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

[jackie]

Natasa! Thank you so much for the comment on dr. chia...I wanted to ask about him - but was restraining myself (didn't want to bug anybody!) so glad he did well (I think he really enjoys being with his "comrades"! everone seems to like him, including his patients...as he's so open, down-to-earth and honest) jackie

 

[natasa778]

Natasa, Did you know that Dipeptidyl peptidase IV or DDP-IV, appears to be absent or reduced in autistic children.

yes, thanks

 

[Gerwyn]

Doesn't Huber is the one who works with John Coffin? If SHE didn't find it, it's a bit sad. Didn't Dr. Coffin say that a positive XMRV study is just a matter of time (or something like that)?
Anyway, I just don't buy it that in 228 samples of anyone, even if they were all healthy people, there is not one sample which is positive for XMRV. I mean, we now have, besides from the three studies of prostate cancer cells (which found XMRV in prostate cancer, and in some of them they also checked healthy people and found it to some degree), 2 studies that found XMRV in the blood of healthy people (the WPI study and the unpublished Japanese study which found XMRV in 1.7% of the healthy cohorts they checked) and another study that found it in respiratory secretions - also, in healthy people too. Was there contamination in all of these 3 studies? Was there contamination in all of the studies that found XMRV in prostate cells (I mean, the people who wrote the negative studies about XMRV in prostate cancer could say the same as the people who wrote negative studies about XMRV in ME/CFS... So we're up to 6 contaminated studies in 5 different places, not to mention things like confirmation by other labs that the WPI got before their study was published).
Do you think its likely that Dr. Huber's tests could detect XMRV if it was there (at least most of the times that it is there)? Because to me it seems that the answer is simple: No.

huber used pcr no amplification no activation same old story

 

[Gerwyn]

Omerbasket, there is more: after qPCR was all negative, they decided to look for it "the way the original study did" - but only as far as PCR went.

then something happened she said - I missed that part, hope someone can fill in !!! - but they had 100% positive on that repeat test (with another type PCR, I missed which one) and they then decided they had got contaminated somehow.... sorry no details here, she sort of rushed through that part

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!!!

 

[KnightofZERO]

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!!!

If it was so, does anyone know what made her think the positive result was contamination? It seems kind of strange to jump to that possibility, if that is what happened in her study (first no positives, then many with a different procedure), especially considering the German study that just came out.

 

[Kati]

Can someone update about Annette Whittemore? Dr Peterson? Dr Cheney? Thanks !!!

 

[Greggory Blundell]

Ok, Gerwyn, doesn't that suggest she had a bias? Wouldn't good science mandate a thorough investigation as to the discrepency??

 

[Bob]

Huber also mention her HERV-K18 work. Early days but it looks like EBV or HHV6 is able to turn on HERV-K18, resulting in massive T cell activation. Symptom severity looks to be matching level of expression. Still early days on this.

Thanks V99... This sounds extremely interesting... and possibly highly significant... I haven't come across this work before...
If anyone has a link to this specific study, then I'd be really interested in reading it.

Here's some further info that I've gathered together, in case anyone is interested, as follows...
(Thanks to whoever provided these links - can't remember who it was - I've lost track of this thread a bit!)

There's not much info on this link:
Cutting Edge: Epstein-Barr Virus Transactivates the HERV-K18 Superantigen by Docking to the Human Complement Receptor 2 (CD21) on Primary B Cells
http://www.jimmunol.org/cgi/content/abstract/177/4/2056

but there's some more background info here:
Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

And someone kindly sent me the following links in a PM...

HHV-6A infection induces expression of HERV-K18-encoded superantigen
http://www.journalofclinicalvirology.com/article/S1386-6532(09)00194-2/abstract

Human herpesvirus-6B induces expression of the human endogenous retrovirus K18-encoded superantigen
http://www.journalofclinicalvirology.com/article/S1386-6532(09)00198-X/abstract

 

[natasa778]

Annette didn't feel well and left at lunchtime, didn't present.

Peterson didn't present, was he meant to?

Cheney was all cardiac stuff, very interesting, don't have time now if someone can start notes I can fill in...

enteroviral stuff was excellent, both chapman and chia... will try later

 

[natasa778]

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

 

[Knackered]

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

Have people with a history of mono been testing positive for XMRV in the same way people with a sudden flu like illness have?

 

[vdt33]

Poor Brigette Huber. She's going to join the ranks of those with egg on their faces!! (Now that 4 groups have found XMRV in controls or organ transplant patients.) XMRV is not easy to detect like HIV.

 

[vdt33]

Thanks to everybody who has provided information. And thanks to Gerwyn and many others, I can understand some of it!

 

[V99]

I got the impression Huber was not happy about the result. At least she is looking at ME biomedically, even if her XMRV stuff was off.

 

[_Kim_]

Have people with a history of mono been testing positive for XMRV in the same way people with a sudden flu like illness have?

Knackered, the onset of symptoms varied among the 18 participants who have taken the XMRV+ Survey. From our little sample size, it looks like mono and viral illnesses are the most common onset triggers.

The following contributed to the onset of my illness: (check all that apply)

Mononucleosis 6
Viral illness 6
Bacterial illness 3
Emotional stressors 3
Influenza 3
Chemical exposure 2
Death of a family member 2
Immunization - Hepatitis B 2
Job related stress 2
Prolonged or extreme activity, exercise, or exertion 2
Solvents 2
Blood transfusion 1
Heavy metal toxicity 1
Hormone injections for infertility 1
Immunization - Immunization - Seasonal influenza 1
Immunization - Tetanus immunization 1
Occupational exposure to blood 1
Perimenopause 1
Pregnancy 1
Replacement of mercury amalgam fillings 1
Surgery 1

 

[DysautonomiaXMRV]

basically CD26/DPPIV is impaired, its job is to cleave NPY. if no cleavage, levels high and affect autonomic nervous system

Which would cause Dysautonomia, which just happens to be high in people with the label ME and CFS!
Now we just need to tie in XMRV with these CD26/DDPIV impaired folk and/or show all the XMRV+ ME and CFS people have Dysautonomia and it's established
for the first in Science why people have Dysautonomia. Which would be huge.

 

[natasa778]

few more unsorted bits and pieces

Judy mentioned autism and kids being positive and cfs 50 family study but no details on anything apart from collaborating with jill james on methylation studies, working hypothesis xmrv messes up methylation in developing brain etc through cpg island insertion, leading to what jill already observed years ago, ie methylation messed up in asd.

judy and nancy klimas wham bam boom type of research to blow your socks off!! they both were on fire. respect!

++++++++


2x enteroviral presentations were also great, stuff dr chia was talking about, including pics of GI damage low grade persistant inflammation with EVs present in there ... He is infectious disease doc from california, son sick with CFS

oxymatrine chinese herb - aid 50% of his cfs patients do well on it. now more advanced version called equilibrant (can be ordered equilibranthealth.com), Generally very well tolerated, said start small and build up to be on the safe side.


he talked about healing regression, symptoms getting worse before they get better. Rashes, sweats, shingles... Patients relapse if they stop those herbs or any other antivirals (if do well on them). Must stick long term!!!! Regression usually 2-3 weeks after stopping, most recover to where they were when they restart


+++++

nora chapman is lab researcher, looking into ev mutations in cardiac muscle ... Said how ev tend to recombine after they have mutated/established permanency.

basically if an enterovirus is not cleared after acute infection, it will mutate (lose part of genome) which enables it to take hold establish permanent infection, immune system cannot recognise any more as has made itself look not like a virus ...

I asked her about persistent ev in the gut, she said possible but very under researched. This is very important imo because evs go for CAR receptors (sorry boring nerdy stuff) but basically if there and active they WOULD cause/contribute to increased intestinal permeability through 'eating through' tight junctions.

This is my hypothesis only, she said very likely correct but no research at all, no one even applying. Her area is cardiac muscle. In mice.

but well known ev go to take residence in the pancreas (hence impaired bile and enzyme production????), spleen...

 

[Robin]

Thanks so much, natasa for taking the time to report everything!

 

[bel canto]

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

 

[Bob]

Yes, that's an interesting point, Knackered...

As pure speculation - CFS with a history of mononucleosis could be a subset of ME, which involves HERV causing the symptoms, rather than XMRV.

Except that Kim's post suggests that isn't the case.

Have people with a history of mono been testing positive for XMRV in the same way people with a sudden flu like illness have?