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From the 1st annual XMRV conference

George

waitin' fer rabbits
Messages
853
Location
South Texas
I need to clean this up but it was kinda stream of con, con, well, brain cells

They all want to leave? (grins)

gilliad science - xmrv are their 4 and what do we call them

are we dealing with 1 or more pathogenic agents- stoye

coffin - xmrv is a replicating virus the other sequence are still unknown not complete sequences insertion sequence that could render other sequence inert.

ruscetti- want's to check transmissible of poly's, recombinate???

judy- we have 500 isolate to check then sequence the entire mess.

gallen marshal Univ miss. - methodogy being vehimetly discussed. when can we get a unified method of detection? is that on the horizon

judy - nice assay from rachale and we are going to do this in the blood working group we are closer

jerry holmberg- the blood working group through this group we will come up with a standard test. and sample prep for a more stardart

coffin - it's only been a year, 6 months to just get it all together the blood working group. diffrent assays for xmrv like HIV- zone of chaos. no agreement on anything. but we'll get there soon

john mellers Uni pittsburg - CFS struck by highly divergent from 0 to 80 percent, could be diffrent patients or diffrent metholgy. just get a group of patients and test via diffrent labs. everybody test the same samples for all the diffrent methodologies. to resolve from 0 to 80 it's got to be the same samples.

jerry h - goal of the bwg, the panel should be able to get a set of patients, we've been using only judy's patients. we need a geo distribution. lack of standard. we want to get a panel established.

judy - heard from cheny, kamoroff, bell, and ???? thiese are good set of patients from all over the world we can begin to address the patients because the doctors have the positive patients.

in singh - xmrv ready for prime time, want to echo importance that we need to cross validate these assays, HPV research progress was achieved when a standard test. cant establish causality untill a stardard test. must have a coordinatied effor amoung the labs must be to move forward. collaborate, collaborate, collaborate.

stoy - the immuniolgist complaining about the virologiist, it will happen quickly.

???? - distract me from kosacs talk an iron curtain through europe that mice virus the derus assay may not have the sequenc biasis

stoy - you have to deveolope an antibody or PCR in order to screen large numbers then we can get on to other things

???? - fukda criteria?? are doctors the doctors

judy - critera is variable in doctors. we use tests to define the patient population

clinical chohorts need

judy - need bio markers

job clinicinal - groups find find 2/3 or 0 it is very important, collection and storage before running

judy - true we have learned in the last two weeks that processing may be the key we may be albe to find viral rna in plam

minda cfscental - when are we going start treatment

john - premature until the pathophisology of the illness, HIV is blocked costant replication of virus. I surprised about hiv behaves diffrent, it's only because of the no antiviral works without constant replication, PC not the case of replication, once the cancer arises is not in the case of CFS but it might have ongoing on replication, arguments that going into the trialscould work, judy says yesssss
but we don't know what's going on, till we have

mindy -how long will that take???

coffoin- counter productive to do ARV right now.

Hilliary - Judy your opion

judy cant' answer that

dodd from red cross - I've heard a lot of incompatable information, high level hypothosis, we're not doing this or that or that but I would like fro the plausalbe mech from the virologisty what's we are speculate
stoy technical details first then we can give you a hypothosis, the more interesting ideals, don??

don - I would say from carconagens not everyone gets cancer, genetics of the host may play a role as well with CFS but we don't know enought to handle questions.

frank???? - funding is there any plans to get the NCI funding

???interest in the NIH and NCI and FC was here and listening and looking at funding options and how do we go about stimulating the funding in the area. R1 aplication are small. and we need good ideals for the funding to be granted, as thing s devolope then we can suspect the NCI and NIH will be able to provide funding.

frank - man from pitts burge, need multi disipinariany grants

???PO 1 project and focused and some of the project and get the information through. encourage them to appy

coffin - turned away from the confrence, and this money funds diverted from preivious projects into this area. that we can do this with discretionay fund but we need long term moneys and sustain the momentum zone of chaos but all fields go through the sausage making but it's going pretty good

????angleo ptholgisy from joh hopkins - negative studys are scaring people off from negative studies, that it wouldn't be that hard to find there was 17 confermitory paper but everybody got to find it and why do we have so many negative studies, the studys were good why the problems

judy - pcr, and that's not how we find retroviruss not virus, and the problems with finding in the cells and hiv and htlv used a varity of methods and to may are using

myra mclure - seology but it's just not thei

judy - 50 posistive from london

myra - indepently sent

judy - validated

myra - well, fine now but I don't want to see independen

judy wow o.k.

reasonable from cdc and fda and validated test we don't know what the diffrences but I recomment that negative pcr for detection of this virus in clinical samlpe

myra -

steve climin aabb - general accepting results, in PC and CFS mutations in rna's but now it's not true what is the prediletion? to tie together my question is can you figure why diffrents, immunosuppression or passager virus

judy - RO 1 studieys about theinate immune responsce?

stoy - there is a defect or immunse suppresion but we don't know

coffin - makes visiable a virus could the disease make the virus

???? shif gears, seperate cfs and pc the epidemiolgy may be diffrent and look at the thearpys in the public domain is friegtening leads to the imagination of scary, what's happening a comppletly micro epidimic because of treatments/??? that doest have a nothing to do with cfs and PC or the pathogeniss

styo is anyone say the epdim is the same??

??? that the two is incompatiable with the same pathogents

david GSC - mulitpul virus sample of cfs or pcr or serology is evey

judy to llok at all the virus, cfs have a lot of active virus, lyme, micro plasim, the rv creates aides to not be able to controll as in the HIV early days 25 aids defining illnesses. and are look at all of those the

david - but is xmrv just a pass

judy - in geernaly rv don't just hang out but we expect to see that it will cause problems

???? negative studys we still don't know reported on the disease since 1984 they have depression the emperic definition have 38% depression we don't know but let's define the patient, but we have people who have been sick for 40 or more years, RKI didn't switzer and trade sample s with a lab that

stoy - enogh nobodys trying to get a negivtive results.

hj -

stoy -

coffin - we got to get this sort this out before we start druggs but we are not their mean time lay off the drugs

??? don't offten find rv most gibbons don't get ill

sniderman ny- passager virus?? since you can't give the kocks postulate how can the find pathogensis

john - hiv giving the arv showing the disease was an argument for showing causality but we had a lot more science under us befoer that happened and we don't have the at yet. Nowif we could quaintative assays then maybe yeat then maybe we could

???? hiv and hemophiliacs so you were closer

coffin - but until we get the right assessys
bell- progress hive thour the mistakes we lost people who were not able to side effect to tret people with the drugs to keep from making the same mistakes

???- we learned a lot from HIV epidemic and the hemophilia took the brunt of it, dr. bell? but I have to say that that NHIBL repository's helped to make linked to donor and recipiant and tap and try to identify xmrv epidemiology

??? don't take a heterogenoud groups gets assembling a group of patiens with cfs and well as controls and dfine and standard collection and establish and if you can quanitiy it then you could do a clinic trial but we have to define the patients. we need a step wise approach and do phase 1 and 2 and then longer term for clinica benifit

judy - hundreds xmrv positie people who are very sick and the commentary in those patient population and have not had a life for 25 years and more than the

???? i think you are on the right track but independy validated, and not the underliying sceptiums of people who are bed bound, and extended to diffrent groups

judy - independent groups validated and the patient exits, three positive and posters and followed using dersu assays. there are signiicant numbers with the virus from diffrent gourps

coffin - quaintative virus assay in a patient cohort and then maybe do a study to look at the arv could happen soon but the assasys that we have now but we need a quaintave assay that gives u a reproducable result. Then we could do something like tat with cross overs and monitor clinicly.

stoy - other issues

nation c inst - HPV animal model then you can make it certain, induce illness,
 

Lynn

Senior Member
Messages
366
Who was the guy on the right? He was pretty rude taking the microphone away form Judy. Why were they sharing one and would he have leaned over to take away another panel member's mike?

Lynn
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Chatter at the end after closing:


"I'm literally more confused than I came"

"I DO know things you haven't heard"

"We don't KNOW!!!"
 

Esther12

Senior Member
Messages
13,774
Oh! They've finished early!

Did I hear someone (Judy?) say that in the poster sessions there were two negative German studies and a negative Swedish one? But some more positive ones?

There was some mumbling at the end which sounded potentially interesting. Did anyone catch it? What was the context for : "I DO know things that you don't know" (said by a man? My speakers were turned down low at that point. Anyone recording and able to clean up the audio?


I thought Mikovits body language was a bit poor when talking with McClure.

There wasn't any new info really.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Mindy was great, but why did Stoye say, ‘were not going to discuss policy in Britain’? No one mentioned the UK.

Maybe it has something to do with him stating, “no one is doing negative studies!”, and he could help but say, Britain!!

Myra cetainly made her, um presence felt. Why does she hate Dr. Mikovits so completly?????
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Who was the guy on the right? He was pretty rude taking the microphone away form Judy. Why were they sharing one and would he have leaned over to take away another panel member's mike?

Lynn
Jonathon Stoye, chair of the session, intervening as off-topic argument was beginning.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
I think John Coffin and Judy are not that far apart on clinical trials--but Coffin is right, one has to be very careful or they could backfire. Mindy was great, but it seems clear that we see a bunch of professionals who will not countenance open attacks on the CDC, but who are probably smart and wily enough to bypass and negotiate around them to get where they want to. I think in a while it won't matter if the CDC puts out another negative study--and I don't think they will. Reeves is past history. Let the smart folks get on with business--and I think and hope they will. Chris
 

dancer

Senior Member
Messages
298
Location
Midwest, USA
Wow...that was interesting and a bit overwhelming.
They left the mic on for a while afterwards, and I was hoping to eavesdrop on some chit-chat, but couldn't catch much.
 

leela

Senior Member
Messages
3,290
Who was the smug guy that shut Mindy's brilliant points down? What is the deal with people really not wanting to face that defining the illness
is so important? It's like some irrational taboo or something. Why not just let her make her point?
She was great, so was Dr. M.
The whole thing makes me feel hopeful that at least now there is attention which may likely=$$$ on ME/CFS.
Did anyone else feel a little irked that several of the panel members kept calling it "chronic fatigue" ?
 

Rita

Senior Member
Messages
235
I loved the last speech of Judy.."We have therapies............."That is what we want and we need..
How about the posters from De Meirleir and other felows that Judy mentioned like positives studies?
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
I loved the last speech of Judy.."We have therapies............."That is what we want and we need..
How about the posters from De Meirleir and other felows that Judy mentioned like positives studies?

It was hard to tell but it sounded like three postivie presentations and then there were posters from Cheney, DeMerliner and someone else, but I'm not sure that that is correct.
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
similar to Bob, my very scratchy notes...summary to follow...

ETA: That's not fair to Bob actually, his are vastly less scratchy than mine... :)

Jonathon Stoye, Virologist, UK
Judy Mikovits, WPI
John Coffin, NCI
Jerry Holmberg
Don Blair

Coffin a former mentor of Stoye - "that should disqualify" (?)

Stoye:
Policy not science; I will determine what that means

QN: How many Clades?
Stoye: Had hoped it would be answered, not sure if it is. 0,1,2,more pathogenic agents
Coffin: Clearly multiple sequences identified, as yet we can only refer to one, XMRV, which is a replicating virus, don't know which match; only have fragments and not complete sequences. MPMP group are distinct.

...

Mik: Let's start sequencing the entire genome

QN; Methodology being argued so differently vehemently. CFS patients are hanging on this. What are the prospects for a unified consensus re +ve vs -ve, is that on the horizon

Mik: I think so; isolate DNA from plasma; Nice assay and blood workin group, I think we're getting closer
Jerry: This is the hope of the blood working group. Started with blood supply but we're going to come out with standard methodologies, even with sample preparation and time to processing.
Coffin: less than a year, really a short time. 6 months of talking to seet up blood working panel. Optimistic that say within the next year
Different assays for different purposes in HIV. Right now we're still in a zone of chaos, but I'm optimistic we'll get there soon

QN: I am struck by the highly divergent prevalence of detection of anything among cohorts with CFS. From 0% to 78%. I propose a simple way to add clarity: the same patients be tested by multiple labs. Blood supply group doesn't help, leaves patients in the lurch. Propose collaborative group, NEUTRAL PARTY take samples and as a repository, unless we start testing the same patients with different methodologies we're really not going to get anywhere. We all have to be testing the same samples, what plans?
Jerry: Through the clinical panel we will be able to characterise some of the patients. We have to make sure we have a good cross section, we really need a geographic distribution of this. Lack of a standard, hopefully we get that from blood working group
Mik: Chenecy, Bell, Peterson, Kamaroff; experts at diagnosis, saw same patients, those are geographically diverse, they are getting same results. We can pull positives from each of those

Stoye: to immunol complaining about virol. Around nucleus of blood working group there will be clarified assays.

Part of confusion may be to sequence bias of the nucleus ? test. Iron curtain going through Europe, different assays in mice. Tests north and south of this border. Durss assay may not have this sequence bias
Stoye: I don't think multiple passaging can be a gold standard. Need either antibody or PCR to screen large numbers. Long term goal must be PCR or serological assay

QN: Data on performance of docs re criteria use by doctors
Mik: Criteria are really subjective. Been looking for biomarkers for decades because so heterogeneous

QN: Consistent inconsistency. Must be Collection and storage prior to processing
Mik: Have learned in last 2 weeks that processing may be a key. Opportunity for processing prorocol to find plasma and blood products without culture

Mindy Kitei: Treatment? When drug trials, where, when, why, no, nothin>
Coffin: premature until pathophys. Against AIDS: Block HIV replication. HIV: constant replication. Surprisingly, surprised by this about HIV, nothing else behaves like that. Only the over-replication means that anti-tretrovirals work. Prostate Cancer: confident that's not the case. Very unlikely to be replication. CF: might have porential for replication if the virus is involved. Trials could reasonably resolve that. But until we can assess what's happening with the virus, it's really premature
Mik: how long will that take?!
Coff: premature to do off label anti-retrovirals we will learn less than nothing from the anecdotes that come out of that

QN: Mikovits please answer too
Mik: I can't answer that

QN: Speculate on mechanism to explain variability beyond technical reasons
Stoye: Until that reconciliation, we can't address the more interesting ideas.
Don: From carcinogens, many people exposed, not everyone gets it. Genetics of host and the things we don't udnestand about cancer, equally true for CFS, at this point we don't know enough

QN: What fuels trials question is funding
Don: I knew someone would ask. Great interest in NIH and NCI. Watching this area and deciding best thing to stimulate it. Not clear what that is. Very few RO1 applications. Mechanism for normal process exists and is there.
QN: Multi-disciplinary?
Don: that's up to the PI and those mechanisms exist and are being used.
Coffin: enormous work has been diverted into this. Testimony to resilience of US and international science; no need for top-down plan. Momentum will run out without additional money, to sustain this.
A real zone of chaos. Proceeding along quite well frankly
QN: Number of negative is precuding and scaring people off - people say: if it's really there, wouldn't be so hard to find. Swedish, 2 german studies, very compelling
Mik: because focused on PCR, that's not how retrovirologists have identified previous retroviruses. Use complementary methods as we did with HIV and HTLV1, not just simple PCR
Qn: can't agree with that. Serology is backing up PCR. At least 50 positives from london area, many more.
-- argument ensues with mikovits ---

QN: reasonable things from FDA and CDC: -ve vs +ve. Negative PCR is not a standalone assay.

QN: accepting +ve in both, hypothesis RnaseL pathway, most studies find no such prevalence, so original reason for searching doesn't seem to exist. can speculate why it's in these two? immunosuppression
Mik: looking at single snp in original but there have been defined other assays,
Stoye: speculate that it could be some other defect, or environmental effect suppressing immune
Coffin: disease could cause virus and make it visible

QN: separate prostate and cfs. therapies cfs people can get leads imagination astray. draw line and say epidemiology not the same. Multiple ways transmitted, different pathogenesis

QN: lots of different viruses from virochip.
Mik: idea is retrovirus creates it, sickest of sick is tip of iceberg, that's the hy[potheis were following
QN: XMRVs aren't generally ubiqutuitous and not benign. Not been a passenger in other human retroviral diseases. First gamma.

Kitei: negative studies. Having reported since 1994. Many of these patients don't have CFS, they have suppression. Leonard Jason has studied this. Cohort doesn't even have disease. Patients desperate for 40 years, but have to call a spade a spade. For instance the CDC. You seek what you want to seek. I think it's important that we see things as they are and not how they want them to see.
Stoye: nobody wants to get a negative result. It's incorrect to suggest that's the case. Not here to discuss the CDC
Coffin: without the patients dying we wouldn't have got so far so quickly.
Don: hemophilia were the canaries in the cage. we learned we needed repositories.

Qn: define prevalence first

Mik: we have identified 100s of +ve people and isolated virus, very sick. For them benefit outweighs the risk, of multiple trials.
Q: your findings must be validated independently. Several zeros in bedbound
Mik: independent confirmation from 3 groups. sig numbers of people sick, with the virus, in whom trials could be started (applause)
coffin: quantitat reporducible for virus, in a cohort, poss to start small scale studies, just to look at effect of antiretros on that ohort. But really need quantitat nucleic acid assay, with reproducible range, adequate to follow what's happening. few weekson, few weeks off, but bare minimum is to quantify, but need a reproducible assay. giving drugs to patients off label will not help anybody except the patient, you don't get anywhere that way

qn: naive suggestion, NCI. HPV, Hep B etc can be detected. For CFS you can never get 100%. If you want to prove XMRV causes prostate, need an animal model

qn: htlv1 causes neuro and leukaemia, anyone know why?
answer: no
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Who was the guy on the right? He was pretty rude taking the microphone away form Judy. Why were they sharing one and would he have leaned over to take away another panel member's mike?

Lynn

On the right of our screens? He was the chairperson of the session, it's his job to grab microphones! :Retro smile:
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
It was hard to tell but it sounded like three postivie presentations and then there were posters from Cheney, DeMerliner and someone else, but I'm not sure that that is correct.

I count 4.

Mik: Cheney, Bell, Peterson, Kamaroff; experts at diagnosis, saw same type of patients, those are geographically diverse, they are getting same results. We can pull positives from each of those
 
Messages
80
Location
Amersfoort, Netherlands
How naive of the chair to assume (and close the dicussion because of his belief) that there is nobody who WANTS to find a negative XMRV result! British and Dutch studies were clearly designed to protect reputations, jobs and prestige of the psychiatric CFS lobby, and I can think of more than one reason why the CDC didn't want to find XMRV either. Scientists can be so naive when it comes to the politics in their trade. Science isn't always self-correcting when politics and economics are involved.

By the way: Who was the enormous pompous a....ole on the front row? Caracteristics: boldish, glasses, arrogance and NO empathy with the patients. The typical male, biased CFS-denial-patient.

Judy M. almost got into a catfight with McClure, but I think she did a great job representing the WPI.
 

FancyMyBlood

Senior Member
Messages
189
The big news for me was Judy saying that with the blood working group, just over the last few weeks have figured out that collection and processing issues are almost certainly the reason for diverging results of different studies.

That was my biggest reminder also. Solely based on their body language it seemed to me the two knew MUCH more than being said at this workshop. Maybe that's one of the reasons he came across quite 'positive'. I could be just speculating (which I normally absolutely abhor), but this is the feeling this webcast gave me.

I have a pretty positive feeling about this workshop, while we hardly haven't heard anything about the positive studies I'm pretty confident the near future will be a bright one!
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Who was the smug guy that shut Mindy's brilliant points down? What is the deal with people really not wanting to face that defining the illness
is so important? It's like some irrational taboo or something. Why not just let her make her point?
She was great, so was Dr. M.
The whole thing makes me feel hopeful that at least now there is attention which may likely=$$$ on ME/CFS.
Did anyone else feel a little irked that several of the panel members kept calling it "chronic fatigue" ?

Yes the chronic fatigue was annoying.

Stoye said from the outset: science not policy, meaning science not politics.

Well done Mindy for getting the elephant back into the room.

They want to take the politics out of it, but the confusion can't be resolved without reference to issues like the CDC cohort studying the wrong people.

I think they are right to try to focus on the science, but at the same time the confusions can only be clarified with reference to the politics. It's sad that politics gets involved in the science, but as we keep saying, that is simply unavoidable because it is already the case; it has already happened. Scientists who want to resolve this have to understand that, I'm afraid. That's my view of it...
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Oncer again John Coffin came across as the smartest guy in the room. And I love him, but I hate hearing him talk because he says things will move along "quickly", like having an assay within the next year.:eek:

I don't want to hear about an assay in a year, I want to hear about a cure tomorrow.

Damn you John Coffin.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
We were talking about it in the chatroom. A few points made....

We all love Mindy. Very much. :D

Daffodil made an excellent comment that sums up the researchers' attitudes well:

It's as if no doctor other than Judy really cared at all about longterm patients who need help now. They were looking at us as unfortunate casualties.

I don't know about anyone else, but I'm not okay with being an unfortunate casualty.

I understand that for scientists, the name of their game is caution, replication, and ensuring they fully understand something before "jumping ahead" to treatment. I get that. What they don't get is that the name of our game is trial and error, anecdotes, and personally acceptable risks. It isn't ideal, but it's what we've got and it's how we live, and until we're presented with another option that's what we'll continue to do no matter what the scientists tell us. Don't like it? Then give us an alternative. We can't wait another decade or two for you to make up your minds.
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Coffin and others may be positive that there will be a validated agreed assay reasonably soon, but I remember he set a fairly confident estimate for completing the first job - a standardised assay - of 3 to 6 months - he set that target back in Oct 2009. One year on, and the estimate now is...a few months...so have we moved forward?!