Dr. Judy Mikovits is a scientist with real integrity.
From what I understand, this is what happened...
When she was at the Whittemore Peterson Institute, she found retroviral material (for lack of a better word) in many patients' blood via an NIH study. Unfortunately, what she found got tied to -- and should not have been tied to -- Dr. Silverman's XMRV clone. (Silverman is from the Cleveland Clinic.) Because of that, in the end, most of the subsequent replication studies did not pan out. When researchers, such as Alter and Lo, went looking instead of retroviral material, in general, they found what Mikovits had found. That is why Alter and Lo originally said that their study was a confirmation study.
I would like a researcher to follow up on Mikovits's work -- putting aside Silverman's XMRV clone -- and see what they can find.
All this is detailed in Mikovits's book, which is well worth reading. Here it is
http://www.amazon.com/Plague-Scientists-Intrepid-Retroviruses-Syndrome/dp/1626365652
And if you don't want to read the whole book, then I strongly recommend reading this interview with Mikovits on ProHealth.com, which sums up some of the points covered in her book
http://www.prohealth.com/library/showarticle.cfm?libid=18960
Government funded retroviral research in organic diseased ME CFS patients won't be possible, unless an
independent research group can demonstrate proof of person to person transmission. Only then, by subsequent failure to act, would this create any medico-legal pressure, from the consequences of not acting in the patients and wider societies best interests (public health protection initiatives). It's unlikely we'll ever hear about retroviruses and CFS again, as small scale researchers are very poorly funded and easily dominated by a 'failure to detect' paper from a big name research group.
Despite Dr Mikovits's services to the NCI, we know what they did to her because of her position of stating the possibility that cancer research may have caused novel infections. That was naturally met with some worry (understatement).
Just look at Dr Mikovits's favourite friend, John Coffin's (NCI) recent stance on HERV's and cancer, never mind Xeno's. Note the languge used in the title also. HERV's aren't a rumour. In cancer it may be unproven, but a rumour? It's
logical chronic infection and inflammation leads to cancer in a host. Rumour is a silly word, but fits the narrative of the message perfectly, hence they used it.
Endogenous retroviruses and human cancer: is there anything to the rumors?
http://www.ncbi.nlm.nih.gov/pubmed/24629332
The problem we have is this:
CFS is small fry, even if it's potentially many times more prevalent than HIV. What is
the problem is infection mediated
cancers.By validating retroviruses being associated to CFS, the same tests can be used in those with cancer and autoimmune diseases (higher risk of cancer also), thus potentially validating retroviruses causing cancer also, if you allow CFS through the net. They all know this. They also know the patients know this.
If this became the case, that members of the public have lab created cancer retroviruses, the research biologicals industry would be to blame, as their experiments (in cancer research) may have inadvertently caused
air born vectored retroviruses. Potentially cancer causing also.
There is absolutely no way,
anyone is going to allow that to become public knowledge, hence no funding = no assay, and Dr Mikovits and anyone else of her mindset will be discredited (at the least) if they tried to suggest this. As she is.
If we are walking around with HERV's in CFS and other similar conditions (Lyme) it's all simply too expensive to treat once infected, so the concept has to be silence, and to stick with 'unexplained chronic fatigue', or the more hilarious one, a 'post treatment Lyme' (that never had any treatment), and was never 'post' as the symptoms and disease is worsening in the patient!
Lyme and CFS scandal. Both have been left to fester, to grow out of control in terms of actual disease control (no research = no treatment = more disabilities and deaths) and now tens of millions are estimated to have CFS and Lyme. Some say it may be far far higher if silent carriers exist. (Imagine congenital CFS with no symptoms until adolescence = still infected). With no test though, this is just palmed off as conspiracy BS by people who won't investigate the potential idea, using science (As Dr Mikovits and others wanted).
If the immune suppressive agent(s) behind the reason you can't shift Lyme (or it's co infections) so you end up with a 'CFS' (of varying types and severity) are novel bacterias (e.g. Bartonella Like Organisms) that become more pathogenic by using retroviral genes or whole xenotropic retroviruses, then naturally this cannot be allowed to become public knowledge either. It may even validate 'Chronic Lyme' (said not to exist) as a new, different illness to Burgdoferi Lyme.
It makes sense why Dr Mikovits's work is now federal property and will never be given back to her. By confiscating her property (research notebooks), they know what she knows, and will always be able to come up with a negative campaign against her if she ever tries again to get the CFS community behind her, or indeed any group. The biggest paranoid concern, is the Autism community. The numbers for Autism in the USA are now ridiculous.
What is of interest to supporting Mikovit's theories though, is this study:
Prevalence and Characterization of Murine Leukemia Virus Contamination in Human Cell Lines
Uphoff et al, 2015
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0125622
It shows that human cells lines
are infected with retroviruses after all, from scientists own unintentional doing. Hence Dr Mikovits, although not proven right, definitely, isn't proven wrong either. This paper could have been made public, used in the media to absolve her as being an alleged 'rogue scientist', and hey lets cut her some slack and let her do research, but of course we never heard about it and get distracted with this PACE BS and psychiatry that is totally irrelevant to the cause of ME and organic CFS. It's a sideshow.
Lets go back in time, to the study that was finalised when Mikovits was in jail.
A multicenter blinded analysis indicates no association between chronic fatigue syndrome/myalgic encephalomyelitis and either xenotropic murine leukemia virus-related virus or polytropic murine leukemia virus.
Alter et al, 2012
http://www.ncbi.nlm.nih.gov/pubmed/22991430
What one doesn't realise (at first) was the 3%-6% or so SFFV positive CFS samples (also matched in healthy controls)
were of importance as naturally the study title declares a negative finding, and we watched the streamed video of Mikovits denouncing XMRV on camera.
Except it wasn't negative. 3%+ of Americans, is around 3.1 million people walking around,
potentially, with unexplained immune reaction to what shouldn't be there - a brain cell infecting mouse retrovirus (SFFV)! Well that's not something we should ignore, although as you know, retroviral research into CFS has been dropped due to politics and worries over the total bill in treatment costs.
Yet from the Alter (aka 'Lipkin' negative XMRV/pMRV) paper':
1) No human should have an immune response to a neuroinvasive mouse cancer virus, that is a neurotoxin, and used in science research in xenografting in labs (by humans, not mice!). Naturally the elephant in the room is,
if genuine, how the hell did it get there? Answer = from humans mistakes. Dr Lipkin and all government scientists are silent on this. Being silent, isn't science, it's politics (or as scientists who don't also want to have their careers ruined will tell you), it's common sense. Common sense to keep your mouth shut over a political hot potato. Dr Mikovits didn't do that, she wanted to save lives now, not in 50 years when it's politically OK to set aside differences and use cost effective gene therapy/stem cells/vaccines.
2) In the CFS vs healthy controls (dismissed as proving there is no need to further look at this) it's the viral load that's important. If further science could be performed, and an assay designed, we could see if the 3%+ positive CFS patients had higher
viral load, than the 3% positive healthy controls. We know this from HIV. Viral load is an indicator to the doctor how sick the patient is and if there ARV's are working (along with other tests of course).
3) We don't know who the 'CFS' patients were and if they display classic neurological ME symptoms. They also weren't the same WPI patients, of the 2009 paper. So there's no consistency here. To be 'CFS' doesn't mean much. CFS can be a fatal disease, CFS can be self reported chronic fatigue, and a few symptoms. Which patient has the retrovirus if it's there? More likely, the one with neuropathy, O.I, allergies, autoimmune thyroid, POTS, heart problems and even cancer - note that if you had these explained reasons for your CFS you were excluded from the negative Dr Lipkin study, because then (technically) you don't have CFS!
4)
We don't know where the potential retroviral reservoir is in CFS. Until we know where to look, we can't really compare the patients vs healthy controls. E.g. If it was in the spleen we could then do spleen biopsies vs healthy controls, and say hey presto, the patient is 4000 times higher pathogen X or protein etc, than healthy control in that tissue.
Retroviruses are indeed valid theoretical reasons for chronic immune evading co infections in ME CFS (including Lyme) yet no one in power is willing to discuss this. Note also since this XMRV (misnomer), then SFFV debacle in CFS patients, Dr Montoya's samples were 85% positive with, with what?. Dr Lipkin dismissed this finding as probably worthless and never has discussed it since. We haven't been told
what these retroviruses were ,or the assay used so we will never know. We are treated as their academic inferiors, we aren't part of the closed club, and as patients, they know any news of a retrovirus in CFS would go viral (excuse the pun).
Message controlled. Public panic over. We can go back to
Chronic Fatigue and a
symptom based syndrome, not a potential accidental created infection (Lab/Vaccine vectored Xenotropic pathogen) or some other novel pathogen we don't know much about (E.G. BLO, non Burgdoferi strains of Lyme etc).
Which label is less hassle to control, in terms of the public demanding treatment and not having to worry about themselves or their kids getting cancer, chronic Lyme, MS, ME, Autism etc? Non HIV-AIDS or CFS?
Yup, it's chronic fatigue. Sounds innocuous, and as long as it's not linked to a potentially fatal pathogen, then it is innocuous. Discussion over. Repeat forever. When busted, just rebrand it with a new acronym, and call it 'real', call it what you want, call it a disease if you like, but never require diagnostic disease signs (e.g dysautonomia using a test), to be part of the new acronym proposal. That's what the IOM just did. Better, but you'll never prove causality as the diagnostic criteria are too weak and no inflammation is required. (Infections and autoimmunity cause inflammation). And of course, no biopsies in sight.