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UPDATE: BLOOD WORKING GROUP

liquid sky

Senior Member
Messages
371
That German translation says that only 2 labs found the virus, but in healthy controls. Amazingly, the labs were the 2 labs involved in the original study. Also there were only 14 samples. wasn't there supposed to be 30?
 

Jemal

Senior Member
Messages
1,031
Looks like Science is partially retracting the WPI paper?

http://retractionwatch.wordpress.co...ract-the-xmrv-chronic-fatigue-syndrome-paper/

In our 23 October 2009 Report, Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome (1), two of the coauthors, Silverman and Das Gupta, analyzed DNA samples from chronic fatigue syndrome (CFS) patients and healthy controls. A reexamination by Silverman and Das Gupta of the samples they used shows that some of the CFS peripheral blood mononuclear cell (PBMC) DNA preparations are contaminated with XMRV plasmid DNA (2). The following figures and table were based on the contaminated data: Figure 1, single-round PCR detection of XMRV sequences in CFS PBMC DNA samples; table S1, XMRV sequences previously attributed to CFS patients; and figure S2, the phylogenetic analysis of those sequences. Therefore, we are retracting those figures and table.
 

Jemal

Senior Member
Messages
1,031
This is the BWG paper, embargo just lifted.

Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory StudyMurine leukemia viruses (MLV), including xenotropic-MLV-related virus (XMRV), have been controversially linked to chronic fatigue syndrome (CFS). To explore this issue in greater depth, we compiled coded replicate samples of blood from 15 subjects previously reported to be XMRV/MLV-positive (14 with CFS) and from 15 healthy donors previously determined to be negative for the viruses. These samples were distributed in a blinded fashion to nine laboratories which performed assays designed to detect XMRV/MLV nucleic acid, virus replication, and antibody. Only two laboratories reported evidence of XMRV/MLVs; however, replicate sample results showed disagreement and reactivity was similar among CFS subjects and negative controls. These results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted.

http://www.sciencemag.org/content/early/2011/09/21/science.1213841
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
Cort I agree with Sosumi's comment earlier about the tone of your posts about "big news"......I don't understand your approach in the thread, given how things look to be playing out today.......?
 
Messages
13,774
In a statement, Vincent Lombari of the Whittemore Peterson Institute in Reno, Nev., said that while researchers at the institute will be participating in supporting the partial retraction ...we want to make it very clear that we are continuing the important work of studying retroviruses in association with chronic fatigue syndrome and other similarly complex illnesses.

WPI comment from here: http://www.washingtonpost.com/blogs...-new-research/2011/09/21/gIQAJXSenK_blog.html

Live says it's now live, although no content yet - due to start on the hour?: http://news.sciencemag.org/sciencenow/2011/09/live-chat-chronic-fatigue-syndro.html
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
So, if negative, is Cort gloating when he says "big news?" Big news for most patients here would be a positive BWG result. A negative result would be nothing new. I would hope Cort is responsible enough not to gloat. Or is it a simple case of "I know something you don't know?"
I thought the same in advance, before we have now heard about the results. I thought he sounded a bit excited. While i knew he didn't "believe" in XMRV anymore, i would find it hard to believe he would enjoy news that are hard to take for many people.
 

Nina

Senior Member
Messages
222
I agree with what you've said in the first paragraph and i have been thinking about this a lot, ever since i've heard about the BWG and the Lipkin study. In the case of negative BWG results i will also want to hear the WPI's position. There is nothing keeping them from conducting the experiment you have proposed and in fact i hope they will do that (and we should help them with it), if the BWG results are negative, but they (the WPI) are convinced they are right about HGRVs.

It's a tough question and i think it's probably impossible to know how things would have went if they had had a different form of communicating, etc. Like i've said in another post, if bottom line it has brought more interest, more funding, more recognition, then they have helped us, albeit in a rather special way ;-P

I think so far the CFI has done a very good job, because they seem to have recruited excellent people and have developped a very comprehensive plan. What's still lacking are concrete scientific results, of course, and this is what we need in the end. But just as you can say the WPI has brought a lot of attention to ME/CFS one could say that the CFI has given a very good example and i hope other similar funds or philantropists will follow and other organisations or efforts will copy the seriousness and comprehensiveness of the CFI's approach.

Ah, come on, Eric ;) Of course we don't *know* what would have happened otherwise, but we can take a pretty good guess judging by decades of experience!

I registered on PR because of the Lombardi study. So did hundreds of others. We started connecting with others from around the globe. How many blogs have been started about ME since? How many media pieces have been published? How many researchers now say "I didn't know this disease before, but it's a serious disease that very likely has immune system/viral invovlement"?

This is *all* due to one family with a sick daughter doing what nobody else wanted to do.

If that's not a reason to at least admit they've done a lot of things right I honestly don't know what would be. Let's see how others will deal with their work being subjected to the same amount of scrutiny and politcs!
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
In a statement, Vincent Lombari of the Whittemore Peterson Institute in Reno, Nev., said that while researchers at the institute will be participating in supporting the partial retraction ...we want to make it very clear that we are continuing the important work of studying retroviruses in association with chronic fatigue syndrome and other similarly complex illnesses.

What i would want the WPI to do now is to run a blinded experiment with controls in their own lab. If they can still find a significant difference between cases and controls and reproduce their previous results, i would be willing to cooperate and try to finance another blinded study where only a trusted third party has the codes and without any possibility for the WPI to cheat. But if they fail, i would want my money back...
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Ah, come on, Eric ;) Of course we don't *know* what would have happened otherwise, but we can take a pretty good guess judging by decades of experience!

I registered on PR because of the Lombardi study. So did hundreds of others. We started connecting with others from around the globe. How many blogs have been started about ME since? How many media pieces have been published? How many researchers now say "I didn't know this disease before, but it's a serious disease that very likely has immune system/viral invovlement"?

This is *all* due to one family with a sick daughter doing what nobody else wanted to do.

If that's not a reason to at least admit they've done a lot of things right I honestly don't know what would be. Let's see how others will deal with their work being subjected to the same amount of scrutiny and politcs!
That's true, but there are also many negative points one could list. And do you know the story of the boy that always cried "Wolf!"? We will see, there is no other way than to deal with the current situation anyway. But i want to see another kind of work, honestly.
 

FancyMyBlood

Senior Member
Messages
189
I don't know if anyone if following the chat, but it's online @ Sciencemag.

I found this particular response interesting.

Dr. Michael Busch:
Hello Inger,
If you have CFS/ME you should not donate blood, both for your own health and since it is still possible that there is an infectious cause of yoru disease. There is a lot of current research, stimulated over the past 2 years, searching for additional viruses in samples from CFS/ME patients. These studies invoved very sensitive "deep seqiencing" and "metagenomics" techniques. Until the results of these studies are available I expect there will be continued deferral of patients from blood donations. The risk of sexual transmission is unknow.

Despite the final nail in the coffin, I'm starting to believe XMRV is the best thing ever happened in CFS research.
 

Jemal

Senior Member
Messages
1,031
'Promised' I wouldn't post but as this is strictly factual:

- It is not behind a paywal, but requires (free) registration.

If it's too much energy for anyone that wants to read it, PM me with an email address and I will send it to you.

Ah, thanks RRM. When I saw I had to enter certain data I concluded I would have to draw my wallet.
 

Jemal

Senior Member
Messages
1,031
This is from the Science chat:

The BWG decided not to pursue the previously planned phase IV study for 2 reasons. First the results of the phase III study incated a lack of reliable assays for detection of XMRV and related viruses in clinical samples. Second the American Red Cross has completed a much larger study than the planed phase IV study involved >10,000 blood donors as well as linked donation and hghly transfused recipient samples. That study, which was negative, has been submitted for publication.

So no Phase 4 and another negative study incoming.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
'Promised' I wouldn't post but as this is strictly factual/helpful:

- It is not behind a paywal, but requires (free) registration.

If it's too much energy for anyone that wants to read it, PM me with an email address and I will send it to you.
You really, really want people to read this... Thanks for the offer, but please also consider helping with making progress in solving this disease.

Waiting for comments from the labs involved now, especially Ruscetti, Mikovits and Lo. And then i hope we will hear from Hanson, Bieger, IrsiCaixa, Vip DX and RedLabs at some point. I agree it doesn't look good, but i guess these people and groups are forced to react now and i hope this will bring more clarity.
 

free at last

Senior Member
Messages
697
Just dissapointed, i dont really understand how any of this could of really of happened.

Like Eric says Harvey Alter, with hes reputation. Frank ruscetti, same. How the hell did we end up here like this. Its just a slap in the face, for those that probably deserve it the least. I have to belive, that in some way it was not there fault, its all gone wrong. They had better be right about this or its unforgivable. Being left with a disease that is discredited. is quite frightening. They had Better be right. To all those that belived, as i did. Sorry everyone. its a sad end. I cant think no more its too much
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Let's see.... he's heard it's big news and he's an optimist? That wasn't so hard to figure out.

Not sure what your point here is.

I guess xrayspex is hinting that Cort also knew what the news was, which is most likely. That isn't so hard to figure out. When I read Cort's posts, I knew that the results were going to be bad. There was sufficient orchestration of this event to conclude that most of the 'interested' parties knew about the results. My guess is the CAA knew.
 

Ecoclimber

Senior Member
Messages
1,011
Chronic Fatigue Syndrome Study Deals a Blow to a Viral Theory NEW YORK TIMES By DAVID TULLER Published: September 22, 2011

Dashing the hopes of many people with chronic fatigue syndrome, an eagerly awaited study coordinated by government health agencies has not confirmed a link between the illness and a virus called XMRV or others from the same class of mouse leukemia viruses.

Don't Give Up Hope!​

Yes, it sucks but realize there has been some positive developments in the fact that this illness received an incredible amount of exposure and media attention which resulted in numerous research projects centering on this illness.

1. There is a great deal of ongoing research still being conducted on this illness that many are not aware of.

2. Ian Lipkin is still committed into finding a cause for this illness and stated his belief that it pathogenic in origin.

3. There is also Montoya's huge Stanford Research Study still being conducted on finding a cause and cure for this illness.

4. Many researchers are in the process of identifying bio markers for this illness

5. New funding is moving into this area as evidence by the Hutchins Family Foundation $10 million dollar award.



PS: After exhaustive testing...there was no room for error, Silvermann came to his conclusion as cited above in another post.
 

Jemal

Senior Member
Messages
1,031
Is this the end though? Lipkin will finish his study and that Science hasn't retracted the entire WPI study still stands for something. If I understand the current situation correctly, the WPI have the chance to reinvent XMRV. This is a quote from Dr. Mikovits:

Dr. Mikovits said she agreed that blood-donor screening wasn't necessary but she stood by the theory that there was a retrovirus association with chronic fatigue syndrome, through not necessarily XMRV. "We have to dig in to find the right viruses. We need to keep looking," she said.

(From http://online.wsj.com/article/SB10001424053111904563904576586911675053954.html?mod=googlenews_wsj)

I need to distance myself now and think about this.