From the 1st annual XMRV conference

[Mark]

Altho Dr. Coffin seems really kind of 'stuck' on the need for quantitative assays to measure viral load before even small clinical trials (can't you just measure functioning? How about activity levels?)

Yeah good point - considering that our existing (UK-accepted) research is based on questionnaires about our mental state, it's a bit rich, innit? They don't seem afraid to risk our lives on a GET treadmill based on flimsy methods...

One thing I wondered is: why not measure the existing candidate biomarkers, in patients that display those abnormalities? Other viral infections, T-cell counts etc...if you found those metrics were affected, you'd also have some evidence as to how all that part works...and evidence that reducing HRMV load was actualy helpful. If you just stuck purely to measuring HMRV levels, then at the end of that people would say: OK, so antiretrovirals reduce HMRV viral load - so what? Still doesn't prove that's relevant to anything...

...he certainly is an impressive thinker - the most impressive one I thought. I felt he worked hard to keep the door open when people with negative interpretations chimed in.

Absolutely, he thinks and talks so fast yet it all goes in, for me at least - and he really knows his stuff; his verdicts on everything are based on real experience and understanding. And as you say, so balanced and diplomatic: a great man! I'd have liked to see him chairing things actually, guess they thought it might cramp his style, or maybe he's seen as being on the WPI side of the fence, but I think he's well suited to that role.

It was interesting to hear him say...I think we're doing pretty well even though we're in this 'zone of chaos' or however he put it...we're right on track !!!! (I wonder what off-track is like ).

That's what I meant by saying earlier that the more intense and energetic the discussions, the better! We're in a zone of chaos, and that's exactly where we want to be! So long as it's kept productive and they all keep talking, they are raising all the right questions. How this works is all so complicated that it's going to keep raising more and more questions and open up loads of areas - the zone of chaos is good!

 

[Mark]

Seems to me that as far as the scientific researchers go, we are like lab mice.

ME-CFS patients=Lab mice

And the irony of our probable infection with a retrovirus from mice.

Keep telling you, it's those murine scientists at it again...measuring how long it takes human races to respond to retroviral epidemics.

 

[Mark]

I felt the new study by Ian Lipkin was good news. My major concern is with the patient selection. It's very important that plenty of sickest patients of Dr Komaroff, Dr Peterson, Dr Bell, and Dr Klimas are used in this study.

His brief is to resolve the discrepancies and controversies. Surely he can only do that by comparing lots of different cohorts? He has to span the whole space and see the big picture.

One problem he might have: did I read right that the CDC study used the very last drops from their heperenized telesales exercise? Such that there's no evidence left about all that?...

This is a department with a documented history involving the illegal redirection of funds, where the chief suspect got to stay on by blowing the whistle. This might be worth pointing out to Francis Collins...

 

[Mark]

But individual patients using off-label antiretrovirals doesn't take money away from the common pot. Especially since insurance won't cover it so the patients themselves are paying up the wazoo for them. I suppose you could make the argument that they should donate that money to the common cause, but that's a stretch.

I agree, fair point, it was a real stretch!

When he was talking about whether it makes sense to start clinical trials now, what you say applies, but he seemed to also condemn individual use. He may be right that for most of us it's ill-adviced at this point, but as long as it is a fully informed decision, I think the severely ill shouldn't be judged if they decide to try it.

Oh I absolutely agree: it should be an individual's right to choose. The ethical argument comes in with the 'informed choice' part, and the difficulty of giving balanced information sufficient to make that informed choice. I read Coffin not as condemning or judging patients, but really strongly cautioning them and advising them about the risk/benefit ratio. As I mentioned earlier I thought I heard Mikovits give a note of caution on that front too.

You can't say, don't judge us until you've walked a mile in our shoes, because if we could walk a mile it wouldn't be an issue!

Never criticise a man until you have walked a mile in his moccasins. By then, you will be a mile away - and you will have his moccasins.

 

[Mark]

I agree with you Cort. Why can't functionality be a measure of success with ARV trials?

Probably because doctors are trained these days to assume patients are lying and tests are G-d!

Spot on! The entire premise that such measures are unreliable is based on the idea that what the patient says cannot be trusted. They would say "oh we don't mean you're lying..." and then babble on once again, but that's the whole problem, isn't it? Don't know how you get them out of that mindset.

In that, I think that life has taught all of us CFS/ME sufferers a boatload more than most of those technically proficient MDs and PHDs in that room. It may be a lesson that only compassion can teach.

Amen to that. Somehow it seems you can only really understand all this with the data that being inside the situation provides. And that's the very thing that is considered too subjective to be admissable evidence.

 

[Mark]

...most of the time, feeling like the canary in the mineshaft is okay with me, because it means that maybe somewhere, sometime, something good can come from my suffering, even if it's just to prevent someone else from going through it. Perhaps not a rational thought, but some days I take my comfort where I can find it.

I think that's an extremely rational thought. Unfortunately, the society around us is drastically less rational, because it is ignoring the canaries.

 

[Mark]

ETA: I've seen that in quite a lot of posts. What does that mean?

Lynn

Edited To Add

 

[Mark]

One nagging concern that I have is that it is very clear that the current center of attention is XMRV and not CFS. This would be like saying that 25 years ago the center of attention was HIV and not AIDS. If HIV turned out to be just another co-infection of AIDs 25 years ago and not its cause would they have abandoned research on AIDs simply because it wasn't caused by the newest retro-virus. Of course not....

As I mentioned in another post, it is CFS that we must be pushing the NIH to fund research for, regardless of its cause. There is plenty of evidence (as I mentioned in the other post, link to Dr Komaroff's latest video) that this is a serious, physical, disabling, permanent illness without a known cause, with an unknown means of transmission, and with at least one million US citizens suffering from it.

...

This is the difference between WPI and most of the other researchers investigating XMRV. The WPI is committed to finding the cause, prevention and cure for CFS. Most of the other researchers, including the NIH are focused on XMRV.

This is the best opportunity to get attention and research funds focused on research for CFS that has ever happened. We should be taking every opportunity to make it clear, to the NIH, and whoever else we can, that we want CFS to be researched, now, whatever its cause.

Great post SA2 (#433): crucial points. Our role is to take this great opportunity to make just these kind of points.

 

[Anika]

Not enough blood?

His brief is to resolve the discrepancies and controversies. Surely he can only do that by comparing lots of different cohorts? He has to span the whole space and see the big picture.

[I]One problem he might have: did I read right that the CDC study used the very last drops from their heperenized telesales exercise? Such that there's no evidence left about all that?...[/I]

This is a department with a documented history involving the illegal redirection of funds, where the chief suspect got to stay on by blowing the whistle. This might be worth pointing out to Francis Collins...

I think that a number of researchers have issues with not having enough blood to share or to do all the testing they'd like. Alter's group, for example, said they didn't have enough blood to share with CDC for CDC to do their tests. (This was from samples stored by Lo over 15 years ago, not the retests of 8 current patients.) (It's possible - my speculation - that they had some left, but just not enough to share after doing further studies of their own.)

The CDC paper said their study included all patients from the cohorts they named for which they had enough blood available (something to that effect). THere were a fair number of patients for whom they didn't have enough blood to do their own tests (which I'd like some explanation of). Then in turn it looked like CDC may have turned over only 30-plus samples to Lo/Alter for testing. I haven't seen anything about whether CDC held any samples back or not. But it does seem like they're running out of blood from those cohorts.

There does seem to be competition for blood going on. I'm not sure what WPI's samples are, but I don't think they have samples to share from every patient whose results were included in the Science paper, for example. I'd be interested if someone could clarify what samples WPI has available to share.

 

[Mark]

The chair of that session was quite right to kill of political stuff. Hard but necessary.

Very well argued post #438 Sean. The only part I disagree with is that the definition of CFS that forms the basis for cohorts in a study is not a political question, it's a crucial scientific question - indeed the crucial scientific issue that explains what's really going on. The political part comes when you start apportioning blame or ascribing motives.

 

[bullybeef]

Did anyone whom watch the Q&A noticed that they said XMRV has been in humans for tens of thousand of years!! That's a bit more than 50 years they first assumed.

 

[Dr. Yes]

One nagging concern that I have is that it is very clear that the current center of attention is XMRV and not CFS. This would be like saying that 25 years ago the center of attention was HIV and not AIDS. If HIV turned out to be just another co-infection of AIDs 25 years ago and not its cause would they have abandoned research on AIDs simply because it wasn't caused by the newest retro-virus. Of course not. AIDs was the disease and a very serious one, not just the cause. It was research into AIDs that was being funded not research into HIV per se. Identifying HIV and demonstrating that it caused AIDs was an effort to understand, prevent, and treat AIDs.

As I mentioned in another post, it is CFS that we must be pushing the NIH to fund research for, regardless of its cause. There is plenty of evidence (as I mentioned in the other post, link to Dr Komaroff's latest video) that this is a serious, physical, disabling, permanent illness without a known cause, with an unknown means of transmission, and with at least one million US citizens suffering from it. Whatever worries the world blood supply has about XMRV continues if XMRV is not the cause of CFS, since some other unknown pathogen is likely still lurking in the supply. But the problem is not just with the blood supply, the problem that this disease continues to destroy the lives of new people every day, regardless of blood transfusions.

I got this disease 21 years ago and have suffered severely ever since. When none of my family got sick I was relieved, at least it was only me. Then 7 years later my daughter got sick with it, suddenly, just like me. She went from being the top student in her high school to being bedridden, and chronically ill. She barely made it through school. Struggling to do her school work from her bed.

Now I help my wife care for some of our grand children. What about them? What next?

XMRV has gotten CFS in the lime light but it is up to us to make sure that it is CFS that is funded and researched. If the XMRV causes CFS, then great, we are all the closer to preventing CFS and treating and curing CFS. If XMRV is not the cause of CFS then let's move on quickly and find the cause, whatever it is.

This is the difference between WPI and most of the other researchers investigating XMRV. The WPI is committed to finding the cause, prevention and cure for CFS. Most of the other researchers, including the NIH are focused on XMRV.

The key to making this happen lies with ourselves, those who suffer from CFS. We know better that anyone the physical reality of this disease and its terrible devastation. Like Annette Whittmore who knows this illness through her daughter's suffering, it is up to us to let others know, before they too perhaps become its victims.

This is the best opportunity to get attention and research funds focused on research for CFS that has ever happened. We should be taking every opportunity to make it clear, to the NIH, and whoever else we can, that we want CFS to be researched, now, whatever its cause.

Great post, SA2 :Retro smile:

 

[eric_s]

In which city in Spain are you? Do you know there is a research team about XMRV and immunological abnormalities of CFSs in Spain, in Barcelona? Hospital Germans Tries i Pujol, Badalona, Barcelona,Catalonia.
I desire to you a good stay and not very hard winter

Hey Rita

For some strange reason i couldn't log in yesterday. Now i'm in Barcelona and in the evening i will be going back home to Switzerland. I had to hang around here for 2 days, because in France there's a strike and my train was cancelled. Before that, i was in Malaga and wanted to change train here. Barcelona is cool too, but in winter it's a bit cold, that's why i prefer Alicante or Malaga.
Thanks for telling me about that research. Right now, i just want to go home, but maybe another time i will try to contact them.

Saludos
Eric

 

[taniaaust1]

I think the problem with that, at least from the viewpoint of a scientist like Dr Coffin, is that those things are pretty subjective to measure, plus with a relapsing and remitting disease, it's hard to say if it's the result of the drug. That sort of fuzziness is what has caused problems with the case definitions and patient cohorts. He's looking for an objective measure. But he's looking at it from a research perspective. We patients don't care so much about being able to measure it, if it means we can get out of bed and out of the house!

What i find irronic is the fact that all the psychological studies base whether their treatments work or not on changed functioning alone... but it seems a study based on us taking AIDS drugs, wouldnt be classified as a good study using that same thing to guage success or not.

Does this mean that all the psychological studies werent good including all the ones done by the government departments in the past???

Its interesting how what makes a good study, the criteria is varying in the different fields, seems a kind of bias thing there. What is good enough to proclaim success with psychological studies is said not to be good enough to use in retrovirus med studies. I think its pathetic that the very sick has to wait till scientists sort themselves out more when surely even if it is a very small study of using these meds in XMRV postives, could be started. Why is what was good enough before, suddenly isnt good enough now for even just a wee study being started?

 

[taniaaust1]

Very well argued post #438 Sean. The only part I disagree with is that the definition of CFS that forms the basis for cohorts in a study is not a political question, it's a crucial scientific question - indeed the crucial scientific issue that explains what's really going on. The political part comes when you start apportioning blame or ascribing motives.

I think they did an excellent job to keep the conference on track and keep the politics out of it hence have that take up good valuable scientific discussion time.

I guess the politics can be sorted out later.. after testing has been sorted out and has peer approval.

Lets review how far things have come
1/ Virus discovered.. and the existance of XMRV and MLV in humans is now confirmed.
2/ Virus found to be higher in ME/CFS (there isnt ONE study out there which says it is found in equal numbers between CFS and control group so hence does prove something is going on).
3/ Approved testing SHOULD be publically available within a year which is mutually agreed upon which should include titres
4/ Hopefully things then wont be about ME/CFS anymore for most of us... as we will be under a different name.

Im happy at the speed things are moving forward.. including how fast that first XMRV conference was organised, I dont think we can expect faster. As far as science goes... i think things with XMRV and MLV are moving faster then probably is normal in the field of science. (Its about time too for us!!)
..........

Ive been thinking.. it would be great if the major scientists who are working on the XMRV stuff could be sent Hilary Johnsons book as gift (those that seem openminded and not biased.. who knows even Alter may enjoy a read.. more informed i think the better)... some of them probably would read it and it would help them to understand the politics and why we act as we do. This would be a great way to educate them on everything. Maybe a group out there would collect donations or sponsorship to achieve something like this.

If we dont as a group (CFS patients) work on educating them.. we cant blame them for not knowing or understanding. Scienctists have inquistive minds.. so maybe a good relaxing read would be the thing.

 

[pictureofhealth]

XMRV Conference Q&A Transcript 8 Sept 2010 - Facebook - Thank you Parvofighter & team

For those of us who couldn't stay awake, or stay well, long enough to listen/watch to the Q&A at the end of yesterday's XMRV conference -

here is a link to a transcription posted by Parvofighter and XMRV Global Action on Facebook:

http://www.forums.aboutmecfs.org/showthread.php?7475-Transcript-of-1st-XMRV-Workshop-Q-amp-A

http://www.facebook.com/notes/xmrv-...t-international-xmrv-workshop-qa/438284026796

Parvo has posted this on a new thread on this forum under XMRV "Media, Interviews .." etc

Thank you very much for this huge effort to Parvo and XMRV Global Action.
This is just as well as couldn't find the link to last night's webcast on the www.videocast.nih.gov website this morning.
It doesn't seem to be listed as either current or archived. Perhaps NIH have removed it to check through for content and/or to transcribe themselves? Can anyone else find it please?

btw, thank you also to everyone who did the rough transcriptions late last night on this thread and to everyone who left comments here about the final Q&A overnight and in the early hours (Mark looked like he was doing it singlehandedly for a while!) - it really helped for those of us coming back to the topic for the first time this morning.

 

[Daffodil]

SA2....you are right about XMRV possibly not responding to ARV's. I think its the same story with HTLV-1 and certainly explains my situation.

However, some are responding. I have heard this from 2 doctors.

So I just don't understand.

Regarding getting treatment "nailed dow"....I really think this might take years.

Perhaps ARV's can stop disease progress if nothing else?

 

[Kate_UK]

This is just as well as couldn't find the link to last night's webcast on the www.videocast.nih.gov website this morning.
It doesn't seem to be listed as either current or archived. Perhaps NIH have removed it to check through for content and/or to transcribe themselves? Can anyone else find it please?

Is this any good? http://www.youtube.com/view_play_list?p=C48EFC7D6D7F217A

 

[pictureofhealth]

Is this any good? http://www.youtube.com/view_play_list?p=C48EFC7D6D7F217A

Wow - well done Kate_UK. The wonders of technology! Much appreciated, thank you.

 

[taniaaust1]

thank you Parvo and XMRV Global Action.

I was just reading the transcript on http://www.facebook.com/notes/xmrv-...t-international-xmrv-workshop-qa/438284026796 and wanted to share a part as its made me laugh.

Dr. Coffin: Sounds like classical virology to me… (laughter) But a complete sequence would be a good start.



Dr. F. Ruscetti: Sounds like a policy statement to me. I understand that. Do you think it’s going to have to be a recombinant from what we know about the mouse?



Dr. Judy Mikovits, Panelist: We actually have at least 500 isolates in LNCAP cells and in PBMC’s where we have the opportunity to put funds into getting complete sequences of whatever viruses is in there



Dr. (indecipherable): “You can’t do that”



Dr. Mikovits: “I know you can’t do that”. – but I think that’s a reasonable approach for starting, if you have natural isolates and you know they’re there, let’s start sequencing the entire genome..

LOL @ Dr Mikovits comments and the unknown doctor.