XMRV and Culturing, HERV's and more

[_Kim_]

Hi Noddybuddy,

Here's the link to the site Jackie mentioned:

http://evmedresearch.com/index.php

Thanks for posting that jackie (& Dr. Yes).

I hadn't seen that website either. Though it's only available for research purposes now, it's exciting to see that they do offer an ENTEROVIRUS VIRAL RNA test that can determine the presence of enteroviral RNA within the blood of patients. If this becomes available commercially, would it mean that we could be diagnosed without an intestinal biopsy?

ETA: I think I answered my own question by reading the case studies published on their website. It appears that, at least in the research setting, they are using both the Viral RNA test as well as stomach biopsies to confirm enteroviral infection.

p.s. Jackie: did you start that thread on enteroviruses? This stuff should be moved there.

 

[kurt]

you dont base a hypothesis on rumours kurt but observable facts a specific anti body response to xmrv env was OBSERVED The significance of that may not be apparent to a layman but would be immediately apparent to anyone with qualifications in this area

Did that observed response rule out the possibility it was a cross-reactive species that was found? We know that MuLV type antibodies are cross-reactive.

I've also noticed that people are happy to hear positive sounding rumours, but not the negative ones. We should be really careful not to let ourselves filter information in this way, as it could end up creating a misleading impression of how likely XMRV is to work out.

Intellectually, I think I'm quite sceptical about it, but emotionally I can feel that I'm still pretty attached to XMRV working out. Voices like Kurt's have been vital for keeping my feet on the ground. I want to be prepared for bad news if it comes (especially because I'm less positive about the other avenues of CFS research being explored) as well as the possiblity of good.

Esther raises a good point. I have yet to see anyone challenge or attack a positive rumor about XMRV. This is a double standard. But now that challenges me also to not have a double standard.

So for the record, yes, I have reported sometimes hearing back channel rumors, due to some of my research contacts. Most of the rumors are of negative XMRV findings. But there are a few positive rumors also, just not as many. WPI has hinted in several different ways that somebody out there is getting positives for XMRV. I will try to remember that also in any future statement about 'rumors'. So to clarify, there are rumors both of labs finding XMRV and of labs not finding XMRV.

My view is that even when all these studies are reported, neither positive nor negative outcome is completely proven until a sufficient body of studies is available and all reasonable angles have been explored. For example, a positive XMRV study might have false positives or cross-reactive findings, and a negative XMRV study might have testing or cohort problems. To be balanced we should consider both sides, the risks for both types of outcomes.

I expect we will see enough publications by summer to validate both types of rumors, and researchers on both sides will take sides in the debate. And probably we should leave the more detailed scientific debates to them.

XMRV energized this community - patients, activists, physicians, researchers, media... we are on the radar in a way we have not been since Tahoe. It's not all good noise, for sure, but much of it is. We have so much more awareness and, should XMRV fail to live up to its promise (I don't think it will fail, myself), we have the Light studies, and others, which are very interesting.

So, I am feeling very positive about XMRV being the key to what's ailed me for three decades but I won't be shattered if it's not. I know that, unlike the situation with Elaine DeFreitas, there are people working on our behalf now who will not, and cannot, be shut down.

I'm also acutely aware of the subtle changes in language being adopted by all the psychologizers - they are being very, very careful to inch closer to the tree on that limb they've been out on for so long. Why is that?

Everything has changed. Dig in your heels, folks, and just don't let anyone change it back!

I totally agree. Even if the XMRV studies do not lead quickly to a cure, if all they accomplish is to raise awareness of the existing organic evidence for CFS and therefore silence the CFS psychologizers that would be a big help.

OK, taking a break now for awhile...

 

[dannybex]

Laymen's terms...YES!

i,m sorry you cant find the evidence but it is clearly in the paper there is no shift nothing changed

Dr M might have assumed that other virologists would actually read the paper and felt it unnessary to state the absolutely obvious. ALL latent phase viruses are incredibly hard to detect especially iof you dont look in the right place

... i will post the details shortly and i will contextualise the other studies at the same time so that lay people can see the very plain differences

Thanks Gerwyn -- I'd would sincerely a summary in laymen's terms -- I think that would be very helpful for all of us.

Also, awhile back you mentioned that although XMRV was found in healthy controls (approx 10 million in the US), the titres were higher in the CFS/ME population. If you could post a link to that part of the study, that would be great.

Thanks in advance! :Retro smile:

 

[jackie]

Who do I kiss first??? The Doctor or Kim!!! (Oh, wait...do I GET to "kiss"?)

I've wanted to have that info available since his site began...too embarrassed to come right out and ask for help in linking it! Just tip-toed around - hinting here and there!

Please, take the time if you can, to read the whole site as there is valuable data there. (dr. Chia was also "around" at the time of the Incline Village Epidemic and mentions the cdc's reaction)

(Yep, Kim...that's what it will mean!)

Thanks....jackie

(Note: especially interesting are the FAQ'S)

 

[Gerwyn]

Thank-you to those who have answered my request for input on whether you want to hear more about HERVs, alternative hypothesis for XMRV, etc. What I gather from the responses is that it is split, some are interested and some do not think it is helpful. Kim mentioned the CFS population is strong enough to deal with the eventual outcomes if XMRV fails, although others disagreed. I sense in the conflict over just talking about possible problems with the XMRV studies, that the CFS population is not uniformly resilient. And also several have requested to separate speculation from fact more clearly. That is a good idea I think for everyone.

I need to take a rest from all this for awhile, so will probably not post as much the next few days. However, I want to reply to Gerwyn's repeated statements that there is no in vitro evidence for the points I made. There is good evidence, but I have not always provided quotes, expecting people would google search the issues I raise, but probably many are too tired for that. So I will try to look up these items and give quotes or references more often. Actually, I did give 'in vitro' evidence for the emeMS rging hypthesis that HERVs are involved in disease, including work by Huber for HERV K18 in CFS, and a new study in MS showing differential HERV W expression between tissue samples and controls. And there is plenty of 'in vitro' evidence of HERV cross-reactivity, including with MuLV, in the 'Rumor Viruses' article I included. That is a long .pdf article and probably I need to hunt down some specific quotes. Someone else is welcome also to work through that article and find the evidence, it is there, over 500 study references!

Gerwyn, you stated that you are a qualified microbiologist. Would you please clarify what that means? I have some idea in the US, but maybe that should be more clear to everyone here given the level of analysis you provide. For example, here in the US that could mean several things, from a technician with a bachelor's degree running culture machines and operating a microscope in a hospital lab, to a PhD researcher in a laboratory conducting original studies. And probably several steps in between. And a second question, do you have formal training in virology beyond the introductory level? (some may not realize that virology is not necessarily part of microbiology, at least in the US, a distinct specialty) Thanks.

Precisely the evidence is" in vitro" --believe it or not ME sufferers are actually alive so in vitro evidence is irrelevant. A lot of sufferes feel as though they are in a glass bowl of course. We dont do introductory level in the Uk.I have already answered your questions re by background once.Is your brainfog troubling you again?
it is a shame that the meaning is so nebulous in the US you could have all sorts of people masquerading as someone they are not.I am sorry that the training in the US is so fragmented but it is fully integrated in the UK.

 

[jackie]

Kim....I don't want to keep hi-jacking this thread...but DID I start one on Enteroviruses? (I don't THINK i did?!...I think somebody told me to?). I was just giving Niddynoddy a long-winded answer to her question of me. I'll be glad to move whatever I need to - just tell me what. (I'll butt out now!lol!)
jackie

 

[Marco]

It is a shame that i am also a qualified microbiologist as well then is it not---i dont think anyone else on this forum is . If you genuinely cant understand the concept of cell cell transfer I am sorry .I could not think of a simpler way of putting it. It means moving between a cell and another cell without need to go into the blood. I hope the soup is a little clearer now

I have never stated that I have educated myself in Virology You must be confusing me with someone else

You must pretty full of salt i would imagine!

I am a little confused .Are you saying that you take Kurts comments as emmanating from a relevant professional? I think that he mentioned he was self taught in Biology

You are quite right to be wary of random nutters on forums though it happens a lot

Gerwyn

I DID clearly state that my comments were not personal to you but were merely to illustrate the point that we should not be operating double standards over what people should be required to substantiate when engaging in what is usually a speculative debate.

I may be thick (well actually not - having a first class honours degree and MSc with Distinction etc) but the statement of yours I quoted is meaningless to me in isolation. Perhaps you are tired but you continue to speak in non sequiturs. If you would like the discussion to extend beyond those who profess a knowledge of virology (i.e. to address the the vast majority of this forum) then you owe it to the rest of us to give a little context and explanation to your statements.

I certainly didn't suggest that Kurt has any particular or superior knowledge - he has been open about his qualifications and lack of qualifications on the subject. The point I was making was that we are all 'amateurs' here and are largely speculating anyway. Perhaps you could clarify what you mean by a qualified microbiologist and how this relates to the speciality of virology? Actually I thought you were a qualified lawyer as well as psychologist?

Actually that doesn't matter. You are as entitled to your opinion as anyone else on this forum.

Cheers

 

[kurt]

Precisely the evidence is" in vitro" --believe it or not ME sufferers are actually alive so in vitro evidence is irrelevant. A lot of sufferes feel as though they are in a glass bowl of course. We dont do introductory level in the Uk.I have already answered your questions re by background once.Is your brainfog troubling you again?
it is a shame that the meaning is so nebulous in the US you could have all sorts of people masquerading as someone they are not

Some of Huber's work may be in vivo, I have not read every part of that yet.

I know you have a micro degree, just was wondering what level, BS, MS, Ph.D. Usually in the US when someone is a 'microbiologist' they have a PhD or sometimes MS. BS is more technologist work. But maybe different in the UK.

 

[Knackered]

Some of Huber's work may be in vivo, I have not read every part of that yet.

I know you have a micro degree, just was wondering what level, BS, MS, Ph.D. Usually in the US when someone is a 'microbiologist' they have a PhD or sometimes MS. BS is more technologist work. But maybe different in the UK.

I've got a Bsc...


Bronze Swimming certificate!

 

[Dr. Yes]

My doctor has a PhD in BS

 

[dannybex]

lol...thanks. Laughter is often the best medicine, but sometimes it's easy to feel we're in the placebo group.

 

[Gerwyn]

Did that observed response rule out the possibility it was a cross-reactive species that was found? We know that MuLV type antibodies are cross-reactive.

kurt read the paper observable response rule!!! a new one at least the combination and genotyping confirmed xmrv

sther raises a good point. I have yet to see anyone challenge or attack a positive rumor about XMRV. This is a double standard. But now that challenges me also to not have a double standard.

I dont remember any one quoting a positive rumour about XMRV studies. Negative rumours however have been involved in the construction of many posts.



Are you referring to the BLAST performed with the newly discovered XMRV antigen? I thought that was specific to the PCR test, not the antibody testing. I have only been discussing MuLV antibody problems.
no i am not as was clearly stated in my post
I have not found a good theory or alternative explanation for the WPI PCR test finding other than the usual problems of contamination or false positive due to test design. So I fully agree there is no case to be made for HERV involvement in the PCR if the BLAST worked and was not contaminated. But the antibody test is a different matter where HERV involvement can be a real risk.

no not in the conditions of the WPI study have a look at the structure of the Mulv class hervs

 

[MEKoan]

"Electric communication will never be a substitute for the face of someone who with their soul encourages another person to be brave and true."
Charles Dickens

This is a tough medium and a tricky subject. I hope we can see when the other is being brave and true.

peace out,
the hippie

 

[kurt]

I dont remember any one quoting a positive rumour about XMRV studies. Negative rumours however have been involved in the construction of many posts.

Several posts have mentioned a rumored 'April Surprise' by WPI that is interpreted as a pending positive study. Maybe you did not see them. Also other comments have been made and reported back channel, or so I have been told. Those are rumors I was referring to.

 

[Gerwyn]

Several posts have mentioned a rumored 'April Surprise' by WPI that is interpreted as a pending positive study. Maybe you did not see them. Also other comments have been made and reported back channel, or so I have been told. Those are rumors I was referring to.

April suprise could mean anything i think that is one rumour if indeed it can be classed as such the negative rumours are much more overt and numerous

 

[_Kim_]

Kim....I don't want to keep hi-jacking this thread...but DID I start one on Enteroviruses? (I don't THINK i did?!...I think somebody told me to?). I was just giving Niddynoddy a long-winded answer to her question of me. I'll be glad to move whatever I need to - just tell me what. (I'll butt out now!lol!)
jackie

I am working hard on winning those kisses. I made a new thread Enteroviruses and ME/CFS just for you jackie. I hope you like it!

 

[Gerwyn]

Some of Huber's work may be in vivo, I have not read every part of that yet.

I know you have a micro degree, just was wondering what level, BS, MS, Ph.D. Usually in the US when someone is a 'microbiologist' they have a PhD or sometimes MS. BS is more technologist work. But maybe different in the UK.

None of hubers work is in vivo kurt.I am suprised that you have not had time to read that bit.you seem to have had plenty of time to read the other bits.

this appears typical of a microbiology major course in the USA

During the first year, students in microbiology take basic college courses in English, chemistry, biology or zoology and mathematics. The curriculum over the next three years includes advanced courses in microbiology and the life sciences. These courses include pathogenic microbiology, virology, immunology, parasitology, microbial genetics, food microbiology, microbial ecology and bacterial physiology. The department also offers courses in epidemiology, animal disease, and food safety to enhance our students' understanding of applied microbiology and infectious disease.

I agree that it appears quite fragmented--no evdence of microbiology and virology being seperate though

No the situation is not the same in the UK

 

[julius]

A couple rumors I have heard are that WPI actually found XMRV in 98% of PWC rather than the PUBLISHED 68%.
Also that it was found in autistic patients....etc.

Any of the volumes of information that has circulated around these forums that was NOT PUBLISHED in a journal is either rumor or back channel.

 

[Gerwyn]

Gerwyn

I DID clearly state that my comments were not personal to you but were merely to illustrate the point that we should not be operating double standards over what people should be required to substantiate when engaging in what is usually a speculative debate.

I may be thick (well actually not - having a first class honours degree and MSc with Distinction etc) but the statement of yours I quoted is meaningless to me in isolation. Perhaps you are tired but you continue to speak in non sequiturs. If you would like the discussion to extend beyond those who profess a knowledge of virology (i.e. to address the the vast majority of this forum) then you owe it to the rest of us to give a little context and explanation to your statements.



I certainly didn't suggest that Kurt has any particular or superior knowledge - he has been open about his qualifications and lack of qualifications on the subject. The point I was making was that we are all 'amateurs' here and are largely speculating anyway. Perhaps you could clarify what you mean by a qualified microbiologist and how this relates to the speciality of virology? Actually I thought you were a qualified lawyer as well as psychologist?

Actually that doesn't matter. You are as entitled to your opinion as anyone else on this forum.

Cheers

marco that is not what you said is it?

This is what you said
The dialogue here has largely been between Kurt and Gerwyn. To be perfectly honest most of Gerwyn's contributions are like alphabet soup to me. I don't have the background and, while I might understand the science in time, frankly I don't have the inclination as I don't feel qualified to offer an opinion. Kurt has described his background and its limitations. As far as I'm aware, Gerwyn has self described himself in correspondence as a psychologist and has stated on this thread that he has educated himself on virology. I have to ask if this makes Gerwyn any more qualified to speak on the subject than anyone else, in fact he could be a complete nutter. As could we all.

I continue to speak in what ? i tend to use english.

Please find an example of my speculation

What context would you like

 

[julius]

Regarding all the posts calling for Kurt to back up every statement he makes with a quote or a link. I would like to point out that this is would be a double standard if we didn't ask everyone to do the same. I have copied a couple quotes from gerwyn in this thread which were not backed up by any quote or link.

I am not asking gerwyn to go through this and actually backup all these statements. THAT WOULD BE ABSURD! So why should anyone expect Kurt to have to do it??

BTW; I am not suggesting any of these statements are incorrect. Most of them are probably perfectly fine. They are just not backed up.

The following are quoted from posts by gerwyn on this thread;

Hervs are neither replicative or infective, would not enter cells during the transfective process or be then available for harvesting


Hervs are hervs they cannot infect other cells >they can be made to bud in artificial conditions but never do in real life


The Genetic sequencing of MUlv and XMRV reveal huge differences in deletion downstream of the alternative start codon


recominations can sometimes take place this is one of the mechanisms involved in zoonosis but
this kind of recomination would require neuclotide changes never before witnessed.


Now if something was to insert within Herv DNA at different sites then there would be mayhem.


Hervs are responsible for a great many of our epigenetic responses as they act to regulate the expression of genes



most common cause of multiple herve activation is a retrovirus as they are part of the intrinsic defence sysytem


what would cause the reactivation there are too many systems involved to be a herve causing it


The culturing process is carried out for different reasons in the two instances


The virus was only detected by the PCR method used because the pmbc cells were concentrated and
activated to induce replication


culture is a simpler cheaper way of amplification which can be done in all commercial labs



no activation no cigar


The WPI method itself would not find XMRV in patients diagnosed according to the Oxford criterea
because it is not thought to be associated with people with purely psychological problems



If any trial does not include these steps then the chances of finding the bug will be minimal



The concentration of virus needs to be increased and coaxed into replication



both amplification(of sample) and activation(ofpmbc) are needed.


Yes I mean that the act of activation amplyfied the number of PMBC and thus viral nucleic acid
load and ensured that the viruses became replicative producing the cDNA needed if PCR was to
work


She knows that Mulv lives in lymphoid cells


As a virologist surely she would know that Mulv does not replicate when in the bloodstream.It only replicates in lymphoid tissue,after replication it quickly becomes latent..


The point to realise is that she knew about Mulv and the fact that it was closely related to XMRV.


Ok what does medical screening mean ---In this context patient history and physical
examination by a competent physician .Detectable by blood tests OR patient self reporting
This is what taking a patients history means.


Amplifying positive laced controls is childs play It does not mean the test worked


scientist would calibrate the test first against a known positive. It has nothing to do with
tinking it is effective enough not for a scientist anyway

No one but a complete idiot would try to figure out if a test worked


you cant detect a latent virus using PCR no matter how sensitive


You would have to extract the RNA from the pMBCs and make copy DNA


Amplification is paramount


the Mcclure cohort had no dectectable medical abnormalities


you cant make up for it with a more sensitive technique


pcr only works if virus is replicating


Everyone in the field of retrovirology including Groom and McClure accepts that the WPI isolated XMRV


if you want to validate a test you cant use a different test


The complere sequence was characterised and compared to the viral neuclotide sequence initially
characterised by the discoverer of xmrv



anti body response to xmrv env was OBSERVED The significance of that may not be
apparent to a layman but would be immediately apparent to anyone with qualifications in this area


The virus has also been found in very high titres in saliva and semen.


Gamma retroviruses are all inactive in the blood


no it was xmrv the genotyping clearly proves it.



ALL latent phase viruses are incredibly hard to detect especially iof you dont look in the right place

So come on! Can't we all just get along?