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

[Sasha]

There are plans to open a WPI like centre based at the uni of east anglia!!! IiME is helping to fund &Ian Gibson is involved -all at very early stages.

Wow, that's some news! It will surely be all about the funding - if IiME is "helping" I wonder if that implies other sources are coughing up?

Thanks for telling us, Sproggle!

 

[lululowry]

*pacing*

I have to say that it is so nice to have some news to look forward to!

 

[filfla4]

That's great news! Would love to know more!!!:tongue:

 

[ixchelkali]

Incidentally, anyone who went to the conference and is reading this, we all know you'll be wiped out afterwards - don't let our thirst for knowledge lead you to post before you've had a good rest!

Right, what Sasha said. I'm eagerly awaiting news, but not at the expense of bringing on a crash in our correspondants.

Maybe we could find a computer person to volunteer to set up the videos on their site and attach a donate button to each video. Don't know if it's possible to do one that travels with the video when people post it on other sites, but would imagine it is.

Maybe I'll try corresponding with them again after the conference and run this idea by them.

YouTube has just started a pay-per-view video system, but so far it's just in the USA. Their site says "We look forward to expanding the scope of this offering in the future."
http://www.google.com/support/youtube/bin/answer.py?hl=en&answer=178329
It still might be a way to do some fund-raising for IinME, by setting it up in the US. That's a fairly large patient community.

 

[flybro]

east anglia thta wud be right, i lived there 6/7 years ago, and my daughters just moving down from there LOL.

 

[Sasha]

YouTube has just started a pay-per-view video system, but so far it's just in the USA. Their site says "We look forward to expanding the scope of this offering in the future."
http://www.google.com/support/youtube/bin/answer.py?hl=en&answer=178329
It still might be a way to do some fund-raising for IinME, by setting it up in the US. That's a fairly large patient community.

I think that if they can get the tech help, they could raise a lot more money this way than by selling DVDs and could reach a lot more patients. Win-win if they can do it. Can anyone help them? Wish I didn't have the technological ability of frogspawn.

 

[ixchelkali]

...the technological ability of frogspawn.

LOL!

 

[awol]

There are plans to open a WPI like centre based at the uni of east anglia!!! IiME is helping to fund &Ian Gibson is involved -all at very early stages.

That's fabulous sproggle! Thanks for sharing.

 

[Kate_UK]

My notes from Dr Mikovits talk say

XMRV prefers to integrate into CpG islands
which can change gene expression - hypo methylation, hyper methylation
so might not be able to silence endogenous viruses like HERV K.

 

[Kati]

thanks Kate, keep the notes coming :Retro wink:

 

[awol]

My notes from Dr Mikovits talk say

XMRV prefers to integrate into CpG islands
which can change gene expression - hypo methylation, hyper methylation
so might not be able to silence endogenous viruses like HERV K.

Kate, do you understand what this means? I am sure you are busy listening right now but when you get the chance... TNX!

 

[Kate_UK]

Kate, do you understand what this means?

No, but I've read about those things here, so I wrote it down so I could post it here later!

My notes also say lots of envelope is present and this is onco protein and neuro protein.

Then hormones and inflammation (DHT, cortisol, dexamethsone) increase replication of XMRV.

Hopefully someone else has better notes!

Dr Mikovits was obviously very touched about all the birthday cards.

 

[V99]

A sort of big thing from the conference was Brigette Huber. She found no XMRV in 228 samples.

112 samples from Levine New York
105 from Taylor
11 from HHV6 Foundation

All negative. No idea about controls, I don't think she mentioned them. Again she mentioned contamination. However, I don't think she used the same method as Science paper. Mikovits again said they checked contamination, and there was none. This is still to be published I think

So this must be the negative paper. Also Klimas is still positive about XMRV, and so am I.

 

[DysautonomiaXMRV]

Among all retroviruses analyzed, XMRV has the strongest preference for transcription start sites, CpG islands, DNase-hypersensitive sites, and gene-dense regions; all are features frequently associated with structurally open transcription regulatory regions of a chromosome.

Integration Site Preference of Xenotropic Murine Leukemia Virus-Related Virus, a New Human Retrovirus Associated with Prostate Cancer

Link



Re: Huber failed XMRV.

From a Blog on the net.........


''It is also possible that XMRV may be able to induce transcription of an endogenous virus according to Brigette Huber,a professor of pathology at Tufts University’s Sackler School of Graduate Biomedical Sciences in Boston.She has been studying the presence of an ancient retrovirus,HERV-K18,which is dormant in most people but active in patients with CFS and multiple sclerosis.(29)Epstein Barr virus has already demonstarted that it can do this.(29,30)''


(29): Scientific American article,Retrovirus linked to chronic fatigue syndrom could aid diagnosis,available:http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus [accessed 30 Nov 2009]

(30): Francis C. Hsiao, Miao Lin, Albert Tai, Gang Chen and Brigitte T. Hube ‘ (2006)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 [accessed 30 Nov 2009]

 

[Kate_UK]

Dr Chia said 52% respond to oxymatrine - if they don't respond after three months then they're probably not going to.

Dr Kerr talked about using SNPs to predict subtypes. He had a diagram showing the 8 sybtypes in loose clusters, you could see they were separated.

Dr Klimas said the cytokines were not networking together well in CFS. She had an experiment which involved sticking patients on a bike, and taking their blood at intervals, so that she could see where things started to go wrong first, with the idea of treating those problems, as opposed to treating whichever problems came later on. I think it was all the immune things that started to go wrong first, but I'm not sure of that.

 

[V99]

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.

Hope I got this right. I'm sure some of this has been mentioned before.

 

[natasa778]

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.

 

[Countrygirl]

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 hestitated 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?

 

[natasa778]

I think it was all the immune things that started to go wrong first

no, first genes to get expressed were:

1. "Translation - regulation of initiation" (?CREB NFAT? CpG methylation?)

etc, inflammation further down the line

 

[V99]

Mikovits said "we are really good if we can put antibodies into people"

Huber said her method detects 1 cell in 500,000 cells.