Jemal
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Which means the FDA, NCI and CDC are all spreading different messages about this virus
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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To get a better picture of the NCI (as well as FDA, NIH, state medical boards, Pharma, etc)
watch this sobering documentary. It, like "Under Our Skin", could be a documentary of M.E. and XMRV
if you just substitute the names of some of the players, patents, pathogens, and patients. It is really worth watching,
as it spells out precisely the tactics being used today.
http://vimeo.com/24821365
I havent read the link yet, but one thing that keeps bothering me is this: How can it be a contaminant and not in any patients if there is widespread agreement that XMRV IS a real virus in prostate cancer? It seems to me they want to have their cake and eat it. Firstly they say its "just" a contaminant, then that its been "made" from cell lines in labs and could be sort of real (but not in people) then they are lso happy for it to be a real virus in prostate cancer. Almost any expalanation so long as its not in the people with M.E/CFS
Hmm pretty fishy.
Which means the FDA, NCI and CDC are all spreading different messages about this virus
This is pretty funny actually, especially with CDC telling something akin to the truth and it being covered up!!
Lol, yes "pretty mousy!"
You only need to watch the above film posted by Leela to see how easy it is for "objective" science to be covered up, for individual scientists and doctors to be villified by the authorities if it doesnt fit in with their game plan. Im not discussing conspiracy theories here, but we are all intelligent adults and have the ability to imagine that this stuff does go on all the time.
I have lost two loved ones to cancer in the time since Dr Burzynski has made his discoveries and i feel very very let down. Thats aside from my own personal experiences with M.E, i have had to sit back and watcg in recent years as my eldest daughter is close to being diagnosed with M.E after 2 years of a mystery illness which at one point left her totally bedbound and dependent on me (at the time i was only about 25% functioning) my 11 year old son is beginning to also show signs of increasing ill health and loss of stamina.
My husband who was always the most fit and well person i have ever met is also worrying me as he keeps having new things wrong with him (insomnia, very vivid dreams, headaches, constant nausea,) I had a gradual onset over a number of years and now it looks like others in my family are going the same way. This is so frightening to think of.
When is this bullshit going to end and someone going to let the truth about M.E be known? How many more people have to have their lives ruined?
I am rubbish with the science stuff, but i do read it and i dont ususally comment as i dont feel able to, but despite the fact that it can sometimes lead to misunderstandings and misinformation i think its so vitally important that lay people, the sick and their carers keep up with the science and keep commenting and keep the Governments on their toes. No one else is going to do this for us.
I'm confused. Who exactly are you talking about here? Bad Science?Take away the bashing of patients, organizations, top scientists and doctors, and misinformation, there might be something useful under all that. Seems more like bullies on a playground, though.
I'm confused. Who exactly are you talking about here? Bad Science?
Hi, Justy.
This has probably occurred to you already in the past, but when I hear of a family in which several family members become ill, I wonder about things like carbon monoxide release from the home heating system, or toxic molds in the home, or something that is infectious and contagious. Have you looked into things of this sort?
Best regards,
Rich
6. Will the NIH be supporting more research on XMRV/MLV (and other retroviruses)?
Since 2009 we have seen a strong increase in interest in studies related to XMRV/MLV biology. As the number of applications increases, we anticipate more awards will be made in the years to come.
14. Where do the latest findings from NCI that an association between XMRV and chronic fatigue syndrome (CFS) is due to laboratory contamination put the XMRV interested/involved communities?
Although it appears that XMRV (xenotropic murine leukemia virus-related virus) is a contaminant and not associated with human disease, the National Institutes of Health (NIH) continues to fund studies to determine whether results of recent studies can be replicated. Additional information will be gained from the completion of two large studies (Lipkin, National Institute of Allergy and Infectious Diseases) and the Blood XMRV Scientific Research Working Group (National Heart Lung and Blood Institute) that were initiated to study any potential connection between XMRV/MLV and human health or risks to the blood supply. In addition, the NIH funds and will continue to fund peer reviewed, investigator-initiated research that seeks to understand the role that viruses, including retroviruses, play in the etiology of a variety of human diseases.
16. Is there still uncertainty regarding XMRVs role in CFS?
The body of evidence now indicates that XMRV does not play a role in ME/CFS. However, that does not preclude the need to replicate and confirm the results of recent studies, which could uncover other associations between ME/CFS and human pathogens.
17. Is there additional research planned/underway?
Although it appears that XMRV is a contaminant and not associated with human disease, NIH continues to fund studies to determine whether results of this study can be replicated and the lack of association between XMRV and ME/CFS confirmed. Additional information will be gained from the completion of two large studies (Lipkin, NIAID) and the Blood XMRV SRWG (NHLBI) that were initiated to study any potential connection between XMRV/MLV and human health or risks to the blood supply. In addition, the NIH funds and will continue to fund research that seeks to understand the role that viruses, including retroviruses, play in the etiology of a variety of human diseases.
18. Does the NIAID intend to continue to support the Lipkin study?
Yes. This laboratory-based study is designed to rigorously evaluate whether the presence of XMRV/MLV nucleic acids in the blood is associated with CFS. Researchers, working with clinicians in six regions across the United States, will compare blood and plasma samples from patients diagnosed with CFS to samples from healthy people who have not been diagnosed with CFS and who are matched to the CFS patients by age, sex, and geography. Study results are anticipated later this year.
http://orwh.od.nih.gov/CSF 2011/faq.htm19. Does NHLBI intend to continue to support the XMRV blood study?Yes. This study will compare results from participating laboratories across the country and improve our understanding of the assays in use. Results from this study, expected in the
Fall of 2011, will help determine whether XMRV and other related viruses represent a potential threat to the safety of the blood supply.
16. Is there still uncertainty regarding XMRVs role in CFS?
The body of evidence now indicates that XMRV does not play a role in ME/CFS. However, that does not preclude the need to replicate and confirm the results of recent studies, which could uncover other associations between ME/CFS and human pathogens.
Which means the FDA, NCI and CDC are all spreading different messages about this virus
Thanks Rich -yes i have considered some of these issues. I bought a carbon monoxide detector last year after suddenly thinking "imagine if it were that simple" We live in a new built eco home, no mold and i was sick before we moved here. Im not sure how to go about ruling out contagious things here in the UK. I have classic M.E style mitochondrial dysfunction as shown on Acumen labs test. My ex partner also suffers from ill health, mainly lung problems which i also have (we lived in moldy houses together many many years ago -so could have been a factor for that)
Sorry dont want to hijack the thread -thanks Justin for your reply as well.
by richvank: "or something that is infectious and contagious"
in my particular strata of ME/CFS, it is wildly infectious and contagious! and virile and debilitating. it causes havoc among families and connected social groups. it is just criminal that it continues to go unchecked while destroying lives. AIDS patients didn't even get this kind of Long-term denial. btw, my cohort seems to be the Lake Tahoe sub-type.