The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

[Enid]

Thanks Cort and to you all - we are closely following what you able to send us. Byron Hyde has been speaking for years of "missed diagnoses" - one wonders what he does pick up other Docs do not. Could be a good check list for starters for all.

 

[glenp]

Cort has been Tweeting some comments for anyone interested. He can be followed at: https://twitter.com/#!/CortJohnson

Thank you to those reporting from Ottawa, wish I was there.

Thank you Dolphin for posting the twitter link, I just joined and am now following Cort there.

glen

 

[Bob]

Thanks Cort and to you all - we are closely following what you able to send us. Byron Hyde has been speaking for years of "missed diagnoses" - one wonders what he does pick up other Docs do not. Could be a good check list for starters for all.

Yes, I wish he would team up with research scientists, such as the WPI, so they can combine their knowledge, and do joint investigations.

 

[Cort]

Disappointing results from the Blood Working Group.

The BWG sent the 15 samples out to 9 labs. Every lab was able to find XMRV in the spiked sample but only WPI and Ruscetti (using the same test) were able to find it. They were both able to find it using PCR, culture and antibody testing but heres the catch; they found XMRV in equal numbers in ME/CFS and healthy controls, they found it in different samples and when they tended to find it they tended to find it in different samples using different tests; ie the WPI and Ruscetti found it in different samples from each other and the same sample tested positive or negative depending on what test they used. In short it was like throwing darts. It was a blinded study that doomed De Freitas work and in the first blinded study the WPIs test - after two years of work - failed badly.

The WPI and Ruscetti stated the tests only show that the tests need more work and questioned whether the virus had disappeared from their system (aka the macaques)During a discussion Dr. Mikovits stated that some subjects were taking Ampligen and other treatments that could have obscured the test results.

Questions from the audience asked if 15 samples was enough and would Lipkin be better? The speaker answered yes to both. Another questioner asked if the signal strength was too low for some labs to pick up and the answer was that the signals were clear in all tests.

 

[Cort]

DeMeirleir and Antibodies to XMRV

DeMeirleir reported on his antibody test for XMRV. He collected the samples and sent them to the WPI for analysis. He found that 57% of patients tested positive for XMRV and 14% of controls.

The facts remained the same in the abstract and at the conference. In the abstract, though, De Meirleir reported that his findings 'supports the idea that XMRV is involved in the pathogenesis of XMRV'. The abstracts were due in a couple of months ago (July, I believe) and his tone in the conference was a bit different now.

Now he suggested that his results could be due to exogenous virus activation (XMRV) or due to reactivation of endogenous retroviruses... Then he noted that endogenous retrovirus activation has been shown to be triggered by inflammation or herpesvirus activation; ie even if its not XMRV he considers it to be clinically significant.

 

[Cort]

Thanks Cort and to you all - we are closely following what you able to send us. Byron Hyde has been speaking for years of "missed diagnoses" - one wonders what he does pick up other Docs do not. Could be a good check list for starters for all.

Apparently he started off saying he does things different from everybody else. Unfortunately I missed his talk. I did talk with one of his patients who had just started and said it would take a year or so to go through all his tests....If Spect scan is abnormal he thinks you have ME...if no positive SPECT scan - then its something else.

 

[Rita]

Cort, There is a poster from Cheney and Ruggiero about Maf 314 in this conference?

 

[Kati]

Cort, can you talk about attemdance for today? And patient vs dr that are attending? Thx

 

[Enid]

Looking like "none of the usual suspects" - viruses/retros - is exempt yet. Hard going (hope not too much for you).

 

[Cort]

Cort, can you talk about attemdance for today? And patient vs dr that are attending? Thx

Great turnout for the Patient Day yesterday - the room was absolutely full! and excellent turnout today asa well - the room has been 2/3rds to full throughout today. I was talking to a doctor with ME/CFS in the patient relaxation room - she said she was surprised at how many patients are here for a professional conference - much more than in other fields.......Its hard to tell how many patients vs doctors but there are clearly alot of patients here now.

I'm sitting next to a Norwegian journalist, Jorgen Jelstad, who has just written a documentary on ME. (His mother has a bad, bad case of ME...he told me the Rituximab study is done and the results will be in soon.....).

 

[Cort]

Cort, There is a poster from Cheney and Ruggiero about Maf 314 in this conference?

I think there is...haven't been in there yet... I talked to Dr. Baraniuk - he has six posters on his brain proteome validation study. He said it went better than expected and more papers are coming. He also said he applied for six more grants.

 

[Kati]

Cort, we don't know how big the room is... is there 200 people? 300?

 

[eric_s]

I think there is...haven't been in there yet... I talked to Dr. Baraniuk - he has six posters on his brain proteome validation study. He said it went better than expected and more papers are coming. He also said he applied for six more grants.

Now that is good news... thanks

 

[Bob]

Now he suggested that his results could be due to exogenous virus activation (XMRV) or due to reactivation of endogenous retroviruses... Then he noted that endogenous retrovirus activation has been shown to be triggered by inflammation or herpesvirus activation; ie even if its not XMRV he considers it to be clinically significant.

That's the most interesting thing about all of this... Even if XMRV is not implicated, then these results, and Lo's results, and Mikovit's results do seem to be significant in some way. But that's only as long as they are treating their patient and control samples in the same way, which we can't be sure of.

 

[Bob]

I talked to Dr. Baraniuk - he has six posters on his brain proteome validation study. He said it went better than expected and more papers are coming. He also said he applied for six more grants.

I like the sound of that!

 

[Boule de feu]

It is a big room with two huge screens at the front (on each side) and a table in the centre that sits about 15 persons + a front podium (for the main speaker). I have a very difficult time estimating how many we were yesterday but I would say about 250? As Cort said, it was a very full house yesterday.

 

[Kati]

Thank you Boule de feu! Glad you managed to attend!

 

[Cort]

Cort, we don't know how big the room is... is there 200 people? 300?

This is a pretty big room....I'd guess off the top of my head 3-400 people - a nice showing.

 

[Cort]

CDC/NIH and Researchers join hands to create big database

The last presentation, which I missed part of was intriguing...It sprang out of the NIH Workshop on ME/CFS six months or so go and apparently Dennis Mangan was instrumental in getting it together. Its an all volunteer effort involving the CDC and NIH (never would have happened when Reeves and Hanna) were in charge and CFS researchers and physicians to build a central data storage center for all studies and eventuallly all physicians. Once it is built researchers will be able to tease patterns out of reams of data. THink of having all Dr. Petersons or Dr. Klimas data in there and being able to search it for low NK levels and then assess what kinds of patients have them, what treatments work for them, etc...

Dr. Klimas said we've been talking about this for 25 years. The important thing is that its got the backing of the NIH and the CDC. The CDC, by the way, said their Wichita data will be in a public database in October.

They are just getting started but they are serious about this.....and it sounds like it will happen. Many other disorders have done this. They'll start off with research studies and then move to physicians. It wasnit surprising to see Dr. Klimas lead the session - shes very excited about this - you could see her eyes light up when she talked about it.

 

[Cort]

Interesting, but in a way also disappointing, i expected a "real" positive study. Any word about blinding? Was this done blind?

I assume that it was...theyre all being very careful now, but I dont know for sure.