Email - Dr Alter

[jspotila]

Sorry jspotila but this is turning into a farce posting little dribs and drabs on facebook is not good enough. We need official statements of substantial length to explain the exact situation as it stands at the moment from all parties involved . This is becoming extremely frustrating for patients and my worry is that this will make some patients relapse badly . Everything is up in the air with nobody really knowing what the hell is going on .

this is not aimed at you personally please do not take it that way , but I am in contact with several patients and there are patients in floods of tears at this moment in time , patients becoming severly depressed , I am seriously concerned that the lack of information it is putting patients at risk.

As I posted in another thread, dribs and drabs is all we're getting right now. My understanding is that we are seeking clarification on the status of the Alter study. I share your concern about the effect of this uncertainty on all of us.

 

[pollycbr125]

I think all we have are little drabs unfortunately.

I think Dr. Alter has very good personal reasons to get out his study. His name is all over the Internet in a not very complimentary way. His peers are surely wondering what's going on. He's apparently withdrawn his paper for publication...for his own sake he needs to be able to verify his work and come up with a positive result. I'm sure that he's sweating bullets right now - no researcher wants to be put in the position where his work is publicly disavowed by his own funder....He has a lot of good reasons to make this right.

Cort a lot of folk are under the impression that this paper is witheld from publication not withdrawn . Are you saying that the paper has been withdrawn totally and if so can we have clarification of this ie via a link or something

 

[Esther12]

Cort a lot of folk are under the impression that this paper is witheld from publication not withdrawn . Are you saying that the paper has been withdrawn totally and if so can we have clarification of this ie via a link or something

The terminology is probably a bit tricky as this is such an unusual situation. If they're running further tests, which they plan to include in the original paper, that sounds like more than just delaying publication. Further clarification would be good though - this is all getting rather confused.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[omerbasket]

I think all we have are little drabs unfortunately.

I think Dr. Alter has very good personal reasons to get out his study. His name is all over the Internet in a not very complimentary way. His peers are surely wondering what's going on. He's apparently withdrawn his paper for publication...for his own sake he needs to be able to verify his work and come up with a positive result. I'm sure that he's sweating bullets right now - no researcher wants to be put in the position where his work is publicly disavowed by his own funder....He has a lot of good reasons to make this right.

The CDC's study is a ridiculous study and any objective person can see that. The CDC found no XMRV in 251 people (patients and controls), and another lab in their study found it in 2 out of 251 (0.797%). That is contradictory to numerous other studies, that found XMRV in 1.7%-6% in the healthy controls, and to the NIH study which reportedly found it in 7% of the healthy controls.
It's not only that the CDC did not use the Canadian Consensus Criteria, as required for a replication study; They used The revised fukuda criteria - AKA Reeves' empirical definition.
They also said that:

Most notably, the Canadian Criteria include multiple abnormal
physical findings such as spatial instability, ataxia, muscle weakness and fasciculation,
restless leg syndrome, and tender lymphadenopathy. The physical findings in persons
meeting the Canadian definition may signal the presence of a neurologic condition
considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et
al. study may represent a clinical subset of patients [11].

They said they didn't have known positive samples for control, but Mindy Kitei reports:

the CDC tested 22 independently confirmed positive controls from different labs, but in the CDCs experiment none of those confirmed 22 was positive. The CDC also tested negative controls and found them all negative as well.

And once again, they didn't even use the technical methods described in the original paper. Instead they used their own unapproved methods which tells us nothing - and actually, to an objective person, tells that if they didn't found XMRV, and their collaborator found it only in such low percentages despite the studies that we now have suggesting that even in the healthy population it exists in much higher percentages, than they just could not find XMRV whenever it's there, and more accurately, most of the times that it's there.

The CDC have a big interest in preventing a proof that ME/CFS is caused by a retrovirus from being accepted, because all the years they treated ME/CFS as a disease that is primarily caused by mental stuff. I don't believe a word from them as long as it's not a word that tells me what is the exact biological cause for ME/CFS.

 

[Mark]

Might one do additional tests as part of a review process, perhaps testing CDC samples and other CFS samples, blinded, and required to reproduce the results?

Even if so, the original results have to be published just as they are now, even if with additions. So why not publish them now and describe those extra tests - how long will they be?

I don't see how to credibly retract. Nobody would believe "oh sorry I made a mistake, it doesn't exist after all...must have been seeing things...". I just hope it's a matter of nailing crucial details and proving the difference between the two tests, and showing why CDC et al don't detect.

 

[Rrrr]

I SENT THIS EMAIL TO ALTER. I THINK IT IS FINE TO SEND HIM EMAILS. SUPPORTIVE ONES ARE BEST.

dr alter,

we, the millions of cfs patients and our families, hope you publish your paper soon. we need resolution to this. as you know, many of us do not trust the cdc, as for 20 yrs they have delegitimized and psychologized our illness, when in fact, it looks like it was a retrovirus all along.

i had a wonderful career, a social life, etc, when i was suddenly hit with this illness. i have been near bedridden/homebound for 20 years. i'd love to finally get some recognition and help from my gov't.

thank you for all your hard work on our behalf. when this paper finally gets published, you will be a hero to millions of us. really.

warmly,
rrrr

 

[glenp]

I think it has gone beyond this. I do not think that Dr Alter will be able to speak out now. He did us a great service in the leak. We have to make sure we do not replay the Dr Freitas study and the syphiliss spread now. Let Dr Alter keep his career -- I think we need to go after the CDC and get them to use the proper testing methods. We need to make sure that no studies are covered up, please post any that you know of.
PLEEZ see that the CDC is not making any comments, NOTHING to reassure us , NOTHING to show that they care AT ALL

glen

 

[omerbasket]

WTF?! Have you now reached a verdict on Alter's study, saying that it won't be published?!
If I don't understand you, please correct me. If I do - where do you take this from?