NJCFSA Conference with Dr. Mikovits Oct 17th

[5150]

[QUOTE=Jemal;Ha! Well I would rather have the mice then all the images of people sleeping! I am afraid it's suggesting we are lazy or something...





It's horrible! I am fed up with these images. It's like we are all relaxing in our cozy beds. Give me the mice any time any day!
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Re "relaxing in our cozy beds" : When I see the picture as seen in this thread, it literally scares me... take a closer look at the exhaustion portrayed by the look on her face. I can't look too long because it brings up that all-too-well-known feeling of "near to death". And the pillow on the stomach because your gut hurts so badly from dysbiosis. And the left arm draped up higher because your left ventricle isn't working so well, and your heart is inflamed and weak. And the frown line of the mouth brought on by constant worry about your own health and the safety all those unfortunate enough to be in your personal life or in your airspace. No, a mouse can't say all of that.

a mouse= a dirty rodent running around in its droppings leaving nasty diseases behind. Sorry, no mouse for me.

 

[eric_s]

isI don't think Cooperative Diagnostics is the enemy per se. They're a diagnostic lab - they use proprietary techniques they developed that they think are better than anyone else's. They seem to be doing fine in a competitive marketplace. They saw a good thing with XMRV when it came out and they jumped on it. Then they couldn't find it in CFS which surprised them. They dug deeper and they still couldn't find it. Now they don't think it's there and feel strongly enough about it to publish it with their name on it. That's it for me.

I know it seems very personal and gut wrenching but it's too bad it has to get personal in public.

If CD does a lousy study with all the brainpower directed at this virus that will become very clear over time. My guess is that the cause will be something little that no one thought of at first; ie the blood storage scenario - in that scenario alot of people get exonerated and we can stop hammering each other.

Is this study really one year old? Can somebody confirm this, please?

 

[lansbergen]

I am still drawn to the idea that ME or CFS is a reaction to the virus however, and the virus may not be causal.

Flu is a reaction to influenza virus. Influenza virus is the cause of flu.

As long as a virus is not eliminated the reaction can go on.

In my book the virus is the cause of the immunesystem reacting to virions produced by activated provirus.

 

[natasa778]

However, I know there was a thread on this somewhere, I just cant find it. They found they could get results using env, but not pol or gag, and they needed three times the usual amount of nucleic acids, and I think they sometimes had to repeat the test. The excerpt I pointed to above only shows part of this. Even with advanced search I couldn't find it, I am starting to wonder if it is more a memory glitch (but not seriously).

One candidate target for the envelope toxin is the nerves affected by small fiber neuropathy: we should be looking at peripheral nerves, not just the CNS. It is a candidate (i.e. we need proof) cause of CFS. It is a good candidate as a cause for orthostatic intolerance and neurological pain. I am still drawn to the idea that ME or CFS is a reaction to the virus however, and the virus may not be causal.

One of the reasons I like the envelope hypothesis is that the virus can just crank out envelope to attack our nervous/immune system, which reduces the risk of us becoming resistant (no viral RNA to alert us), particularly since it mutates faster. If it does target sensory nerves, this could be like electronic counter measures: scrambling the nervous system's ability to detect problems, and keep the body exhausted finding other things by overloading the sensory systems. Worse, by binding to nerves, it increases the risk of neurological autoimmune attack, which would further degrade our nervous system.

That is more or less exactly what happens with HIV - its envelope proteins are the main culprit in "NeuroAIDS", everything else is secondary or can be completely absent (eg brain lymphocyte infiltration etc).

some links here - scroll down few paragraphs on each:

http://www.autismcalciumchannelopathy.com/Infectious_Agents.html

http://www.autismcalciumchannelopathy.com/HIV_and_Autism.html

also if you have time look these up (they all should be linked via above website):

Calcium dysregulation and neuronal apoptosis by the HIV-1 proteins Tat and gp120. Haughey NJ et al J Acquir Immune Defic Syndr. 2002 Oct 1;31 Suppl 2:S55-61.

MCP-1 and CCR2 contribute to non-lymphocyte-mediated brain disease induced by Fr98 polytropic retrovirus infection in mice: role for astrocytes in retroviral neuropathogenesis. - Peterson KE et al J Virol. 2004 Jun;78(12):6449-58.

HIV-1 Tat activates neuronal ryanodine receptors with rapid induction of the unfolded protein response and mitochondrial hyperpolarization. Norman JP et al, PLoS ONE. 008;3(11):e3731. Epub 2008 Nov 14.

Adsorptive endocytosis of HIV-1gp120 by blood-brain barrier is enhanced by lipopolysaccharide. Banks WA et al Exp Neurol. 1999 Mar;156(1):165-71.

 

[anciendaze]

I don't think Cooperative Diagnostics is the enemy per se. They're a diagnostic lab - they use proprietary techniques they developed that they think are better than anyone else's. They seem to be doing fine in a competitive marketplace. They saw a good thing with XMRV when it came out and they jumped on it. Then they couldn't find it in CFS which surprised them. They dug deeper and they still couldn't find it. Now they don't think it's there and feel strongly enough about it to publish it with their name on it. That's it for me.

I know it seems very personal and gut wrenching but it's too bad it has to get personal in public.

If CD does a lousy study with all the brainpower directed at this virus that will become very clear over time. My guess is that the cause will be something little that no one thought of at first; ie the blood storage scenario - in that scenario alot of people get exonerated and we can stop hammering each other.

One 'little' thing which is not at all little is failure to validate assays with positive control samples from infected people. This would have caught the serological assay which could detect most MLVs, except XMRV, in the UK.

Official positions in several countries are that there is no such retrovirus in the population. This forces them to validate assays with artificial positive controls. CD simply followed the lead of the CDC in using such controls. None of these groups reporting 0/0 results have assays which work on infected blood from anyone, with or without any illness.

Ignoring this possibility repeatedly is a monumental blunder, which gets overlooked by officials because it buys them time. Responsibility has been fragmented until no one is responsible for anything. We are currently watching replays of "Who's on first?"

 

[alex3619]

Hi natasa778

Wow, more info than I can handle! ;-)

I have been a fan of the calcium dysregulation model of CFS since the late 90s. I had a poster on hypercitricemia (which disturbs calcium homeostasis) in 1999. Since about 2002 I have realized this is more a symptom than a cause - and I wondered about reasons. Citric acid decreases intracellular ionized calcium overload. The cAMP/Ca++ axis (a crucial intracellular control mechanism) is influenced by this. The mitochondria is the source of the citrate, so it also implies an induced mitochondrial problem. Many people think that high citrate in CFS is disproved, I still have not seen any study that convinces me. As I see it, and have since 2002, citrate protects the cells. It also lowers some oxidative stress by binding to any free iron.

The second paper below is a murine retrovirus model of HIV, so probably very relevant to us.

The last paper is also very relevant. LPS levels in CFS are directly related to disability levels. It is also at least half due to the gut dysfunction (probably the gut macrophages, but it is too early to be sure). So this is a potential link between XMRV and increased gut permeability.

Bye
Alex

Calcium dysregulation and neuronal apoptosis by the HIV-1 proteins Tat and gp120. Haughey NJ et al J Acquir Immune Defic Syndr. 2002 Oct 1;31 Suppl 2:S55-61.

MCP-1 and CCR2 contribute to non-lymphocyte-mediated brain disease induced by Fr98 polytropic retrovirus infection in mice: role for astrocytes in retroviral neuropathogenesis. - Peterson KE et al J Virol. 2004 Jun;78(12):6449-58.

Adsorptive endocytosis of HIV-1gp120 by blood-brain barrier is enhanced by lipopolysaccharide. Banks WA et al Exp Neurol. 1999 Mar;156(1):165-71.

 

[Bob]

One 'little' thing which is not at all little is failure to validate assays with positive control samples from infected people. This would have caught the serological assay which could detect most MLVs, except XMRV, in the UK.

Official positions in several countries are that there is no such retrovirus in the population. This forces them to validate assays with artificial positive controls. CD simply followed the lead of the CDC in using such controls. None of these groups reporting 0/0 results have assays which work on infected blood from anyone, with or without any illness.

Ignoring this possibility repeatedly is a monumental blunder, which gets overlooked by officials because it buys them time. Responsibility has been fragmented until no one is responsible for anything. We are currently watching replays of "Who's on first?"

Anciendaze, the points you make here are crucial to the negative XMRV research studies, aren't they!
It has been reported that some of the researchers carrying out some of the negative studies couldn't detect XMRV in the positive patient samples received from the WPI, but they neglected to report this minor fact in their published papers!

I don't understand why some scientists insist on ignoring the blindingly obvious and can't use any common sense.
I mean, it doesn't seem like complex rocket science, or even complex virology, to work out that all of your methodology should be tested on legitimate positive patient samples, before a paper is published, or before the public is exposed to your science or services.

I wonder if some scientists have to sign a pledge to abandon all common sense when they take up certain scientific posts?!
Or I wonder if it is it just to do with receiving grants and funding for publishing completed papers, whether they are accurate or not. (I expect the facts can sometimes get in the way of publishing a complete research paper.)
Maybe it's a bit of each.

 

[Otis]

@ancientdaze - Thanks, we need to keep our eye on fundamental study design and not get caught up i- the tail chasing.

@natasa Thanks for the reading material.

@alex, that's more food for thought than my env polluted brain can absorb today.

 

[Bob]

Cancer and Neuroimmune Diseases Induced by the Human Retrovirus XMRV

We are currently using knowledge and reagents obtained from working with mouse retroviruses to study the xenotropic MuLV-related human retrovirus XMRV, which was recently discovered through an association with prostate cancer. In collaboration with the laboratories of Judy Mikovits and Frank Ruscetti, we were able to use antibodies developed against the envelope protein of SFFV to detect infectious XMRV in the blood cells and plasma of patients suffering from the neuroimmune disease chronic fatigue syndrome (CFS). We were further able to develop a seroconversion assay using cells expressing the SFFV envelope protein to detect antibodies against the virus in the plasma of CFS patients. We now plan to apply our knowledge of the pathogenesis of mouse retroviruses that cause cancer and neurological disease in rodents to study the molecular basis for similar diseases associated with XMRV. We are in the process of developing rodent models for determining the biological effects of XMRV in vivo, which if successful will provide a small animal model for preclinical testing of potential anti- XMRV drugs. In addition, we are testing both in vitro and in vivo the biological effects of the envelope protein of XMRV, which like its related SFFV counterpart may be responsible for the pathogenicity of XMRV.

Fascinating stuff... So from this, do you think I would be right in deducing that Sandra Rucetti doesn't think that XMRV is a lab contaminant?!

 

[Otis]

Yup, a safe bet that's the official position of the family.

 

[Judy Frederiksen]

If this isn't a huge health crisis, I don't know what counts as one.

I feel like I am on the Titanic and most of the band is still playing.

*edit*
Oh and yes... thanks a lot for posting this!

Just to clarify...this is infected not active and the number for active is around 1,000,000...

 

[Cort]

One 'little' thing which is not at all little is failure to validate assays with positive control samples from infected people. This would have caught the serological assay which could detect most MLVs, except XMRV, in the UK.

Official positions in several countries are that there is no such retrovirus in the population. This forces them to validate assays with artificial positive controls. CD simply followed the lead of the CDC in using such controls. None of these groups reporting 0/0 results have assays which work on infected blood from anyone, with or without any illness.

Ignoring this possibility repeatedly is a monumental blunder, which gets overlooked by officials because it buys them time. Responsibility has been fragmented until no one is responsible for anything. We are currently watching replays of "Who's on first?"

Cooperative Diagnostics actually did extensive diagnostic studies well before they met up the CDC. They were very excited to be on the forefront of the next big diagnostic test - as you can imagine. I was part of one early study. Yes, they want to validate assays with positive controls but my guess is that they never found any positive controls; ie they never found any XMRV in any of the samples they tested - so they worked off the prostate clone - which may have been a mistake something we will find out over time.

My take is that they wanted to find it - why would they not? - they are a diagnostic lab, after all, that is their bread and butter - but they weren't able to. Finally they really put their money where their mouth was when they put their name on a study. They are very clear about XMRV. Dr. Mikovits and Dr. Ruscetti are as well. I know who I hope wins this argument - but I don't have anything nefarious to say about CD. I think this is just a very tough problem.

 

[Cort]

Is this study really one year old? Can somebody confirm this, please?

The original study was in Oct of last year, believe it or not. I think it was Oct 8th. The big CFSAC meeting was at the end of October. Yes - its been an entire year...the Year of XMRV!

 

[Cort]

Anciendaze, the points you make here are crucial to the negative XMRV research studies, aren't they!
It has been reported that some of the researchers carrying out some of the negative studies couldn't detect XMRV in the positive patient samples received from the WPI, but they neglected to report this minor fact in their published papers!

I don't understand why some scientists insist on ignoring the blindingly obvious and can't use any common sense.
I mean, it doesn't seem like complex rocket science, or even complex virology, to work out that all of your methodology should be tested on legitimate positive patient samples, before a paper is published, or before the public is exposed to your science or services.

I wonder if some scientists have to sign a pledge to abandon all common sense when they take up certain scientific posts?!
Or I wonder if it is it just to do with receiving grants and funding for publishing completed papers, whether they are accurate or not. (I expect the facts can sometimes get in the way of publishing a complete research paper.)
Maybe it's a bit of each.

The CDC received legitimate positive XMRV samples from the WPI - for whatever reason they just didn't find anything. Isn't that how that went? Then they tested their own samples.

 

[Cort]

Hi lansbergen - thanks for this - so if XMRV can't infect mice, is it actually surprising that Dr Coffin couldn't find it in the 70 species he looked at? Why would he even look?

XMRV could have been able to infect mice at some point and got into their genome then and then lost its infective capability - so it could be in them without being 'infectious' any more. I think that's the scenario

 

[garcia]

Yes, they want to validate assays with positive controls but my guess is that they never found any positive controls; ie they never found any XMRV in any of the samples they tested - so they worked off the prostate clone - which may have been a mistake something we will find out over time.

You don't validate your assays with your own test, especially if you can't find the virus and others can! You get positive controls who have been found using other tests. This is Science 101.

My take is that they wanted to find it - why would they not?

Why did CD not even use a reasonable quantity of blood then? Dr Coffin was damning about this test at the first CFSAC meeting. I know because I transcribed it, and you published it! He (and we) knew it was a dodgy test from the outset. Anyone could see that.

 

[Bob]

The CDC received legitimate positive XMRV samples from the WPI - for whatever reason they just didn't find anything. Isn't that how that went? Then they tested their own samples.

I was thinking of the researchers that forgot to mention in their published study that they couldn't detect XMRV in positive patient samples sent from the WPI... I can remember who it was now... Did the CDC admit to testing the WPI's samples in their published paper? All the details become a bit of a blur sometimes!

 

[garcia]

Did the CDC admit to testing the WPI's samples in their published paper?

No they didn't. This "detail" was surreptitiously omitted by the CDC from their published report. We had to find this out from the investigative journalist Mindy Kitei.

Bad science or fraudulent science. You take your pick.

 

[Cort]

You don't validate your assays with your own test, especially if you can't find the virus and others can! You get positive controls who have been found using other tests. This is Science 101.


Why did CD not even use a reasonable quantity of blood then? Dr Coffin was damning about this test at the first CFSAC meeting. I know because I transcribed it, and you published it! He (and we) knew it was a dodgy test from the outset. Anyone could see that.

I don't know about that first test - you may be right - I'm sure you're right about what you remember. They did take quite a bit of blood from me (fruitlessly).

If you read Kurt's take on the present CD study, however, he stated that they actually used more blood than the WPI did in their study - so it appears their study, at least in that regard, was fine.

If you read the Cooperative paper, you will see that their sample volume was larger than WPI's in the original Science study. This test was run with fresh full blood draws, full tubes, and was designed to help validate the WPI finding. Even their earlier finger-prick test used a larger sample volume than some of the other XMRV tests. That is a well proven method for retrovirus detection, now used in HIV testing.

 

[Jemal]

Just to clarify...this is infected not active and the number for active is around 1,000,000...

I understand that most of those 10 - 20 million Americans don't have symptoms.
However, it could take years before symptoms appear. Some people infected with HTLV-1 develop disease after 10 - 20 years.

Of the three known retroviruses infecting humans and causing problems, XMRV would also be the most common:

1. HIV: has infected about 1.000.000 people in the US
2. HLTV-1/2: can't find clear statistics, but prevalence seems to be less than HIV, at least in the US.
3. XMRV: possibly 10.000.000 - 20.000.000 Americans infected!