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

[Bob]

Bob, if you google Herv-18 and MS, you will see references to Huber's work, as well as references to cfs.

thanks bel

 

[DysautonomiaXMRV]

I'm really sad for Annette Whittemore & Dan Peterson travelling all the way to the UK and both not being able to present to conference? WTH ?!!!!!! (I have my suspicions they were warned off, and told to leave). Prof De Meirleir used to have an armed guard - the state intimidation over linking ME CFS to biological causes is rife in Europe. Wouldn't be beyond the realms of possibility. No one wants some 'yanks' coming over here telling us the truth now do they? Hence XMRV ''doesn't exist in the UK''. Remember? According to the BBC and every other news outlet going.

Suits the powers that be that the IVIME conference 2010 highlight is a failed XMRV study using a method incapable of detecting it (A la Wessely & Co). Thankfully America is less corrupt and has private health care systems where patients can travel to and get tested and eventually treated for XMRV. Unlike in UK.

 

[Bob]

Thankfully America is less corrupt and has private health care systems where patients can travel to and get tested and eventually treated for XMRV.
Unlike in UK.

It's interesting that the new government is proposing to allow our doctors to commission their own testing and diagnostics and treatments etc. (Don't know the exact details yet.)
That could give a lot of power to the family doctors like they have in Canada.

 

[jspotila]

Does anyone know if abstracts will be published from this meeting?

 

[MEisnotforme]

Hi jspotila - do you mean the InvestinME Conference, if so the answer is no a DVD will be available soon - well worth it as it is if all the conference.

The conference was really good and Dr. Judy got a standing ovation -it was really fantastic for us in the u.k. to get to hear her speak in person, although poor soul had a realy horrible cold.

 

[Rivotril]

I'm really sad for Annette Whittemore & Dan Peterson travelling all the way to the UK and both not being able to present to conference? WTH ?!!!!!! (I have my suspicions they were warned off, and told to leave). Prof De Meirleir used to have an armed guard - the state intimidation over linking ME CFS to biological causes is rife in Europe.

Peterson will present later this week in Oslo, Madrid, so he would come to Europe anyway.
And he's going to talk there I suppose, and Meirleir also

 

[Robin]

Prof De Meirleir used to have an armed guard - the state intimidation over linking ME CFS to biological causes is rife in Europe.

Seriously? Where did you hear this?

 

[Kati]

Standing ovation for Dr Judy??? I am getting goose bumps!!!
:victory::victory:

 

[kurt]

oh and btw that tufts study has been rejected for publication TWICE so far.

Getting a negative study published will become increasingly difficult now, regardless of the quality of the study, because with three already published, a negative study has a low impact factor. I have heard other negative studies are also being rejected by top journals right now because of low impact factor. (journals are rated for their impact factor, the potential impact of a study on their field, to stay on top like Nature or Science or Lancet a journal must publish only high impact factor articles)

I have just been sent a brief message from a friend who attended the conference, who said that in Professor Huber's talk about a retrovirus as a marker for ME, she stated that her study was negative for XMRV and that the reagents proved to have been contaminated.

I have no more information than this, and hesitated whether to post, but maybe someone else more information about Professor Huber's talk. Is this, perhaps, the negative study that Dr Nancy Klimas mentioned?

I have been told this is not something labs ordinarily screen for, they usually only screen for lab contaminants, which WPI does religiously. But if a contaminant is in a reagent, then to screen for that they must run a test in water and if they get a positive they know the reagent is contaminated. Apparently this has happened before, and if Huber said it was a reagent contaminant that is a pretty solid statement, that would be easy for her to prove.

huber used pcr no amplification no activation same old story

Same old complaint, but the Science article also used PCR with no amplification for some of the tests that were positive for XMRV. I doubt Huber's test was faulty, she is a seasoned researcher and would have used positive controls in every batch. Something else is going on.

ok first she could no find it. then she changed technique and could find xmrv and decided that the positive result must have been contamination!!!

I was not at the lecture but doubt this was an arbitrary decision, rather determined experimentally the reagent was contaminated. What this means if it is true is that every research group must now go back and test their reagents for contaminates, or at least those using the same source of reagent as Huber. Perhaps some had contamination and some did not, they just have to run the tests to find out.

huber said hervk18 is upregulated only in those cfs with history of mononucleosis before cfs onset

Did Huber talk about her K18 research much? Or was this just about her XMRV study?

Considering Dr Learner's studies of HHV involvement in CFS, the cytokine profile of CFS which might come from a K18 superantigen, and the fact that low glutathione allows herpes to replicate, maybe someone will connect all of the dots now...

 

[Robin]

I have been told this is not something labs ordinarily screen for, they usually only screen for lab contaminants, which WPI does religiously. But if a contaminant is in a reagent, then to screen for that they must run a test in water and if they get a positive they know the reagent is contaminated. Apparently this has happened before, and if Huber said it was a reagent contaminant that is a pretty solid statement, that would be easy for her to prove.

I was not at the lecture but doubt this was an arbitrary decision, rather determined experimentally the reagent was contaminated. What this means if it is true is that every research group must now go back and test their reagents for contaminates, or at least those using the same source of reagent as Huber. Perhaps some had contamination and some did not, they just have to run the tests to find out.

Aren't they all using different reagents? Wasn't that one of the original issues -- that the follow up studies were using different materials than the Science study?

Without knowing the details or her study, her PCR method, or why she suspects contamination it's tough to tell what happened...

 

[ixchelkali]

Tufts study used qPCR !! same old same old

judy brushed it off in her talk, without naming names. nancy laughed about negative studies, saying they make life more interesting for them. said it took loooong time for HIV consensus, this all can be expected....


oh and btw that tufts study has been rejected for publication TWICE so far.

In the long run, this could be good for us. Once the REAL replication studies are done, once it's been confirmed that there's a link with ME/CFS, then they're going to want a standardized test. All of these failed PCR studies will point out ways that don't work. We don't want to end up like Lyme patients, where the standardized, "official" tests are so inaccurate that they miss a lot of people who have the bacteria. Every one of these "negative" studies, once the real replication studies come in, will help us avoid having chintzy PCR tests as the standard, because it's obvious they don't work.

As long as the research funds keep flowing... Let's hope the prostate cancer connection will help that.

 

[Knackered]

Kurt, how would you explain symptom elevation in those taking antiretrovirals who have tested positive for XMRV (Dr Deckoff-Jones)? How do you explain this statement: "we are really good if we can put antibodies into people" - Dr Judy Mikovitz. How would you explain people receiving negative results? And how would you explain the recent German study?

It's only CCD patients testing positive for XMRV, if there was contamination surely non-CCD patients would be testing positive and at the same rate as CCD patients.

Every time you talk about XMRV it seems you're trying to sway everyone's attention away from it.

 

[MEKoan]

From Facebook:

The first conference news Dr. Mikovits got a standing ovation
Andrea

yipee!

 

[ixchelkali]

I'm really sad for Annette Whittemore & Dan Peterson travelling all the way to the UK and both not being able to present to conference? (I have my suspicions they were warned off, and told to leave).

Somehow, I can't picture Annette Whittemore being "warned off." I don't think she would warn off very easily. She's a tough lady, and a fighter, and she's from Nevada. I don't think she would respond to that kind of tactic.

Unfortunately, that means that I think she's actually "unwell." Goodness knows, she's been keeping up a grueling pace lately; she's probably exhausted.

 

[kurt]

Aren't they all using different reagents? Wasn't that one of the original issues -- that the follow up studies were using different materials than the Science study?

Without knowing the details or her study, her PCR method, or why she suspects contamination it's tough to tell what happened...

Maybe Huber used a commercial reagent in her PCR master mix, if that was contaminated then all bets are off until we know who is using what reagent. But I agree, we need more details. The researchers must know about and manage this risk, hopefully we will hear how they are doing that.

What I am interested to see is studies using the new WPI recommended testing method, that probably will take awhile.

 

[Knackered]

Maybe Huber used a commercial reagent in her PCR master mix, if that was contaminated then all bets are off until we know who is using what reagent. But I agree, we need more details. The researchers must know about and manage this risk, hopefully we will hear how they are doing that.

What I am interested to see is studies using the new WPI recommended testing method, that probably will take awhile.

There's a positive study coming out soon that used the WPI's testing method, Klimas said so in her latest video.

 

[ixchelkali]

Hi jspotila - do you mean the InvestinME Conference, if so the answer is no a DVD will be available soon - well worth it as it is if all the conference.

The conference was really good and Dr. Judy got a standing ovation -it was really fantastic for us in the u.k. to get to hear her speak in person, although poor soul had a realy horrible cold.

I see this is your first post. Welcome to the Phoenix Rising forum, MEisnotforme, and thank you for your post.

 

[kurt]

Kurt, how would you explain symptom elevation in those taking antiretrovirals who have tested positive for XMRV (Dr Deckoff-Jones)? How do you explain this statement: "we are really good if we can put antibodies into people" - Dr Judy Mikovitz. How would you explain people receiving negative results? And how would you explain the recent German study?

It's only CCD patients testing positive for XMRV, if there was contamination surely non-CCD patients would be testing positive and at the same rate as CCD patients.

Every time you talk about XMRV it seems you're trying to sway everyone's attention away from it.

Being skeptical of a hypothesis until it is definitively proven is a part of the scientific process. I am not at all skeptical about ME/CFS or its root in some biological problem. But I have seen so many theories come and go over the years that I have a wait-and-see attitude. There is a lot of water still to go under this bridge, many detailed issues have not even come up yet about the science of XMRV.

The new German study looked very good but not a lot of detail on the methods.

As for the issue of contamination showing up differentially in controls vs treatments, if it is a trace contaminant, then due to how PCR testing works it might show up differentially if different sample volumes are used, or if there are some background differences between the patients and the control samples. Apparently this has happened with reagent contamination before. If you use a certain sample volume the contaminant causes a false positive, and if you use a little more, the contaminant does not due to increased background 'noise' in the sample. And if patients and controls have different 'noise' issues that can account for a selective false positive. I may not have said that exactly right but as I understand this, it is a known risk, particularly for common contaminants like the MuLV family viruses.

 

[kurt]

There's a positive study coming out soon that used the WPI's testing method, Klimas said so in her latest video.

Using their new method? Or the original method from the Science article?

 

[ixchelkali]

It's only CCD patients testing positive for XMRV, if there was contamination surely non-CCD patients would be testing positive and at the same rate as CCD patients.

Knackered, what's a "CCD patient"? (Sorry, I even checked the "abbreviations commonly used on this forum" thread and couldn't find it.)