BWG Phase Two Results - Webinar

[Otis]

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.

This is consistent with my recollection of what Val had reported. Too fogged to go back and look.

So before we got too excited about contamination at the WPI I think we have a one-off problem not a contaminated lab!

At the slightest sniff of that Coffin and his attack-dog Stoye would have been all over the WPI as a larger question of contamination would tainted much more than just one sample in a sub-phase of this study . There are enough people standing by to scream containation in a crowded theater that I'm pretty sure we can count this as a one-off lab error. One that will hopefully not be repeated through stricter lab protocols.

The following is my opinion with the caveat that I had to drop the webinar after only 30 minutes of audio only.

This whole enterprise needs a cash infusion in a big way. More positives, more controls and very well designed and controlled studies. I'm not seing it. Phase II was poorly constructed and I'm not confident in Phase III.

 

[CBS]

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.

That was my impression.

 

[urbantravels]

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.

I was confused, I guess - all four subject were supposed to be pedigreed positives, right?

 

[urbantravels]

Occasional lab errors do occur, no matter how careful one is. This is extraordinarily hard stuff to do, and some of it is down to a mysterious combination of skills and luck. The way you would compensate for that is having, oh I don't know, a larger number of samples?

 

[CBS]

I was confused, I guess - all four subject were supposed to be pedigreed positives, right?

All four samples in phase 2a were supposed to be pedigree positive. The pedigree negative was added to phase 2b. Not sure where they got the pedigree negative. Hope it wasn't a lab worker, relative, etc.

 

[CBS]

I thought that the possible explanation for the day two and day four plasma samples being more positive than those processed immediately (day zero) was fascinating - "the cells may have burst, releasing viral dRNA into the plasma." I'm pretty sure I got that right.

 

[August59]

Opinions??? - I know they are focused on XMRV, MLV's etc... There have been 2 or 3 times when I think Dr. Mikovits stated that while the healthy controls generally had 6 -8 different viruses (or antibodies) present, but PWC had approximately 30 viruses (or antibodies) present. Are the assays they are developing screening for these co-infections as well?

 

[eric_s]

Opinions??? - I know they are focused on XMRV, MLV's etc... There have been 2 or 3 times when I think Dr. Mikovits stated that while the healthy controls generally had 6 -8 different viruses (or antibodies) present, but PWC had approximately 30 viruses (or antibodies) present. Are the assays they are developing screening for these co-infections as well?

I think they are already able to do that, so i don't think there is a need to develop new assays for those already quite well known viruses. Or did i misunderstand you? If i remember correctly, when one of the guests talked about the high throughput testing system, he said this is routinely being used to screen blood donations for a number of viruses like Hepatitis C, HIV, etc.

 

[jackson]

but PWC had approximately 30 viruses (or antibodies) present. Are the assays they are developing screening for these co-infections as well?

I remember Dr Darryl See doing a study showing patients had an average of 37.5 infections. My question would be if something is setting up the immune system to over produce antibody? For example, possibly a low level of transient reactivation that even happens in healthies could cause an over production of antibody? When we tested a patient with high level of EBV antibodies we couldnt get any indications of actual virus in the blood via PCR or protiens ect..

The one study that was really good in this area was Dr Lerners heart biopsies showing nonlytic, non-permissive EBV but that was a small study and with select patients that had flattening t-waves and inversion right??

 

[Sam Carter]

Webinar slides:

http://cfids.org/webinar/slides-121710.pdf

 

[mojoey]

I remember Dr Darryl See doing a study showing patients had an average of 37.5 infections. My question would be if something is setting up the immune system to over produce antibody? For example, possibly a low level of transient reactivation that even happens in healthies could cause an over production of antibody? When we tested a patient with high level of EBV antibodies we couldnt get any indications of actual virus in the blood via PCR or protiens ect..

The one study that was really good in this area was Dr Lerners heart biopsies showing nonlytic, non-permissive EBV but that was a small study and with select patients that had flattening t-waves and inversion right??

Dr. Peterson also relayed to me that Joe Derisi would commonly find 80+ active infections in CFS patients, and only 1-2 in healthy folks. The "30+" actually seems conservative when you think about how comprehensive the Derisi assay is

 

[pictureofhealth]

I wonder how expensive it would be (for national/private health organisations) to routinely test patients diagnosed with ME/CFS for a list of say a possible 20 suspect viruses/bacteria/parasites incl the usual suspects eg EBV, HHV-6 & other herpes viruses, CMV, toxoplasmosis, Lyme, ?babesia and maybe a few nematodes (fill the gap).

At least then treatment of some the more virulent suspects, if found, might be possible which could lighten the overall immune system burden a little and the patient might not only feel a little better and be more 'active', but their immune system function and health overall might improve.

I'm not sure if its routine worldwide or in the UK to test for these suspects nowadays, or whether this has been precluded by politics. I was lucky and had a few tests - only EBV showed up.

Also, just wondering how many zoonotic (?) viruses/worm infections are transmitted to those of us who have pets or who are routinely around animals (from childhood onwards). The number of patients I hear of who are huge pet lovers that have cats, dogs or rode horses is staggering. I loved my rabbit as a child and constantly cuddled it right up next to my face and got swellings and itchy under my eyelids. God knows what that was - probably some flea bites or a worm parasite. The poor rabbit died from some infestation which affected its lungs, in its very early years and we don't know what it was. Strange that since then I have had a variety of sinus problems, breathing/wheezing/allergies difficulties as a child, meningitis and now ME/CFS.

Obviously yet again, there will be those who have pets who are not getting ME, but that does not mean there is no link here.
As I've mentioned before, sugar is perfectly fine for the majority of the world's population, but lethal for diabetics. There is a reason for this. We can't just say - 'Well sugar is perfectly safe', or 'pets are not transmitting infestations or infections, cos look how many people are fine.' etc - we need to look.

As someone mentioned quite recently on this forum - sorry can't remember who - it would be GREAT to get some vets involved in this research.

 

[Sam Carter]

BWG Phase Two Results: "The Webinar"

3D glasses required.

http://www.youtube.com/solvecfs

 

[Marty]

I think the webinar missed the mark; it should have been given in English. No one, not even the scientists among us, are equipped to understand what these highly specialized virologists are saying. People are taking bits and pieces of words they think they understand and building cases, resulting in lots of misinformation, disappointment, and even anger.

What is needed are English answers to English questions, like what are they doing, why is it taking so long, do they know more than they did, where are they going from here, and what does that mean for me today? It takes a specially skilled person to be able to translate between the scientists and the rest of the world. A better person to have done this webinar would have been Nancy Klimas; making sense of technical topics is her specialty.

 

[Esther12]

I think it's good to have as much detailed information as possible - even if I can't understand it all, we'll be able to get more informed summaries from those who can. Get as much data out as is possible imo.

 

[Marty]

I love the science, too, but with understanding. I think the advocate's job is to push the process forward, and to do that, they have to understand what is going on.

 

[urbantravels]

I agree that a digestion/interpretation would have been useful. But remember this thing was pulled together in a week, in response to us in the community complaining that we're not getting enough information about what's going on. If we'd gotten instead a simplified digest prepared by some third party, I'm pretty sure there would have been a lot of complaining about how we didn't get the full details. Hard lot to please we are.

 

[acer2000]

My concern when watching the BWG results is that people understand the purpose of the BWG. They are given the specific task of figuring out an inexpensive and quick way to screen large amounts of the blood supply accurately. This is primarily to figure out how to protect other people if it turns out XMRV is pathogenic.

That said, I hope the larger research community isn't going to use the results of the BWG as an indication whether to move ahead with funding other CFS/XMRV studies. I hope thats not the case - but it underscores why we really need another independent study to confirm that culture method (or other more invasive/expensive/time consuming) is reliable if the PWG PCRs aren't working out. It will then be much easier for research on the sick to proceed, even while the BWG spins their wheels looking for an inexpensive test to use en masse.

 

[Otis]

I think it's good to have as much detailed information as possible - even if I can't understand it all, we'll be able to get more informed summaries from those who can. Get as much data out as is possible imo.

While I understand Marty's frustration, I'm very grateful to have all the details. I was quite ciritical of the CAA for dumbing down an XMRV webinar and so I'm going to give credit where credit is due and say thanks for all the details.

One comment in general. A major overall goal (if not THE major overall goal) of this exercise is to develop a high-speed test to find XMRV in donated blood. So they are not looking for the "best" test, per se, but one that can be run fast. That rules out the "gold standard" culture tests which takes well over a month on average.

Now I've got study design concerns but am allowing some latitude given the different objectives if this type of testing.

We need to look elsewhere to find out "What do XMRV/MLVs" mean to CFS.

This group is not focused on determining the relationship of XMRV to CFS at all. They're out to protect the blood supply which is one reason translating what this means to patients is hard. As a patient, I'm not letting these results color my opioion

 

[Wonko]

it's obviously just me then

a study is commisioned to understand why several other studies get different results studying "the same thing"
in order to achieve this they use a statistically completely insignificant sample size - 5 people
they then get completely inconsistent results that dont answer the question as to why so many reputable labs get completely inconsistent results

so they are now going to run much larger automated tests to establish prevailence etc when they dont know why all the previous testing is inconsistent - they dont know how to test, or whats important in testing or what determines a false negative or false positive - so they cant interpret or understand any results they will get - it's meaningless

is it just me that thinks the lunatics have taken over the asylum?

IMO they need to redo phase II with a signifcant number of samples and keep attackign the problem until they understand and can answer the question of why different labs get either a 0/0 result or a 70+/4 result

or am I crazy?