latest research on AIDS finds the retrovirus imbeds itself in the patient's DNA and then the immune system can't deal with it. There's plenty of ME research that indicates the distinct possibility that some pathogen, perhaps several pathogens, do the same in ME.
And yes, it was Elaine DeFreitas. Info on her patent, which mentions a retrovirus she calls CAV:
Here is my problem. I think you need certain parameters to be considered for AIDS. I am not there, yet I have ME.
Again maybe a subgroup.
I DO NOT HAVE LOW CD4, I HAVE LOW CD56.
Is like saying Sojern is AIDS (low CD3), Lyme (CD57)...... Argggggg.
Idiopathic CD4+ T-lymphocytopenia, or ICL, is an immunodeficiency syndrome in which human immunodeficiency virus, or HIV, cannot be detected. Because HIV is the causative agent of acquired immune deficiency syndrome (AIDS), ICL can be referred to as Non-HIV AIDS. As in AIDS patients, Non-HIV AIDS patients exhibit reduced numbers of CD4+ T-lymphocytes, and many Non-HIV AIDS patients have developed the opportunistic infections or otherwise rare cancers associated with AIDS.
In Japan they call cfs natural killer cell disease as they find many with low nk function. Thats pretty much getting to the common aquired immune defiency without having to relate it to another disease,?? Researchers have also found many cfsers have poor cd8 t cell function.
NK/ T cell dysfunction i think describes us quite well going by whats found in research so far??
Is there really a reason to pay any attention to her anymore?
Frequent Detection of Infectious Xenotropic Murine Leukemia Virus (XMLV) in Human Cultures Established from Mouse Xenografts
To investigate the frequency of xenotropic murine leukemia virus (MLV) presence in human cell lines established from mouse xenografts and to search for the evidence of horizontal viral spread to other cell lines.
Six of 23 (26%) mouse DNA free xenograft cultures were strongly positive for MLV and their sequences had greater than 99% homology to known MLV strains. Four of five available supernatant fluids from these viral positive cultures were strongly positive for RT activity. Three of these supernatant fluids were studied to confirm the infectivity of the released virions for other human culture cells. Of the 78 non-xenograft derived cell lines maintained in the xenograft culture-containing facilities, 13 (17%) were positive for MLV, including XMRV, a virus strain first identified in human tissues. By contrast, all 50 cultures maintained in a xenograft culture-free facility were negative for viral sequences. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3218386/
Generation of Multiple Replication-Competent Retroviruses through Recombination between PreXMRV-1 and PreXMRV-2 2013 Aug 21
1. Krista Delviks-Frankenberrya, Tobias Paprotkaa*, Oya Cingözc*, Sheryl Wildtd, Wei-Shau Hub,
2. John M. Coffinc and Vinay K. Pathak
Retroviral recombination allows the reassortment of mutations and genetic polymorphisms, leading to the generation of RCRs from otherwise defective parental viruses.In addition, these studies indicate that retroviral recombination is crucial for generating recombinants by combining functional cis and trans elements from the parental proviruses and that selection for these functional elements results in the formation of novel RCRs.
Conclusion: To determine their potential to generate RCRs (replication-competent retroviruses), we transfected PreXMRV-1 and PreXMRV-2 into 293T cells and used the virus produced to infect fresh cells; the presence of reverse transcriptase activity at 10 days indicated the presence of RCRs. http://jvi.asm.org/content/87/21/11525.long
Xenotropic MLV envelope proteins induce tumor cells to secrete factors that promote the formation of immature blood vessels.
Murgai M1, Thomas J, Cherepanova O, Delviks-Frankenberry K, Deeble P, Pathak VK, Rekosh D, Owens G. 2013 Mar 27;
Together these results indicate that xenotropic MLV envelope proteins are sufficient to induce the production of factors by tumor cells that suppress vascular SMC differentiation, providing evidence for a novel mechanism by which xenotropic MLVs might alter tumor pathogenesis by disrupting tumor vascular maturation. Although it is highly unlikely that either XMRV or B4Rv themselves infect humans and are pathogenic, the results suggest that xenograft approaches commonly used in the study of human cancer promote the evolution of novel retroviruses with pathogenic properties. http://www.ncbi.nlm.nih.gov/pubmed/23537062
Infection of xenotransplanted human cell lines by murine retroviruses: a lesson brought back to light by XMRV 17 June 2013 Front. Oncol., | doi: 10.3389/fonc.2013.00156
Heidi A. Hempel1, Kathleen H. Burns1,2, Angelo M. De Marzo1,3 and Karen S. Sfanos1,3*
1Department of Pathology, Johns Hopkins University School of Medicine, Baltimore, MD, USA
2Institute of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA
3The Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Infection of xenotransplanted human cells by xenotropic retroviruses is a known phenomenon in the scientific literature, with examples cited since the early 1970s. However, arguably, until recently, the importance of this phenomenon had not been largely recognized.
The emergence and of Xenotropic Murine leukemia virus-Related Virus (XMRV) as a cell culture contaminant as opposed to a potential pathogen in several human diseases, notably prostate cancer and Chronic Fatigue Syndrome, highlighted a potential problem of murine endogenous gammaretroviruses infecting commonly used human cell lines.
Subsequent to the discovery of XMRV, many additional cell lines that underwent xenotransplantation in mice have been shown to harbor murine gammaretroviruses.
Such retroviral infection poses the threat of not only confounding experiments performed in these cell lines via virus-induced changes in cellular behavior but also the potential infection of other cell lines cultured in the same laboratory.
Thus, the possibility of xenotropic retroviral infection of cell lines may warrant additional precautions, such as periodic testing for retroviral sequences in cell lines cultured in the laboratory.
How Can Xenotropic Murine Leukemia Virus-Related Virus (XMRV) Contamination be Prevented
February of 2014. This study looked at how to prevent the infection of lab workers. The publication describes XMRV as a lab creation which is capable of infecting human cells and integrating its genome into that of the host. Therefore, XMRV virions and XMRV-infected cells are considered as biosafety level 2 organisms. http://aem.asm.org/content/early/2014/02/10/AEM.04064-13.abstract
Thanks @Ernie in laymans terms then. Yes, experimenting on mice can cause new viruses which can then infect lab workers and contaminate the mice involved in the experiment. Great sounds like a top job for the poor lab technicians. Or does it make them9lab technicians) immune to the new virus. And is the virus then passed on by breathing, touching coughing etc?
Infectious Disease Risk to Public Health Posed by Xenografting
This chapter was drawn largely from the workshop Session II: Infectious Issues. Thus, the majority of the chapter summarizes workshop presentations. Where useful for background, some sections have been supplemented with additional information. The chapter, however, is not intended as an in-depth analysis and summary of the field of animal-to-human infectious diseases. The possibility that infections can be transmitted from animals to humans is of concern not only because of the threat to the health of the recipient, but also because such infections may be transmissible to others, creating a public health hazard. Further, such infections may be due to previously unrecognized organisms, making detection difficult if not impossible. If the time from infection to clinical symptoms is long, the risk of widespread transmission is greater, because during this time the new organism may silently spread from person to person, as happened with human immunodeficiency virus (HIV).
Emergence of a new public health risk appears to be a two-step process (Morse, 1995). First, a new infectious agent is introduced into a given human population from other human populations, animals, or environmental exposures. Frequently these new agents are zoonoses, defined as animal microbes that can infect humans as well as the animal species from which they come. The second step is establishment and dissemination of organisms that prove to be infective and transmissible from person to person. The first step, introduction of a potentially transmissible agent into a human, could be accomplished by transplanting an organ that was infected with the agent. It is the second step of establishment and dissemination, however, that raises public health concerns, particularly if the agent is viral since current therapies for viral illnesses are limited.
Conclusions and Recommendations
The following conclusions and recommendations are based on workshop presentations and discussions, as well as review of relevant materials and extensive discussions among the committee. This chapter presents those conclusions and recommendations along with the key points that underlie them, but it does not duplicate in detail material presented in previous chapters of this report.
The progress of basic science in the field of xenotransplantation has been rapid, and clinical trials of specific applications of xenotransplantation are under way. Xenotransplantation may also be valuable for the treatment of human diseases. However, it is well recognized that infectious agents can be transmitted from animals to humans and that organisms benign in one species can be fatal when introduced into other species. Further, it is known that the pathogenicity of infectious organisms can change under a variety of conditions and that the effects of infection by some organisms, such as the human immunodeficiency virus, are delayed for years or even decades. Because xenotransplants involve the direct insertion of potentially infected cells, tissues, or organs into humans, there is every reason to believe that the potential for transmission of infectious agents (some of which may not even now be recognized) from animals to human transplant recipients is real. If established in the recipient, the potential for transmission to caregivers, family, and the population at large must be considered a real threat. The committee concludes that, although the degree of risk cannot be quantified, it is unequivocally greater than zero.
So, is this what definitely happened with Mikovits xmrv virus research and how the samples were contaminated?
If so do those lab workers and Mikovits herself nowcarry one of these new retroviruses? Or is that unknown?
I am so glad this brave lady has the courage to continue her work in the face of the enormous efforts to silence her and discredit her work.
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