BWG Phase Two Results - Webinar

Yeah audio is fine for me..

The CDC is finding XMRV in WPI samples, awesome!

Wow the testing is a giant mess, no labs are getting the same results with the same tests at the same sample time.

Yup, they are moving ahead to stage III even though none of the labs or test match. This just makes no sense.

New assays should be quantitative to test viral load!!!!

My understanding is that they had a choice - repeat phase 2 with the very very small sample size or move to phase 3 with larger sample size. Clearly a larger number of subjects is needed since they can't draw conclusions from phase 2.

Editing my post due to slippage.

I was wishing they'd asked how much confidence there could be in a "pedigreed negative" that was a family member of a CFS patient.

I dont want to sound un greatful to the 3 scientists who worked hard on the webinar, but it did have a very negative feeling - the whole presentation.

Im xmrv positive but I now feel very down, I honestly think should of given us a little bit more hope to hold onto over christmas.
We are so, so ill, some times I wonder how are we functioning at all? when we are this ill.


im sorry if im sounding negative but I think they could of showed more compassion for the 17 million sick CFS sufferers who's lives are a living nightmare.

Yes the blood supply is a serious situation but the HUGE suffering of millions and millions of people right now, I felt was not taken into consideration during this talk.

They said they are working as fast as possible but giving the magnitude of suffering, they can't be.

I think this is a good decision. Phase II was designed to find out wheter sample preparation or sample type (whole blood, plasma or PBMCs) make a difference. Since the differences in preparation studied here don't seem to make a difference (don't know about sample type) and they don't know why the tests don't agree they move on to phase III which will be far more interesting. There there will finally be a larger number of positives and negatives and if it's done blinded, that should prove a lab's capability. So there will finally be answers.

I don't think the pedigreed negative used in phase 2 was a family member of a CFS patient. The family member was one of the four pedigreed positives. But my brain is all melty right now. I am anxious to download the slide deck and go over all of it more carefully.

Not meaning to contradict you, i totally respect everyone will probably feel different about things, but i found it very good, especially the non-english-sounding speaker (lol, don't know the name now, probably that one was Busch).
True, phase II didn't bring much, mostly confusion, but now i feel like i know what's going on, i also liked to see the timeline.
Plus the big studies about XMRV in the blood supply, transmission etc. seem very impressive to me. When he showed that, i felt like they are really going about it the way this deserves. I got the feeling they know what has to be done and they are going to do it on a big scale, no more "playing around". Now all they need is for those high throughput assays to become good enough.

If I understood this correctly did they infer that Phase 2b samples were only looked at for two days and all were negative across all labs? Could this have been different if samples had been tested for longer?

LOSING SAMPLES - unbelievable? Do you think Simmons was meant to tell us this?

Also contamination in the WPI lab - did I hear this correctly?

They have a lot of work to do getting an assay sensitive enough to do high throughput and ACCURACY for phase 3!

The 2 day 4 day thing is really confusing. What I understood them to say was that blood was drawn from a subject, and then three different preparations were made. One preparation was done the same day, another after 2 days' storage, and a third after 4 days' storage. They were trying to determine if it was better to prepare samples immediately or along the more standard timeline of 1 to 3 days. The testing timeline was completely different. I hope that helps.

That was a fast-moving presentation for sure. Too much information to catch on the first go-around. Glad there will be a recording available!

Villagelife, what did you think was so disheartening about the presentation? I thought it was very technical and very loaded with information, but that's as expected. This group was not charged with finding treatments or a cure for ME/CFS or even with explaining pathogenesis. Their job is to identify testing methods that can be used to screen the blood supply, not to identify tests that can be used for diagnosis in individual patients. I heard Graham Simmons say right up front that "culture as done by WPI is the gold standard" for detection right now - not meaning that it's perfect yet, but that other methods are not nearly ready for prime time in terms of delivering consistent results. There is a huge side benefit for patients in this intensive study of testing methods, even though it isn't aimed at diagnosing or treating patients.

I don't see that they're giving up, dragging their feet, or going into this with preconceived ideas. If the results at this point are inconsistent, that is completely to be expected.

Leaves, not to distress you here, but false positives are always possible -- no test, CFS or not, is 100% accurate -- not even HIV tests which are pretty close.

A big problem with any commercial test (or even research test) right now is we don't have a gold standard (nearly 100%) method to test tests against. Culture is usually the gold standard for lots of virological/ bacterial diagnoses but we need to know more about XMRV first. This is a large reason why both my CFS specialty docs have held off on recommending testing for now other than if the test is for research purposes.

In terms of the talk, it was pretty dense and I will need to re-review as well. What struck me was the low number of samples used (4!); I thought this might be a function of time and getting all the labs to run them or perhaps getting people who had had multiple positive tests but still, 4 is a very low number to draw conclusions on so I'm not surprised that results were sorta confusing.

There was a potential explanation mentioned for the higher positive results after storage - that maybe infected cells were dying and releasing virus, making it slightly easier to detect. Lots of emphasis on how they are at the limits of detection, where the same patient might test positive or negative on different days. The solution to that is to improve the tests. I think we are looking at the 0/0 studies in the rear view mirror.

there sense of urgency is for the blood supply....not for the 17 million who are to sick to enjoy life and who's christmas will be a living nightmare.

Yeah, I thought this was interesting as well and it wasn't the usual stuff about contamination from mice. It's detailed on one of the slides and I remembered thinking "gee, did someone re-use the same pipette accidentally from one sample to the next?" although that might not be the exact case. Have to look over later.

I hope your christmas will not be like that. True that this is mainly about the blood supply, but nevertheless, if it's "successful" it will help us a lot. It will deifinitely bring on a sense of urgency, should they discover that 10 or 20 millions are infected. And it will hopefully lead to good assays. Also it might lead to the WPI being vindicated. We can gain a lot here.

Eehhh... contamination in the WPI lab?

Is any sequencing going on - the full genone - all 8100 nts?

In addition to being at the limits of detection we have unknown genetic diversity when may be greater than previosly thought. We need to isolate and sequence (completly) more copies of the bugger. The most sensitive test in the world won't work if you're not aiming for the right sequence(s). A (slightly!) larger sample size is a start but phase III aims to look at viral load when we can't reliably find the virus. Is it me (tough, tough day so me brain ain't working) or does this seem bass ackwards?