Dr Vernon's webinar Thursday 18th at 2 pm EST

[Lily]

(grins)Looks fine on mine

 

[gracenote]

90 more minutes.

Some of the chatter . . .

"You guys are early." "We're practicing." "No recording on previews."

My favorite . . .

"I love my little people."



(speaking of the people in one of the charts)

 

[garcia]

Kim, Yes, it's interesting isn't it! Great slides. I think it is going to be a good presentation, judging by the rehersal.

Ah! Someone has just managed to tell them that we can hear! Phew!

That was me! Managed to give them some help in the set-up. Anyway they've logged off now. Look like we are good to go.

 

[gracenote]

Now I've been told the Webinar has ended and they want my feedback. Will I have to sign in again?

 

[Advocate]

No worries....I just made off with all of Anne's forks!

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I think the second fork from the right is Chantilly pattern by Gorham. I'll take that one.

 

[George]

Hey guys when it comes on will you all keep the rest of us posted? I can do phone or internet but not both. (sad dog eyes)

 

[_Kim_]

That was me! Managed to give them some help in the set-up. Anyway they've logged off now. Look like we are good to go.

Oooh, now I know your name

 

[Robin]

I think the second fork from the right is Chantilly pattern by Gorham. I'll take that one.

Haha, if another negative study comes out, I'll need one too!

 

[Sasha]

Yurgh, the webinar won't load for me - I registered and everything but the programme loading process just goes round in circles. Why can't they just show these things in a simple way without registering and having to download programmes and everything?!!

I'll just have to hope they repost it somewhere where you can just click a button and watch it...

 

[Robin]

Right now Dr. Vernon is going over research projectsfunded specifically for biomakers. Dr. Kathleen Light is studying blood cell ion channel indicators (ATP and lactic acid receptors) as indicators in fatigue and pain. They're studying CFS, MS, healthy controls.

Samples are taken before, 30 minutes after, 8, 24, and 36 hours after exercise. The (sensory, andrenergic and immune) markers in CFS patients stay upregulated up to 48 hours after exercise while the controls are much less dramatic.

Only 20 patients have been tested. A final analysis should be available within the year. It's a very promising biomarker for CFS.

More about this research here: http://www.cfids.org/cfidslink/2009/080503.asp

 

[Robin]

Dr. Vernon continues...

Dr. Gordon Broderick, a chemical engineer who is now in med school, is studying cytokines and hormone response in patients who go from EBV infection to CFS.

He's using a mathematical model to show a chronic inflammatory reponse. It looks like this. HC is healthy control, CFS is sick patient. There is rich potential for biomarkers here.

 

[Robin]

Is anyone else having problems getting in? Does anyone want these little updates?

 

[Sasha]

Is anyone else having problems getting in? Does anyone want these little updates?

Thanks Robin, these are great - but don't interrupt your watching of the seminar just for me, I'm sure it will get posted up somewhere in full eventually!

 

[calzy]

O, yes thank you Robin!!

Is anyone else having problems getting in? Does anyone want these little updates?

 

[Robin]

Thanks Robin, these are great - but don't interrupt your watching of the seminar just for me, I'm sure it will get posted up somewhere in full eventually!

Haha OK, Sasha. It's no problem, I type fast. But they should have it available later. They did have technical problems of during the last webinar so it couldn't be viewed in full later, but the slides are available at least. So they should make these available too.

ETA: Oh, Ok I'll keep going, Calzy!

They're studying POTs, I missed the big slide but they're studying things like arterial pressure in different parts of the body, blood flow, brain flow, etc. It's much more erratic and exudes less pressure during tilt. Clear indicators that CFS differs from healthy controls in blood flow -- another potential set of biomarkers.

 

[Robin]

Dikoma Shung is studying brain blood flow and metabolism using imaging.

He uses proton MRI -- which studies metabolites in blood and how brain is using them. Tells about brain activity in chemical way. Comparing CFS to depression and anxiety disorder compared to healthy controls. The images are correlated with clinical observation.

Lactate in ventricular space in CFS brains has a significant and different levels between healthy, CFS and anxiety.

(Yellow is CFS). Oxidative state is bad in CFS. (she said a lot more but I missed it.) They're looking at chemicals in blood, mitochondria, and CNS abnormalities. They're integrating types of information from different disciplines to indentify biomarkers.

 

[Robin]

Sanjay Shukla (?) is studying microbiota in CFS to see if we have more microbes than healthies. They're looking in the gut to see if microbrial community is altered using following an exercise challenge. They're looking for leaky gut -- are microbes leaking into body to cause active inflammation? Study is just starting to enroll patients. Blood samples will also be tested for inflammatory markers and XMRV!

 

[Robin]

A database library/knowledge base of all pertinant data in various journals about CFS will be created so that queries can be made. This useful because it can help find specific types of patterns. Networks of related information from past and previous research can be used to figure linking features! (IT could help identify a pathway or pathogen...)

 

[Katie]

Robin, you are a star for doing these updates, thank you!

 

[Robin]

CFIDS association is trying very hard to get researchers to work together and coordinate. They want to expedite the process of research "from bench to bedside". Kim says the network will harness the power of scientific consensus to accelerate improved diagnostics and treatments. (Kim sounds like she could be on NPR. ;-) Dr. Vernon says the collaborative effort has not affected any researchers sense of competition - she feels it has "enriched their competitive edge". Researches overwhelmingly was expansion of networking.

In conclusion, Dr. Vernon would like to shorten time between diagnosis and treatment! Biomarkers relevant to subgroups need to be identified so interventions can be targeted. The disease is not heterogeneous and needs refinement clinically.

Biobank - "solve CFS" biobank. CAA is developing bank of samples collect from patient community. They want to characterize the samples extremely well with clinical information. Will be stored in secure bank which can allow researchers advantage of well defined cohort. This will help save time, too.