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

[Rosemary]

CD26 is produced as normal BUT DOES NOT LEAVE THE CELL in CFS. strange but true.

so no cleavage of NPY

Natasa...In autism the suggestion to correct the DPP 1V/CD26 enzyme deficiency is to replace the enzyme by supplementing DPP 1V however as you mention here in CFS it is produced as normal but does not leave the cell so I wonder what this would mean treatment wise for CFS ?

Quote " If DPP IV deficiency results in autism, what can be done? If the enzyme is missing, replacing it should solve the deficiency."

Theories of Potential Therapies for DPP IV Deficiency [Unevaluated]:

http://www.healing-arts.org/children/autism-overview.htm#Dipeptidyl Peptidase Deficiency

Does anyone have any other thoughts on this ?

 

[natasa778]

yes I agree Rosemary, I wonder if that is the enzyme they are using in the current study in Houston that was posted here?

btw Judy mentioned twins with childhood Nieman Picks, childhood alzheimer - as xmrv would be lifting cholesterol off membrane while budding no wonder if it causes diseases of cholestorol defects.

 

[Rosemary]

yes I agree Rosemary, I wonder if that is the enzyme they are using in the current study in Houston that was posted here?

btw Judy mentioned twins with childhood Nieman Picks, childhood alzheimer - as xmrv would be lifting cholesterol off membrane while budding no wonder if it causes diseases of cholestorol defects.

Thanks for the interesting feedback about the twins with NPC

I don't know if CM-AT [info below] which is being used in the Autism trials also contains DPP-1V ?
Some parents I know have actually bought DPP-1V to give to their children , I'm not sure if DPP-1V is sold on its own or in combination with other digestive enzymes ?

CM-AT, an orally ingested powder that delivers protein-digesting protease,

CM-AT is a proprietary enzyme that is designed as a powder taken three times a day.

http://www.clinicaltrials.gov/ct2/sh...uremark&rank=1

 

[Sam Carter]

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

CCD / CCC = Canadian Consensus Definition / Criteria.

 

[Otis]

CCD / CCC = Canadian Consensus Definition / Criteria.

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

 

[Sam Carter]

Me too, Otis! You clearly have quicker fingers and a quicker brain than me!

 

[Otis]

Me too, Otis! You clearly have quicker fingers and a quicker brain than me!

Well insomnia is good for something then.

I am an admin so I was able to edit the first post to keep them all together.

 

[DysautonomiaXMRV]

If CD26 is a 'T cell activation antigen', and it doesn't work - is this one example of how XMRV infects T-Cells?

What is the test for the neuro inflammation in American CFS that Klimas has mentioned in her videos (post XMRV) twice now I wonder? Dr Kerr has mentioned before that brain inflammatory cytokines are elevated, but what are these brain cytokines? (I can't find the paper!!!!).

Some more info on T Cells in other past CFS research involving Kenny De Meirleir quoted below:

T helper 17 (Th17) cells belong to a recently identified subset of T helper cells, with crucial regulatory function in inflammatory and autoimmune processes. Th17 cells are implicated in allergic inflammation, intestinal diseases, central nervous system inflammation, disorders that may all contribute to the pathophysiology of CFS. IL-17F is one of the pro-inflammatory cytokines secreted by Th17 cells. We investigated the association between CFS and the frequency of rs763780, a C/T genetic polymorphism leading to His161Arg substitution in the IL-17F protein. The His161Arg variant (C allele) antagonizes the pro-inflammatory effects of the wild-type IL-17F. A significantly lower frequency of the C allele was observed in the CFS population, suggesting that the His161Arg variant may confer protection against the disease. These results suggest a role of Th17 cells in the pathogenesis of CFS.

Lower frequency of IL-17F sequence variant (His161Arg) in chronic fatigue syndrome patients.
Source: http://www.ncbi.nlm.nih.gov/pubmed/18774769

 

[Countrygirl]

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.



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.



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.

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:

 

[natasa778]

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?

Science grilled them for 6 months to ensure no such thing took place!

also if there was contamination than the control healthy samples would have been contaminated as well, not only cfs ones. they were all mixed, blinded and handled by same labs

 

[natasa778]

Some parents I know have actually bought DPP-1V to give to their children , I'm not sure if DPP-1V is sold on its own or in combination with other digestive enzymes ?

yes it used widely thousands are on it, I believe they are all combos, most popular are houston enzymes http://www.mandimart.co.uk/houston-enzymes-1-c.asp

 

[Otis]

And didn't the fact that they were able to show (minor) genetic diversity in XMRV samples help squash the contamination concern. The idea being that if there were contamination it would be copies of the exact same generic material.

 

[Countrygirl]

And didn't the fact that they were able to show (minor) genetic diversity in XMRV samples help squash the contamination concern. The idea being that if there were contamination it would be copies of the exact same generic material

Natasha and Otis

Thank you very much for your replies. The potential ramifications of the discovery of XMRV and ME are so huge that I keep needing to be re-assured that the initial study really was water-tight. Thank you for re-affirming what I really do already know, but just needed to hear it again.

I think I must be a descendant of the original 'Doubting Thomas.'........... I just need to keep checking....................

 

[leaves]

Hehe nice to have family on the forum

 

[Sam Carter]

.....

I think I must be a descendant of the original 'Doubting Thomas.'...........

That's a pretty good description of the ideal scientist, Countrygirl!

The physicist Richard Feynman described this attitude (ie. one of perpetual "doubt" and self-checking) in his famous commencement address at Caltech.

Wikipedia have a pretty good summary:
http://en.wikipedia.org/wiki/Cargo_cult_science

and, for enthusiasts, and Feynman fans like me, the full address can be found at:
http://calteches.library.caltech.edu/51/2/CargoCult.pdf

For an example of Cargo Cult science one need look no further than the "work" of the UK psychosocial school.

 

[helsbells]

Thanks greatly for that link Natasa778!!

 

[anciendaze]

contamination argument again?

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.

 

[DysautonomiaXMRV]

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.

EXACTLY!!! And the people testing positive at 98% prevalence at WPI aren't healthy, but very disabled with neuro immune disease.
It would be different if the 98% of people are playing basket ball and winning weight lifting competitions, but they aren't.

 

[Bob]

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.

Yes, and the Japanese study found XMRV in a similar percentage of random blood samples taken from the Japanese blood supply (it was around 2 or 3 % - I can't remember the exact figure)... So there's no doubt at all that XMRV is real now... There's so much evidence for it...

Some scientists will continue to find zero XMRV in their studies, as long as they only use the old HIV retro-viral science which they are familiar with, and they don't replicate the Science paper methodology exactly...

And ignorant scientists will continue to blame contamination when they aren't happy with their results... but we've really got beyond the stage of calling XMRV a contaminant now... there's no turning back now... they can't put the XMRV genie back in it's bottle.

 

[Countrygirl]

That's a pretty good description of the ideal scientist, Countrygirl!

The physicist Richard Feynman described this attitude (ie. one of perpetual "doubt" and self-checking) in his famous commencement address at Caltech.

Wikipedia have a pretty good summary:
http://en.wikipedia.org/wiki/Cargo_cult_science

and, for enthusiasts, and Feynman fans like me, the full address can be found at:
http://calteches.library.caltech.edu/51/2/CargoCult.pdf

Thanks for that Sam. I feel a little better now about committing such heresy. Now all I need is a positive result................hopefully my blood will be winging its way over to the US shortly. Keeping everything crossed, and at my age that is no mean feat.

For an example of Cargo Cult science one need look no further than the "work" of the UK psychosocial school.

Thanks for that encouraging post, Sam. I don't feel quite so bad now about committing such heresy. All I need now is a positive XMRV result...........................hopefully my blood will be winging its way over the Atlantic shortly.....................................I'm keeping everything crossed, which is no mean feat at my age.