Maldarelli XMRV Study Underway

[Cort]

Gerwyn posted this at ME/CFS Forums. Judy Mikovits wanted it to be known about the Malderalli study:

Quote

"She informed me that neither the WPI or the others mentioned [Drs Ruscetti and Lo/Atler] are involved in any way.

She also informed me that the retesting of XMRV positive people is set to take place in John Coffin' s laboratory and that Dr. Malderalli works for John Coffin.

She asked me to make the contents of our communication known and she is willing to answer individual e-mails from people who are still in doubt about the above."

Is she saying that John Coffin cannot be trusted? I assume that is the implication?

 

[Roy S]

Is she saying that John Coffin cannot be trusted? I assume that is the implication?

No, as I understood it the issue was the conflicting statements about the collaborations.

 

[Cort]

Thanks...I like that interpretation much better

 

[eric_s]

But to be honest, it casts some doubt about how John Coffin works, if the work is set to take place in his lab and Maldarelli works for him and we get that kind of information that we have.
I would like to be able to think Coffin is only doing good things for us, but at this moment i need some explanations to be convinced.

 

[Roy S]

This is from January 11

PERMISSION TO REPOST OBTAINED

The WPI will not recommend any XMRV positive patient participate in any study that uses the IAP assay ..it is not validated..never has been.

 

[Cort]

But to be honest, it casts some doubt about how John Coffin works, if the work is set to take place in his lab and Maldarelli works for him and we get that kind of information that we have.
I would like to be able to think Coffin is only doing good things for us, but at this moment i need some explanations to be convinced.

Malderelli may want to take advantage of Coffin's lab. Coffin, is after all, a very highly respected researcher. He has also developed assays that he believes can differentiate XMRV from non-XMRV sequences...He's deep into this....

We very clearly have a very strong difference of opinion regarding the IAP test. It would be great if Coffin or Malderelli would address Dr. Mikovits's concerns. She stated earlier what those were and pointed out the papers that raised those concerns - that's all she can do.. The ball is really in their court. Let's hear a response from them.

 

[eric_s]

Malderelli may want to take advantage of Coffin's lab. Coffin, is after all, a very highly respected researcher. He has also developed assays that he believes can differentiate XMRV from non-XMRV sequences...He's deep into this....

We very clearly have a very strong difference of opinion regarding the IAP test. It would be great if Coffin or Malderelli would address Dr. Mikovits's concerns. She stated earlier what those were and pointed out the papers that raised those concerns.. The ball is in their court.

Yes, i agree about the IAP test.

If Maldarelli really works for Coffin, then i don't see how he would be in a position to take advantage of Coffin's lab. But i don't know about the internal organisation at the NCI and NIH and who holds what position.

I think we need answers and as far as i'm concerned, i'm still waiting. Something has happened that is not how things are supposed to work (advertising for a study providing false information). We can only know who is to blame (Coffin or others) after knowing who did what and why.

 

[eric_s]

Somebody has told me that he has heard from Judy Mikovits that they are now part of that study. That's good news. I still don't understand why Dr. Maldarelli seems to have just assumed they will participate without asking them first, or whatever happened, but it looks as if things have now been settled. It would have been nice, if the CAA or another organisation could have found out for us what was going on there and would have told us, without us having to wait for so long without answers.

 

[Navid]

Somebody has told me that he has heard from Judy Mikovits that they are now part of that study. That's good news. I still don't understand why Dr. Maldarelli seems to have just assumed they will participate without asking them first, or whatever happened, but it looks as if things have now been settled. It would have been nice, if the CAA or another organisation could have found out for us what was going on there and would have told us, without us having to wait for so long without answers.

eric s

thanks for sharing what you heard. greatly appreciated.

however, we as patients should be learning about these things officially from the sources rather than thru the grapevine on the internet (3rd hand news in this instance). if malderelli is in fact doing a study supported (idealogically by WPI) is there not an official channel for patients to learn about this. if there is not, there needs to be one created. otherwise our community continues to run around confused by rumour and inuendo.

thanks again eric for providing us with some info : )

 

[Esther12]

Nice to know we're heading towards a happy ending for this little trauma. thanks eric.

 

[Cort]

Somebody has told me that he has heard from Judy Mikovits that they are now part of that study. That's good news. I still don't understand why Dr. Maldarelli seems to have just assumed they will participate without asking them first, or whatever happened, but it looks as if things have now been settled. It would have been nice, if the CAA or another organisation could have found out for us what was going on there and would have told us, without us having to wait for so long without answers.

That's good news. I don't that its true that Maldarelli just assumed that. That is not what I was told but it may be that not all parties were in complete communication and the lines got crossed or he assumed too much or whatever but the best thing is that they are moving forward. As I noted with the Dusty Miller study I was informed that they too were able to come to an agreement (although I don't think the study is going forward).

I want to hear some official confirmation of this. If this is true then lets have someone - Maldarelli, the WPI or the CAA confirm it. I would think it would be the WPI or Maldarelli since the CAA isn't part of the study - they were just informing people about it -at least that was my impression.

 

[Cort]

Nice to know we're heading towards a happy ending for this little trauma. thanks eric.

I swear that made me laugh - this latest little trauma...so true....oh my....

 

[eric_s]

Yes, i also wish there would be better communication and information. I think in this case a CFS organisation should have found out what's going on and informed the community. The WPI is a research institute (and clinic soon), it's not their primary job to do these things.

I think it's very important to try to establish the best possible ways for communication and also to mobilize people for actions.

Important information should reach the entire community (oganisations and individual PWCs) as quickly as possible.
And we should be able to mobilize a big number of people in any place in a reasonable time.
Like for example with the PACE trial study. The CAA should have been prepared and ready to deliver good information to counter it. Better communication between the UK orgs and the CAA might have helped.
Now let's say there would be a demonstration, letter campaign or whatever to react to this situation. We should be able to put a couple of thousands of people in front of the BBC headquarters, seat of parliament or government or such a place within say one week or so. Or deliver 50'000 letters, in a country of the UKs size.

We should try to build up structures that allow us to do these things.

 

[eric_s]

I don't that its true that Maldarelli just assumed that. That is not what I was told but it may be that not all parties were in complete communication and the lines got crossed or he assumed too much or whatever but the best thing is that they are moving forward.

Can you share with us what you were told? I understand you might not be able to.

 

[Cort]

Yes, i also wish there would be better communication and information. I think in this case a CFS organisation should have found out what's going on and informed the community. The WPI is a research institute (and clinic soon), it's not their primary job to do these things.

I think it's very important to try to establish the best possible ways for communication and also to mobilize people for actions.

Important information should reach the entire community (oganisations and individual PWCs) as quickly as possible.
And we should be able to mobilize a big number of people in any place in a reasonable time.
Like for example with the PACE trial study. The CAA should have been prepared and ready to deliver good information to counter it. Better communication between the UK orgs and the CAA might have helped.
Now let's say there would be a demonstration, letter campaign or whatever to react to this situation. We should be able to put a couple of thousands of people in front of the BBC headquarters, seat of parliament or government or such a place within say one week or so. Or deliver 50'000 letters, in a country of the UKs size.

We should try to build up structures that allow us to do these things.

I actually think the WPI are the logical ones to announce since they were the ones that encouraged people not to participate in teh study and said they were not collaborating with Maldarelli. Its make sense to me that they would say something. Since the CAA gotten bitten so badly, though, they have a big stake in this as well and I would expect them to announce something as well. Everybody wins by announcing it - if it has occurred....so where is everybody??? or has it not occurred? Honestly I don't know if anybody has good outreach right now.
'
I agree we need far more effective structures for rapid reaction. The CAA acted 'fairly' quickly - I think the problem is that many people were not taken with their response. We absolutely do need structures that an help to enhance a community response to these topics; essentially that turn the community into an effective advocacy tool.

That would take some building and some money. Addresses to send emails too, identifying local people in the community - rallying them....identifying spots to travel too - for a wide range of subjects....

 

[asleep]

For those who may have missed it, here is an excerpt from Hillary Johnson's most recent blog post:

"Statistically, how many patients do we need to recruit to prove them XMRV negative? a comment reportedly made during a meeting to discuss the design of an XMRV trial at NIAID. Maybe youve heard about that study? The one where patients must pay their way to Bethesda?

Johnson admits she got this information second-hand and it may therefore not be entirely accurate. However, it this is true, it very likely refers to this Maldarelli study and gives startling insight into its true goals and motivations: to prove ME/CFS patients (who previously tested positive) XMRV negative.

 

[eric_s]

I think the WPI have certainly considered everything before deciding wheter they want to participate or not. So i trust them to have made sure everything will go well. I hope i'm right.