State of Knowledge Agenda is up! It's UP!

[urbantravels]

All star lineup. Almost everyone you'd want to hear from in your wildest dreams. Behold!

https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm

 

[Enid]

What a line up urbantravels - can't wait (hopefully) when/if we may see/hear too. Any possibilities ?

 

[Dolphin]

Looks like there will be many interesting speakers.

However:

11:40 a.m. 12:00 p.m. Mangalathu Rajeevan, Ph.D., Centers for Disease Control and Prevention
Genomic Studies of Chronic Fatigue Syndrome

Most, but not all, of the studies Rajeevan has been involved with are "empiric" criteria studies i.e. complete waste of time:

http://www.ncbi.nlm.nih.gov/pubmed?term=Rajeevan%20%22chronic%20fatigue%22
(The "empiric" criteria studies are all the ones from 2006 on except "Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome.")

At least it's not James Jones (see my .sig).

 

[ixchelkali]

Wow. This is better than we could have hoped for. That's a really good line-up of speakers. And did you notice Francis Collins is going to speak?

Best of all, there's no session on the psychogenesis of chronic fatigue, or some such malarkey.

This looks better than anything we've seen before from the NIH. It makes me hopeful and lifts my spirits. It should actually be worth listening to. Let's hope we get some good press out of it, too.

 

[Sasha]

Thanks for posting, urban - I agree it's a fantastic line-up.

Any idea what we can expect this conference to produce, in terms of concrete outputs? Does it come up with conclusions that lead to a certain amount of funding being earmarked or particular kinds of committees being set up or anything? Or likely political impacts?

 

[urbantravels]

I keep looking at it in amazement.

So far the only major omission I see is anyone from the Stanford group - well, I guess Dr. Montoya is sort of it, and he may have other commitments.

 

[WillowJ]

this is fantastic. Many of our top picks. They're covering infections, which is super: XMRV, EBV, enterovirus... but not HHV-6 and HHV-7 (why not?).

Collins is going to talk on XMRV being an endogenous retrovirus. This is the first I have heard of that. Anyoen have any info?

Natleson going to talk about CFS and FM not always the same, yay. The non-research docs who believe in CFS almost always treat it as a variety of FM. I don't have a problem with saying they're related, but if you stop there you don't get the unique pathologies of ME.

A lot of familiar names, some unfamiliar ones, and where did all these NIH people come from? That is fantastic that we have people from heart, lung, and blood institute and NIAID as panelists.

 

[waiting]

I keep looking at it in amazement. QUOTE]

I agree -- this agenda is packed with key players. How will the government representatives respond in the final summary session (Friday @ 2:30pm)?

 

[WillowJ]

ixchelkali, maybe we should all send it to our local news stations' news tips emails.

urbantravels, yes Stanford is missing. And/or Lerner (similar approach and he's the one that participated in the CCC).

yes, the important question is: what will this produce? but the good part is, the foundation looks really good. what we need most is biomarkers, new definition (and name, ICD code; ME is fine but doctors have to be taught to use it), funding. In that order. And physician education!!!

 

[urbantravels]

Collins is going to talk on XMRV being an endogenous retrovirus. This is the first I have heard of that. Anyoen have any info?

Coffin, not Collins! I wondered about that too, it's about "endogenous ORIGIN" so maybe he's there to represent the contamination/lab creation view.

Suspect we'd have heard more about HHV-6 if Montoya were going to be there, which is a shame, but overall, gift horse, mouth, etc.

Funding FIRST. If I recall correctly from earlier discussions of this conference when it was first announced, the conference is supposed to be a check-in about where research is currently going, and is supposed to lead in some way to identification of funding opportunities.

OK, I dug back and found a quote that Dennis Mangan gave to Cort way back when:

Meetings such as this help to inform NIH funding opporunities and identify gaps in the science. The form of subsequent funding opportunities will depend on the outcomes of the workshop, so I don't know what the results will be at this point.

The other outcome that I devoutly hope for is PRESS COVERAGE. Good press coverage. That explicitly mentions how many different biological abnormalities are being studied in ME/CFS, and that maybe mentions that the NIH did not include ANY psychological research on the agenda, and that highlights the gross inadequacy of the current NIH budget allocations for ME/CFS research.

 

[August59]

I hope Dr. Baraniuk will present the data from his latest CSF - Spinal Fluid study. I have hopes that it will go far towards understanding what processes are taking place and at least may support better treatments for us.

It will be interesting to see what Dr. Coffin presents as well, but I'm not expecting anything earth shattering!

By far the best line up so far! Can't wait!

ETA: Nice to see Dr. Chia here as well. He might pull a rabbit out of his hat??? He has been sort of quite lately.

 

[WillowJ]

Coffin, not Collins! I wondered about that too, it's about "endogenous ORIGIN" so maybe he's there to represent the contamination/lab creation view.

my bad on the name. I don't get how endogenous origin could go with contamination, which is what I thought when I saw Coffin. maybe I'm missing something. But the good news is Alter is a moderator. And Alter cares about science and being fair. Alter is skilled at exposing politics-masquerading-as-science-and-concern-for-patients as the politics that it is. So if Coffin is being dodgy at all, it will become obvious. On the other hand, if there really is something to this endogenous stuff, I'm interested in that.

Suspect we'd have heard more about HHV-6 if Montoya were going to be there, which is a shame, but overall, gift horse, mouth, etc.

right

Funding FIRST. If I recall correctly from earlier discussions of this conference when it was first announced, the conference is supposed to be a check-in about where research is currently going, and is supposed to lead in some way to identification of funding opportunities.

you know my thought was, what good is funding if using bad definitions (esp. Empirical and Oxford, but also the twisted-Fukuda; you do have to first throw out the notion that these studies can be pertient), but you're right, we need funding to get biomarkers further replicated and agreed upon.

I did email my local TV and print news. (Sent them a link to Montoya's recent talk as well.) Hey, I should get the radio, too.

Funding out of this... overall looks promising. There's meat here. Had to be with Klimas and Jason and Schweitzer and the other advocates on board. But wow, yes some omissions and some non-favorite people, but overall, wow. And under the auspices of NIH.

It makes a body hope.

 

[CBS]

you know my thought was, what good is funding if using bad definitions (esp. Empirical and Oxford, but also the twisted-Fukuda; you do have to first throw out the notion that these studies can be pertient), but you're right, we need funding to get biomarkers further replicated and agreed upon. oya's recent talk as well.

I don't think it is coincidence that Komaroff and Jason are the lead off speakers.

 

[SpecialK82]

Look at the time segments - very short, many speakers have 15 or 20 mins. It's hard to imagine how they will keep up with this pace - but it may be a good thing, the speakers will have to dispense with the usual overview/history blah blah blah, and just concentrate on the good stuff.

In case they are counting us - please everyone tune into the conference even if you can't watch it. Let's show them our numbers.

 

[SOC]

Anyone have any clues about this guy or his topic? Have we heard anything from/about him before?

Keith W. Kelley, Ph.D., University of Illinois at Urbana-Champaign
From Systemic Infection to Brain Inflammation

 

[ixchelkali]

I'm wondering about Ron Glaser's "Chronic Fatigue Syndrome and the Pathophysiologyof EBV Infection: Trying to Connect the Dots to Make Sense." The title sounds okay, but his field is psychoneuroimmunology, and it seems like that's kinda been his take at the CFSAC meetings.

Oh, well, I guess we'll know soon enough.

 

[Cort]

I'm really surprised that Francis collins is going to speak and very glad to see a full session on exercise physiology. Very nice!

Glazer is all about EBV infection - and he does tie stress into it...but the infection has to be there first.

 

[WillowJ]

Anyone have any clues about this guy or his topic? Have we heard anything from/about him before?

Keith W. Kelley, Ph.D., University of Illinois at Urbana-Champaign
From Systemic Infection to Brain Inflammation

he appears to be studying viral infections in a pig model, fatty acid metabolism, treatment of hot flashes, and, hmm, psychoneuroimmunology (depression and inflammation/cytokines).

also inflammatory hyperalgesia connected to cAMP . more hyperalgesia, "We propose that chronic inflammation decreases spinal microglial/macrophage GRK2, which prevents silencing of microglia/macrophage activity and thereby contributes to prolonged hyperalgesia", etc.

neuroimmunoloty in autism, oh just a comment, no abstract

more inflammation, more sickness behavior, more depression

http://www.ncbi.nlm.nih.gov/pubmed?term="Kelley KW"[Author]

 

[Dolphin]

I keep looking at it in amazement.

So far the only major omission I see is anyone from the Stanford group - well, I guess Dr. Montoya is sort of it, and he may have other commitments.

I wonder is he the person mentioned in the little section:
"As recently as yesterday morning (Thursday, March 31), <etc.>" at http://www.oslersweb.com/blog.htm?post=782485

 

[WillowJ]

I wonder is he the person mentioned in the little section:
"As recently as yesterday morning (Thursday, March 31), <etc.>" at http://www.oslersweb.com/blog.htm?post=782485

another person that could be is Dr. Martin Pall.

I was trying to find some co-authors in common between Kelley and Grinde, but I haven't managed to.

Grinde B. "Is chronic fatigue syndrome caused by a rare brain infection of a common, normally benign virus?" Med Hypotheses. 2008 Aug;71(2):270-4. Epub 2008 Apr 25. PMID: 18440157