5th Invest in ME/CFS Conference - Programme May 24 2010

[MEisnotforme]

Dr. Huber clearly looked uncomfortable and came over to my husband who just happened to be standing outside the auditorium talking to someone, as the coffee break followed her talk, and asked him if he had understood her as she has quite a thick accent. He said yes, but asked her did she feel that the atmosphere was rather negative towards her, to which she replied "yes, I did feel a bit nervous". The room was very quiet after her talk.

I'm sorry but I can't answer how many people were there, but the place was bursting, and it was impossible to say the ratio of patients to medics/scientists.

I was talking with one of the organisers the evening before and she said people were begging for tickets right up until the afternoon of 23rd May. The Venue would be better if it were larger, but the organisers looked at different venues, but as its London, they all want payment up front, and are very expensive and you may have seen from other posts, InvestinME is just three very dedicated ordinary people working with very little money, two are the parents of children with ME/CFS and the other has it herself. I really don't know how they do it - really amazing as they seem to do it with so very little cash, and they are very quiet modest people. I admire them so much. I heard from someone that one of them had worked through the night on three occasions, and then gone to their daytime employment. How is that for dedication?? I can't mention their names as they prefer to just get on with working in the background trying to make things happen. So if they or any of their family are reading this, if there is a heaven, they will certainly be in the front row!!

Why does it take parents of children with ME/CFS to do so much (Annette & Harvey Whittemore in the U.S. and the InvestinME people in the u.k.) to get things moving when all these state and government agencies get loads of money and do nothing for the condition.

 

[natasa778]

I admire them so much. I heard from someone that one of them had worked through the night on three occasions, and then gone to their daytime employment. How is that for dedication?? I can't mention their names as they prefer to just get on with working in the background trying to make things happen. So if they or any of their family are reading this, if there is a heaven, they will certainly be in the front row!!

I agree, the conference was so well done I have nothing but praise and admiration for those three guys/girls.

Sadly quite a few seats were empty, there must have been at least 20-30 delegate packs left over, probably people who could not make it at the last minute

 

[Gerwyn]

I know that the WPI and the other labs associated with the Science paper took great care to ensure that there was no lab contamination involved. Now this may seem to be a stupid question, and I sincerely hope that it is just the product of an over-imaginative unscientific brain, but can we also be reassured that no external contamination, such has apparently influenced the Huber study, could have accounted for the Science results? I know I am committing heresy by even suggesting it, but is this possible? (I just so hope that the answer is an unqualified 'NO'. )

Someone??????? :worried:

No there are different strains in different people.A contaminant would be identical.XMRV also produced a phenotypic change in the immune system a contaminant could not do that

 

[rebecca1995]

Thanks to our UK friends for the rapid reports!

Lots of speculation below.

Dr. Klimas told us we should expect a positive XMRV study in the near future. Someone on the German study thread speculated that she was referring to the Huber or CDC papers. Since Huber's study is negative, does that mean the CDC paper will be the replication we've been waiting for?

Oh, wouldn't that be sweet justice!

On the other hand, do we really want all those "unwell" people in Wichita and Macon County testing positive? I mean, the more healthy controls have XMRV, the more difficult it'll be for us to fulfill Koch's Postulates! :Retro tongue::tear:

 

[Adam]

Dr. Huber clearly looked uncomfortable and came over to my husband who just happened to be standing outside the auditorium talking to someone, as the coffee break followed her talk, and asked him if he had understood her as she has quite a thick accent. He said yes, but asked her did she feel that the atmosphere was rather negative towards her, to which she replied "yes, I did feel a bit nervous". The room was very quiet after her talk.

I'm sorry but I can't answer how many people were there, but the place was bursting, and it was impossible to say the ratio of patients to medics/scientists.

I was talking with one of the organisers the evening before and she said people were begging for tickets right up until the afternoon of 23rd May. The Venue would be better if it were larger, but the organisers looked at different venues, but as its London, they all want payment up front, and are very expensive and you may have seen from other posts, InvestinME is just three very dedicated ordinary people working with very little money, two are the parents of children with ME/CFS and the other has it herself. I really don't know how they do it - really amazing as they seem to do it with so very little cash, and they are very quiet modest people. I admire them so much. I heard from someone that one of them had worked through the night on three occasions, and then gone to their daytime employment. How is that for dedication?? I can't mention their names as they prefer to just get on with working in the background trying to make things happen. So if they or any of their family are reading this, if there is a heaven, they will certainly be in the front row!!

Why does it take parents of children with ME/CFS to do so much (Annette & Harvey Whittemore in the U.S. and the InvestinME people in the u.k.) to get things moving when all these state and government agencies get loads of money and do nothing for the condition.

I heard it was only three people. That is amazing. I feel humbled.

 

[Countrygirl]

Gerwyn;84924]

No there are different strains in different people.A contaminant would be identical.XMRV also produced a phenotypic change in the immune system a contaminant could not do that

Thanks for your reassurance Gerwyn. It is much appreciated. I have read this so many times, but just sometimes I just need to check that the WPI are absolutely on course, as it is so crucial that their results cannot be seriously challenged. It is looking good. Thank you

C.G.

 

[Knackered]

Thanks to our UK friends for the rapid reports!

Lots of speculation below.

Dr. Klimas told us we should expect a positive XMRV study in the near future. Someone on the German study thread speculated that she was referring to the Huber or CDC papers. Since Huber's study is negative, does that mean the CDC paper will be the replication we've been waiting for?

Oh, wouldn't that be sweet justice!

On the other hand, do we really want all those "unwell" people in Wichita and Macon County testing positive? I mean, the more healthy controls have XMRV, the more difficult it'll be for us to fulfill Koch's Postulates! :Retro tongue::tear:

According to the main website, two papers are waiting to be published, CDC and Huber, Huber's negative so I can only assume it's the CDC. Fingers crossed.

 

[kurt]

No there are different strains in different people.A contaminant would be identical.

XMRV also produced a phenotypic change in the immune system a contaminant could not do that

That just does not sound correct, a contaminant might have multiple strains, depending on the source. Particularly a reagent contaminant, where the cells have passed through many different generations where contamination could have been introduced. Or if multiple cell lines have been mixed together in the production process.

How do you know it was XMRV that produced the immune change?

 

[kurt]

According to the main website, two papers are waiting to be published, CDC and Huber, Huber's negative so I can only assume it's the CDC. Fingers crossed.

I have heard there are more than two papers in press, or in review right now. So not necessarily the Huber or CDC papers.

 

[Gerwyn]

That just does not sound correct, a contaminant might have multiple strains, depending on the source. Particularly a reagent contaminant, where the cells have passed through many different generations where contamination could have been introduced. Or if multiple cell lines have been mixed together in the production process.

How do you know it was XMRV that produced the immune change?

no kurt a contaminant does not have multiple strains XMRV produced the immune change because it was the only virus present and was serotyped and found to be 99% concordant with known xmrv sequences

 

[flex]

The extraordinary thing about this alleged contamination is that it appears to know whether or not you are testing the general population or special cohorts. How you get a roughly 4% figure for incidence in the general population and much higher in a cohort like PC, CFS/ME, FM, asthma, etc. has never been addressed. When approximately similar findings turn up in laboratories on different continents, it is time to reconsider.

Exactiment!!!

I was at the conference and wish I had gone prepared with some written questions, which makes it doubly frustrating that all the top docs and scientists there didn't raise this. We, the patients, were all so exhausted and brain fogged from the immense journeys we had to undertake, and it seems that if we had been more rested we could have raised these issues.

An idea for any future conferences or meetings would be to have people submit questions on this forum for attendees to read out and direct at people like Huber.

 

[jspotila]

That just does not sound correct, a contaminant might have multiple strains, depending on the source. Particularly a reagent contaminant, where the cells have passed through many different generations where contamination could have been introduced. Or if multiple cell lines have been mixed together in the production process.

Can someone expand on the difference between lab contamination versus reagent contamination? How could it play out over time? For example, if reagents were contaminated, could different batches be used in one study making it theoretically possible for some but not all results to be affected? I'm too tired to go check my memory against the XMRV papers, but don't studies use many different reagents and/or primers (not sure I even understand the distinction) in the process? It just seems like there would be a difference between mice running around a lab shedding virus everywhere as opposed to some of the products used in a study being faulty. And how would a researcher establish the existence and nature of contamination?

 

[ukxmrv]

Kurt,

As above....

If you have time and I really do appreciate that you may be too busy, would you please be able to expand on your comments about the contaminants?

Especially the reagents. What about the culture (like the Lncap)?

What would be the process that a contaminant could have multiple strains?

Don't feel under any pressure to post again. Any input would be much appreciated here and valued.

 

[Bob]

To try to reassure people on this thread...

There are many ways that XMRV has been proven not to be a contaminant...
(I'm too tired tonight to list all of the factors which show why XMRV isn't a contaminant, or an animal virus, but I will do so tomorrow if people want me to.)

XMRV does exist... There are photographs of it and gene sequences of it... The actual existence of XMRV, as an organism, is an undisputed fact, as far I know. It is not a mouse virus... It is an exogenous human retro-virus.

XMRV has now been tested for, and found, in humans, in a few different independent laboratories now, including in Germany and Japan... The only studies which have not managed to find XMRV are the ones which did not replicate the original Science study methodology, but used unsuitable or old fashioned HIV testing techniques instead.

But there are still questions remaining to be confirmed for us about XMRV... such as... what percentage of the wider ME/CFS community are infected with XMRV? And is XMRV a causal agent, rather than an opportunistic passenger? (i.e. does XMRV actually cause ME? or is it a harmless virus which easily infects people with an immune system weakened by ME? Or a third scenario is that it could be a harmful opportunistic virus which gives us some of our symptoms, but it's not the actual cause of ME.)

The WPI team seem to be sending out signals that they are pretty confidence that XMRV will be shown to be the cause of ME... but it hasn't been proven yet, and is still too early, scientifically, to say for definite... There have been so many pathogens connected to ME in the past, and there is still loads of research going on with other pathogens... But, to my mind, finding the third known exogenous human retrovirus in 97% of CFS/ME patients still seems like pretty BIG news!

 

[ixchelkali]

CCD / CCC = Canadian Consensus Definition / Criteria.

I added them to the Commonly used abbreviations in this Forum sticky.

Thanks, Sam and Otis. It was the D for Definition that threw me. I'm more familiar with its being called Canadian Consensus Criteria. I probably could have worked it out if I wasn't so brain-fogged when I read it.

 

[bluebonnet]

But there are still questions remaining to be confirmed for us about XMRV... such as... what percentage of the wider ME/CFS community are infected with XMRV? And is XMRV a causal agent, rather than an opportunistic passenger? (i.e. does XMRV actually cause ME? or is it a harmless virus which easily infects people with an immune system weakened by ME? Or a third scenario is that it could be a harmful opportunistic virus which gives us some of our symptoms, but it's not the actual cause of ME.)

I think that the WPI team are sending out signals that they are pretty confidence that XMRV will be shown to be the cause of ME... but it hasn't been proven yet, and is still too early, scientifically, to say for definite... There have been so many pathogens connected to ME in the past, and there is still loads of research going on with other pathogens... But, to my mind, finding the third known exogenous human retrovirus in 97% of CFS/ME patients still seems like pretty BIG news!

Dr. Jaime Deckoff-Jones has tested X+ and is experimenting with antiretrovirals. This exerpt comes from her blog:
The good news is that if the drugs can move the illness, it is supportive of the hypothesis that XMRV is causative in the pathogenesis of the disease.

http://treatingxmrv.blogspot.com/2010/05/speculation-about-drug-reaction.html

 

[gracenote]

Here's a blog by CFS Patient Advocate on the conference. Very interesting, especially the comments on Huber. (Sorry if it's already been posted.)

London Conference May 24, 2010

 

[Knackered]

Here's a blog by CFS Patient Advocate on the conference. Very interesting, especially the comments on Huber. (Sorry if it's already been posted.)

London Conference May 24, 2010

Reading that made me feeling quite nauseated after reading about Dr Huber. Thanks for the link.

 

[natasa778]

Here's a blog by CFS Patient Advocate on the conference. Very interesting, especially the comments on Huber. (Sorry if it's already been posted.)

London Conference May 24, 2010

was it my waning eyesight, or was Judy looking in the direction of huber throughout her (judy's) presentation? talking about why qPCR in non activated cells is useless, how they went through xyz to prove contamination theoretically impossible etc etc she was ninja kungfu shreding to bits possible criticism all the while piercing huber.

could have been my eyesight

 

[Sam Carter]

was it my waning eyesight, or was Judy looking in the direction of huber throughout her (judy's) presentation? talking about why qPCR in non activated cells is useless, how they went through xyz to prove contamination theoretically impossible etc etc she was ninja kungfu shreding to bits possible criticism all the while piercing huber.

could have been my eyesight

What a fantastic image, Natasa: Judy Mikovits as a shredding, kung fu, Ninja - on our side! Brilliant!