Innate Immune Changes in the Peripheral Blood

[Research 1st]

If ME CFS had been split into subsets (using abnormal signs or tests) we wouldn't be in such a horrible situation where both ME CFS patients, physicians and scientists inevitably disagree with each other, not partially, but entirely. Ill feeling thus ensues, and with good reason. Each side blames each other for holding each other's theories back. We all do this, it's called personal opinion.

For a subset of patients who likely far exceed CDC/Fukuda 'fatigue' based criteria, Dr Mikovits and Co have potentially found 'something'. A finding not explained by Dr Silverman's contamination of his own lab which was falsely attributed to the only explanation of gamma retroviruses or gamma retrovirus 'like' sequences found in ME CFS patients both in the USA and UK (unpublished).

If science is to be allowed to take place, we need to know what that 'something' is.


I would defend Dr Mikovits, because she unwittingly stumbled into 'CFS' not aware of how corrupt the politics is when dealing with a disease that can be as crippling as a COPD and Heart Failure, never mind people tube fed trapped in their beds.

Government policy and psychiatrists believe there will never be a single cause of CFS and ME doesn't exist away from CFS. This is only possible to state and maintain, by refusal to extend the science into new avenues of investigation.

Having no single cause has a double meaning because although this is correct (CFS is heterogeneous), it's also a statement for there will never be any cause of anyone's CFS, away from CFS that is thought to be Ramsay's ME. This is a terrible ongoing tragedy for all involved, not just the patients.

Due to the adoption of the biopsychosocial school's ideas of 'activity avoidance' due to 'abnormal illness beliefs', ME has been obliterated by a group of powerful psychiatrists entrenched in the belief they are correct, without performing any science to assess if this is the case! This is plain wrong, some would say illegal. (Patients may suffer and die as a consequence of being disbelieved).

We can see that since 2009 and the WPI coming onto the scene the retracting, the CDC has done precisely nothing to advance the research of CFS. In fact, the situation is much worse, as a group of non experts are as we speak, redefining CFS, as ME/CFS, including 'advice' of the British psychiatrists, who have also done precisely nothing, to help people with neurological ME either. The IOM contract can only end in failure.

To climb out of oblivion we need new ideas. Autoimmunity and chronic infection leading to a state of ME CFS.

If science was fair, Dr Mikovits's new ideas would be allowed to be funded and explored, rather than shunned, or dismissed as 'old news'. What Dr Mikovits is proposing now, is not old news, it's a continuation of the original hypothesis that was halted mid question and never answered fully. This being:

What exactly are a subset of CFS patients reacting to immunologically, and why do they react?

This question shouldn't be controversial, but for some insidious reason, it remains so.

Due to the WPI's rash decisions, Dr Mikovits' scientific data was taken off her and is now in the hands of others. Scientific data that can now be pre-emptively foretold as 'nothing much' if and when need be. The WPI and the Government gain from this. NB: It is my understanding that a US Govt grant was awarded to the WPI, after Dr Mikovits wasn't gotten rid off out of the influential research sphere. (This would be odd, considering what Harvey Whittemore was being investigated for). A pressing question is since the divorce of Dr Mikovits and the WPI, the WPI have remained tight lipped on the 'treatment' they announced for XMRV+ patients but didn't say what this was, and still won't. Was it antiretrovirals? (ARV's)?

If CFS patients don't have a retrovirus (MRV or pathogenic HERV), then why would ARV's work? I read what is happening in MS with ARV's in an autoimmune disease using ARV's.
http://www.medpagetoday.com/Neurology/MultipleSclerosis/44861

Recent research has also found cytokine profiles in MS and CFS are similar.
http://www.sciencedirect.com/science/article/pii/S1043466614004165

And that MS and CFS patients have the same marker for neuronal damage.
http://omicsonline.org/neurology-neurophysiology-abstract.php?abstract_id=25722

It's not impossible then, there is a novel pathogen 'link' or similar autoimmune action between MS and ME (CFS).

Perhaps all of this won't need to be answered by Dr Mikovits. Perhaps another group of researchers in 2015/2016 will find a novel pathogen unrelated to a retrovirus, in a subset of CFS patients, a pathogen that might become 'supercharged' by HERV's, or something else.

What I hope we are all in agreement with is their should be good quality science, but also, fair science.
Fair never exists in politics and politics controls CFS for reasons you aren't going to find out as long as you have no proof you have a transmissible pathogen that can infect other people.

No one is being permitted to show they don't have CFS. Why is this? Why is it so of utmost importance, that weak Fukuda CFS criteria remains in place, when we have so much good quality research (at the very least) pointing to a chronic inflammatory condition, or possible auto immune origin?

The official line of CFS is nothing like what the biomedical research shows happens in CFS. Politics, but politics that when proven to be so, will be the biggest scandal since AIDS.

 

[Ecoclimber]

I am in the process of researching this and contacting my sources in the research field on these latest postings...sigh. Hopefully, there will be a response unless another researcher in retrovirology steps in to evaluate Mikovits statements as well as the xmlv and xmrv postings.

Deckoff-Jones is not a retrovirology researcher. LANDRES Management Consultant, MAR Consulting Inc is an odd et al posting on a abstract in a chapter of a book that Mikovits and Ruscetti expects the scientific community to take seriously. If it was a peer reviewed research paper published in a top tier scientific journal, then the scientific coummunity might take notice especially if it was closely followed and confirmed by a replication study.

The paper is confusing drawing from numerous ME/CFS research papers conducted over the years. The conclusions and evidence is lacking. Mere speculations, conjectures and assertions don't cut. We've been down this road before.The research is neither robust nor rigorous in making the case for SFFV. Instead of the assertion that xmrv is the caused of every known disease known to mankind, SSFV is now inserted by the authors in that position as a factor for the diseases mentioned by Mikovits from her prior xmrv debacle. Cross-reactivity can be caused by a number of factors.

Cites and post above on xmlv and xmrv integrating into human cells, is limited to xenografts from nude mice and its intended focus is to warn the scientific community conducting lab experiments that cell cultures witin the labs could be contaminated with xmlr/xmrv. Because of this possibility, the authors stated that special caution by lab personnel should be taken and raise the level of a CLIA lab to the approriate level. I assume possible 3 or4.

Xmrv is not in the wild and therefore should not have any impact concerning the ME/CFS community unless you are xenograft nude mouse.

 

[lansbergen]

If science is to be allowed to take place, we need to know what that 'something' is.

What exactly are a subset of CFS patients reacting to immunologically, and why do they react?
.

I agree.

 

[user9876]

Each side blames each other for holding each other's theories back. We all do this, it's called personal opinion.

It shouldn't be about blame. By pulling apart theories it gives a chance for those originating the theory to strengthen the theory or arguments in support of the theory. Hence the need for discussion which I think is necessary in getting to a coherent argument. Keeping things within a small group with similar ideas can lead to group assumptions not being explicit or challenged.

 

[Jonathan Edwards]

It shouldn't be about blame. By pulling apart theories it gives a chance for those originating the theory to strengthen the theory or arguments in support of the theory. Hence the need for discussion which I think is necessary in getting to a coherent argument. Keeping things within a small group with similar ideas can lead to group assumptions not being explicit or challenged.

Thanks user9876. That was what I was thinking. I am travelling without so much net access at the moment and will not say more tonight but I will try to address Dr Mikovits's concerns if I can. It would be nice to communicated directly though, and not to raise any issues about vested interests, because the reality is I have none - which is maybe why I was never very successful in medical politics!!! The sad reality is that much of my life has been a bit like sitting solving crossword puzzles because I was never that good on the social skills side. But I do think I understand people when they feel hurt - people in all sorts of situations.

 

[acer2000]

I applaud this. A ton of interesting work was done and data collected in the 5 years before this group published on XMRV. Its unfortunate that hypothesis didn't work out. This doesn't mean that the the data and observations they collected in the process are invalid. It needs to see the light of day so that other groups can use it to build upon and do more and different research. Isn't that what science is all about?

 

[MeSci]

If CFS patients don't have a retrovirus (MRV or pathogenic HERV), then why would ARV's work? I read what is happening in MS with ARV's in an autoimmune disease using ARV's.
http://www.medpagetoday.com/Neurology/MultipleSclerosis/44861

1. It could be that the ARV is killing a retrovirus.
2. It could be a placebo effect (theoretically)
3. It could be another effect of the drug. Drugs commonly have multiple effects, and some of these may be positive.
4. If there is no control group, the patients may be experiencing spontaneous remission (again theoretically)

 

[Ecoclimber]

Frequent Detection of Infectious Xenotropic Murine Leukemia Virus (XMLV) in Human Cultures Established from Mouse Xenografts - This research from the well-regarded Dr. Adi Gazdar, suggests that the murine leukemia retroviruses may have the potential to become airborne. In their conclusion the Gazdar team warned, “Laboratories working with xenograft-derived human cultures should be aware of the risk of contamination with potentially bio-hazardous human-tropic mouse viruses and their spread to other cultures.” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3218386/

This has already been discussed here:
http://forums.phoenixrising.me/inde...ratory-and-wild-mice.18402/page-3#post-282330

"Remember this paper? http://www.ncbi.nlm.nih.gov/pubmed/21750403
Zhang "Frequent detection of XMLV in human cultures established from mouse xenografts"
They recombine all the time......and the recombinants are adapted to the human cell line they are in."

Yes, I know this paper, but it is old news. In 1977, Suzuki et al. (Gann 68:99, 1977) reported similar findings that human cancers transplanted into mice readily acquired retroviruses (type C viruses). Here's the Abstract:

"Type-C virus particles were revealed by electron microscope in 6 of 9 tumours of cultured and biopsied human cancers heterotransplanted into nude mice. Some tumours in nude mice were explanted for in vitro cultivation. The virus particles were also found in the cultures derived from the virus-positive tumors. They were mostly found extracellularly, but the particles in budding process were also encountered frequently. Cytological study and karyotype analysis of the cultured cells proved these virus-releasing cells are thus of human origin. From the close correlation between the statistical virus counts and the complement fixation titers for murine gs antigen of the tumors and their cultures, these viruses propagated in human cancer cells were confirmed to be infectious viruses of nude mouse origin. The virus replicating in human cancer cells was readily infected in some of innocent human cancer cells by co-cultivation. It is to be emphasized that infection of animal endogenous viruses on heterotransplanted human cancer cells is a bothersome contamination for human cancer research, especially when searching for a human tumor virus candidate."

But, because human cells can be infected by a virus in animals or in cell culture doesn't imply that the virus is a human pathogen. For example, human cells can be infected by feline leukemia virus in cell culture, but as noted elsewhere in this thread, feline leukemia virus is not a human pathogen.

Moreover, there are mice that produce high levels of a xenotropic retrovirus in their blood. The mice are called New Zealand black mice, and they carry an infectious copy of a xoentropic retrovirus in their genomic DNA. No need for recombination here! As I remember, they start of produce this xenotropic retrovirus, called the NZB retrovirus, early in life, but it is not pathogenic in these mice. This virus is not a human pathogen, even though it can easily infect human cells in culture.

But I digress. To my knowledge, there is no good evidence for the presence of XMRV in humans, let alone that it causes disease in humans, and many excellent papers that report it is not present.

Dusty Miller

 

[RustyJ]

Thanks user9876. That was what I was thinking. I am travelling without so much net access at the moment and will not say more tonight but I will try to address Dr Mikovits's concerns if I can. It would be nice to communicated directly though, and not to raise any issues about vested interests, because the reality is I have none - which is maybe why I was never very successful in medical politics!!! The sad reality is that much of my life has been a bit like sitting solving crossword puzzles because I was never that good on the social skills side. But I do think I understand people when they feel hurt - people in all sorts of situations.

I would like to see the matter of 'small sample size' or rather 'absence of sample size' addressed, as this was one of your concerns about the work cited in the paper (yet this appears to be at odds with what Mikovitz? is saying.)

As I read it, those comments may have helped to 'devalue' the paper.

 

[heapsreal]

But, because human cells can be infected by a virus in animals or in cell culture doesn't imply that the virus is a human pathogen. For example, human cells can be infected by feline leukemia virus in cell culture, but as noted elsewhere in this thread, feline leukemia virus is not a human pathogen.

But if they are finding an unusual pathogen and they are also finding immune dysfunction, increased cytokines etc This could be worth looking into. What if xmrv was wrong but it was some other undiscovered pathogen.

Mikovits original work was finding dysfunctional immune responses which looked like some type of infection or was it cancer related?? The immune dysfunctions found cant be from a lab contamination?

Does the immune profile of someone with an autoimmune disease look the same as someone with a chronic infection. From my understanding there is some overlap with cfs/me. MS is another that could very well be a chronic infection rather than an autoimmune illness as there has been a few recent studies of MS improving by treating infections, one was treating ebv, the other i cant fully remember but it was to do with gut infections, as well as ERVs.

Theres lots of questions and not enough research $$ to answer them.

 

[RustyJ]

Thanks user9876. That was what I was thinking. I am travelling without so much net access at the moment and will not say more tonight but I will try to address Dr Mikovits's concerns if I can. It would be nice to communicated directly though, and not to raise any issues about vested interests, because the reality is I have none - which is maybe why I was never very successful in medical politics!!! The sad reality is that much of my life has been a bit like sitting solving crossword puzzles because I was never that good on the social skills side. But I do think I understand people when they feel hurt - people in all sorts of situations.

To be fair, Mikovits probably wishes you had communicated with her directly . Not sure that the 'vested interests' label has been attached to you, rather to elements in the PR community. And it would be naive to believe there are no vested interests involved in this discussion.

However, since you have joined the administration of PR, then in that respect you have vested interests and that is certainly a legitimate matter for debate for some elements of the PR community.

Further, there is a perception because you have expertise in some medical science areas, that all your comments must be regarded on this basis. Few would have the required background to separate your casual comments from those based on your area of expertise.

 

[Kati]

To be fair, Mikovitz probably wishes you had communicated with her directly . Not sure that the 'vested interests' label has been attached to you, rather to elements in the PR community. And it would be naive to believe there are no vested interested involved in this discussion.

However, since you have joined the administration of PR, then in that respect you have vested interests. Whether they apply in this discussion from that perspective is certainly an issue worth debate with some elements of the PR community.

Why don't we talk about vsted interests? What are they? Let's be honest and see.

We are for the most part patients or caregiver and just a few health care professionals with a desire to help

 

[Undisclosed]

I think if Judy Mikovits has something to say like:

It saddens me that Phoenix Rising and the scientific community continue to harm the patient community not because of bad science but because of conflicts of interest and bias that prevents an open and honest look at all of the data

She should come here and say this herself. That is a fairly nasty comment about the members of Phoenix Rising. When one has their science questioned, it's not great to mount a personal attack that attacks the patient community. How about countering with an answer based in research and science.

 

[RustyJ]

Why don't we talk about vsted interests? What are they? Let's be honest and see.

We are for the most part patients or caregiver and just a few health care professionals with a desire to help

I have amended the post a little, which I hope hasn't confused. As far as I know the term 'vested interests' is used to describe an association and the various dimensions of that association. I have no wish to debate what those dimensions could possibly be. That is off topic. I made the comment simply to point out that aligning oneself to a particular group, no matter how regarded (negatively or positively) automatically shifts how that person is viewed by non-aligned groups.

 

[RustyJ]

I think if Judy Mikovits has something to say like:



She should come here and say this herself. That is a fairly nasty comment about the members of Phoenix Rising. When one has their science questioned, it's not great to mount a personal attack that attacks the patient community. How about countering with an answer based in research and science.

Yet it is okay for the PR community to attack her? I have read many personal attacks on Mikovits on this forum prior to this thread, and I think her comments must be viewed in this light.

 

[Kati]

Yet it is okay for the PR community to attack her? I have read many personal attacks on Mikovitz on this forum prior to this thread, and I think her comments must be viewed in this light.

Look, the patient community at large is divided. There is infighting. We cannot agree on different topics such as disease name, case definition, and how to respond to governments regarding how we are left behind.

Moreover, different groups are being attacked, including WPI, CAA, Pandora, to name a few. Perhaps some groups from the UK as well but I am not following that too closely really.

Individuals have been attacked as well, patients and scientists included.

There are at least 3or 4 forums for patients and they are attacking each other, groups and scientists.

This isn't a supportive environment for our patients, patient organizations and scientists to thrive in. Instead of complaining, why not offer solutions, or simply be the solution?

The world is wide and there is ample room for everyone to live in. We are fighting a beast. Being united in that would make us stronger.

My 2 cents.

 

[Ecoclimber]

I would like to know any and all competing financial interests in relationship to the work described by the authors of this study.

 

[RustyJ]

Look, the patient community at large is divided. There is infighting. We cannot agree on different topics such as disease name, case definition, and how to respond to governments regarding how we are left behind.

Moreover, different groups are being attacked, including WPI, CAA, Pandora, to name a few. Perhaps some groups from the UK as well but I am not following that too closely really.

Individuals have been attacked as well, patients and scientists included.

There are at least 3or 4 forums for patients and they are attacking each other, groups and scientists.

This isn't a supportive environment for our patients, patient organizations and scientists to thrive in. Instead of complaining, why not offer solutions, or simply be the solution?

The world is wide and there is ample room for everyone to live in. We are fighting a beast. Being united in that would make us stronger.

My 2 cents.

Part of the solution is to recognize what the problems are, not paper over them. I am skeptical of entreaties to unite, particularly when it is uncertain whose banner we are to unite behind.

Some of the 'misabused' organizations referred to are implicit in P2P and OMI outcomes, yet there is the perception we get behind them simply because we would appear to be united.

It is one thing to lament the lack of unity, and another to quash legitimate concerns. Until we settle the grievances we won't get unity.

If we ignore the grievances, then we leave ourselves open to accusations of ignorance or subterfuge.

 

[Bob]

That is a fairly nasty comment about the members of Phoenix Rising. When one has their science questioned, it's not great to mount a personal attack that attacks the patient community. How about countering with an answer based in research and science.

I suspect that Judy Mikovits has not read this thread, and is not personally acquainted with PR, but has simply responded to what she has been told about PR, not realising that it's an open patient forum. Perhaps she is a trusting person and took what she was told at face value.

 

[Ecoclimber]

I suspect that Judy Mikovits has not read this thread, and is not personally acquainted with PR, but has simply responded to what she has been told about PR, not realising that it's an open patient forum. Perhaps she is a trusting person and took what she was told at face value.

Mikovits is well acquinted with the PR forum and many of her supporters on here.