Post XMRV - For those that think this is dead...

[free at last]

You know i forgot about that place village Life. I might just do that.

 

[free at last]

You have more faith than i feel Rusty

 

[Daffodil]

i'm pretty sure the virus infects bone marrow, maybe a little later after infection, like FeLV

the brain issue has had me trumped for years. cannot make heads or tails of it.

 

[currer]

I do have a wiki that is slowly building up. If anyone has documentation of the B cell-Mikovits tie in, I would appreciate it. Currer? It all helps against those who think shooting goldfish in a bowl is fair sport.[/QUOTE]

I am going to try to write something more detailed later, thanks for prompting me, Rusty.
But this paper is a favourite of mine -
http://www.retrovirology.com/content/8/S1/A230

I think a lot of this information may be in the Mikovits Co-cure talk. - link anyone?

I suddenly realise that many people here do not know things that I have taken for granted that everyone on this forum knows. This may be why so many do not understand the true value of Dr Mikovits research and are either doubting or attacking her. We all have different backgrounds and come to this research with different assumptions.

I have accumulated most of my knowledge slowly, over the long time that I have been ill, as I worked for fifteen years for an ME support group since the early 90s and have followed what reasearch there was since then. integrating each bit as I come across it, so it is hard to locate source. My consultant was an immunologist and I picked up a lot of his ideas about how ME affects the immune system and why we have the specific symptom complex that we do.

This integrates nicely with Dr Mikovits ideas.
You need to look for an agent which is causing the immune system to malfunction.
Auto immune by itself wont do it.

Interestingly my consultant used to point out that the immune system by itself was quite capable of creating most of the unpleasant symptoms we experience, from muscle and joint pain to mental and cognitive malfunction and mood problems.
This is why ME was always called "benign" because there is little apparent organic damage of the sort you could see by examining organs or tissues.
And many people in a remission can resume notrmal function.

All this suggests that there is little organic damage and the disease acts by causing immune dysfunction, which is quite capable by itself of making us feel as ill as we do.
However ongoing immune dysfunction can result in lymphomas, so "benign" is a misnomer.

What really needs to be asked is - Why do we see large numbers of people going down with this new disease now? Can this really be put down to an idiosyncratic reaction on the part of the patient, as in a true auto immune disease?

For example, the Norwegians note that auto immune disorders are more common in their group than in the general population. This is true.

But what you need to ask is why has ME appeared in these last few generations?
And why does it sometimes take epidemic form, as in the Lyndonville outbreak, a well documented cohort of true ME cases?

You do not get epidemics of auto immune disorders.

Dr Mikovits spotted the fact that murine leukemia viruses maintain their infection of their host by infiltrating the immune system, causing it to malfunction, and preventing their host from eradicating the infection.

This gives us an agent which could act to produce the pathology that we see, one which largely affects the immune system itself.

Now Dr Mikovits hypothesis is still unproven. The cause of ME and its effect on the body is not known, because of the dearth of proper medical research.
But it is an hypothesis which accounts for most of the known facts and she deserves credit and respect for this.

I would also like to see her given the opportunity to prove her hypothesis by being allowesd to PUBLISH her research. We know that she has this difficulty.
The Norwegian work can only help her as it will massively increase research interest in this disorder.

I would be happy to see the unfair and unjustified attacks on her integrity cease, especially on this site.

 

[free at last]

Hi Currer the theory of what you say, is exactly why it still seems like a virus to me. why the glove fitted so well to begin with. We do really need hard evidence though. Evidence that can be repeated by other scientists. Without that. The theory will remain in the desert. Or worse still abandoned completely. which is what we keep getting calls for. Lets hope a few are silently working away in the background. But as of now, the evidence that is displayed really will need to be both convincing. and reproducible by all.

 

[RustyJ]

I do have a wiki that is slowly building up. If anyone has documentation of the B cell-Mikovits tie in, I would appreciate it. Currer? It all helps against those who think shooting goldfish in a bowl is fair sport.

I am going to try to write something more detailed later, thanks for prompting me, Rusty.
But this paper is a favourite of mine -
http://www.retrovirology.com/content/8/S1/A230

I think a lot of this information may be in the Mikovits Co-cure talk. - link anyone?

[/QUOTE]

Thanks currer. This is good. I actually remember this paper now. I will add it to my wiki. If anyone has more please provide links.

 

[Bob]

...this paper is a favourite of mine -
http://www.retrovirology.com/content/8/S1/A230

I'd forgotten that that abstract had been published...
It does seem like a very compelling piece of research, doesn't it!

 

[Guido den Broeder]

Except that it was only in a few percent of all patients that something happened.

However, B cells are (also?) a known hideout for EBV.

 

[Bob]

Except that it was only in a few percent of all patients that something happened.

It doesn't say if they attempted to create cell lines from patients without lymphoproliferative disorders. I assume that they might have attempted to, and were not successful, but that's only an assumption.

But anyway, purely in terms of human XMRV infection, the abstract is very interesting, and it only needs one infected patient to demonstrate that XMRV is a human virus.

 

[Guido den Broeder]

True, but what we do not know yet is what harm it can do.
We know that latent EBV causes oxidative stress.

 

[Nielk]

Did you see this article in Bloomberg

http://www.bloomberg.com/news/print...tied-to-fatigue-not-transmitted-by-blood.html

 

[alex3619]

AND - has anybody elsed noticed how claims of scientific authority that we've been seeing are all based on rhetorical use of LANGUAGE, a social structure?

This is important- because the language is not accurately denoting the science in this latest debacle - it is being used for ideological purposes. Ignorance of this among people claiming scientific authority has led to heinous mis-use of language without contest. It shows how bad things have got, for example, when a female scientist is subject to highly sexist language about her eyes in a so-called scientific journal, and male scientists get to compare her to a female religious fanatic, and no-one except some of us bat an eyelid.

Are 'Scientists' becoming THAT ignorant, THAT dumbed down? It looks that way.

Hi Angela, your comment cites and questions issues that demonstrate why I have said in several places now that we have been remarkably good about discussing the science; where it gets vitriolic is where the scientists or spokespeople step out of their traditional roles and engage in politics. Language like you describe is political, not scientific, and we rightly in my view take offence over a serious scientific process on which our futures depend being railroaded by cheap theatric politics. If scientists don't want to be criticised, they should keep their statements, particularly in front of the media, strictly scientific. Cheap politics will never go over well in a community of people who have been at the receiving end of either social abuse or neglect for decades. I do not recall having any problem with any biomedical science paper I have read recently (I deliberately exclude biopsychosocial studies here, some of which offend me) but I cannot say the same about the media quotes being ascribed to scientists and never challenged nor retracted. I can only presume that they are indeed said by the scientists who say them, which makes them people playing politics, not scientists.

Bye
Alex

 

[currer]

Except that it was only in a few percent of all patients that something happened.

However, B cells are (also?) a known hideout for EBV.

Yep Guido,

EBV can cause lymphoma.

But the abstract says that the xmrv produced by these B cells had been extensively mutated by APOBEC. This must show that the XMRV is a real infection in these B cells.

In her Invest in ME talk, Dr Mikovits states that they ran a 2D electrophoresis test on the antibodies found in their samples.
This revealed an HGRV antigen, so the antibody reaction in the patient could not be a non-specific cross reaction.

 

[redo]

Posted in wrong thread. Appreciate a moderator deleting this.