Lipkin bad news folks

[pollycbr125]

So I'm guessing the reason for the press conference was to make sure the message to the press was clear and accurate. And the UK press balled it up by jumping the embargo with their misinformation. If I were Lipkin, et al, I'd be really pissed off.

I hope he makes a point of naming and shaming the UK and all papers involved in breaking embargo

 

[ukxmrv]

Not as pissed off as we UK patients will be today if this continues in the same way.......

 

[SOC]

Not as pissed off as we UK patients will be today if this continues in the same way.......

You have my utmost sympathy.

 

[pollycbr125]

im pissed off already and its the calm before the storm

 

[Undisclosed]

I personally have decided not to pay attention to anything until the results of the study have been published in the journal in question.

 

[ukxmrv]

You are lucky to have that choice Kina. If the UK reports are taken up then our media will be full of this spin. It communicates to families and they communicate to us. Imagine a host of aunties and cousins ringing to tell me it's "alright after all" or ringing my Mother when I don't answer the phone. My extended family only really reponds to crap things sadly.

 

[alex3619]

The journal release is today I think.

 

[pollycbr125]

it will be posted here in just over and hour and a half http://mbio.asm.org/

 

[Undisclosed]

You are lucky to have that choice Kina. If the UK reports are taken up then our media will be full of this spin. It communicates to families and they communicate to us. Imagine a host of aunties and cousins ringing to tell me it's "alright after all" or ringing my Mother when I don't answer the phone. My extended family only really reponds to crap things sadly.

My family is clueless about ME/CFS and really I am beyond caring what they think because they are so clueless. It is my personal choice to not get wound up in spin press articles until I see the actual results of the study. Show me the results because I know that journalists just love to make statements based on innuendo etc. My family only responds to crap and I ignore their crap. I want to know the results not what joe journalist has to say because he/she is looking for a by-line.

 

[alex3619]

The only reason to pay attention to the spin is because of the politics. It needs to be countered. Twenty odd years of spin has led to almost no research funding - we get scraps. It has also led to systematic abuse of many thousands of patients by the medical system. So its important, but it has nothing to do with finding treatments or a cure directly.

 

[K2 for Hope]

That's why we come here. We can get info, support, etc. All the things we don't get out "there"...

 

[xrayspex]

If these spins on it hold up and if Lipkin contributed to spin making it seem like NO viruses could be related to CFS/ME (which seems ridiculous since there is accepted evidence of viral involvement with a lot of chronic illnesses and some cancers etc) well, if it looks like same stuff Straus and Fauci been doing for 25 years, this is what I will think: Lipkin made sure Mikovitz on board to add more credibility to demise of viral connection and knew she was going to get slandered by WPI and would be vulnerable so he offered a deal to the xrmv/mlv scientists, that they would go along with this even tho its purpose is to put off the leads for longer of common origin for a lot of health problems and he would then help them save face and thus their careers. If it plays out badly for us, then I will say wow, those UK blokes, who was that one guy at other site, started with a G, gerwin or something, said Ian was the "dediscover", they called it right.

I mean I understand that "xmrv" as such isn't where its at anymore, but the lame suspicious part is if they are tryng to get headlines out there making it sound like no viral connections at all when it should just be contained to explaining the problems with xrmv research

 

[K2 for Hope]

From Simmaron Research via Facebook - I assume the "east" stands for US EST:

"Watch tomorrow morning at 10:30 East for results of the NIH's multicenter study on XMRV in ME/CFS, led by Columbia University's Center for Infection and Immunity."

http://cii.yewda.com/Blog.aspx?LOfRcb

 

[ukxmrv]

Some of the newspaper links appear to be broken now. I'm assuming that "someone" has contacted them about breaking the embargo.

It's not necessarily good news (apart from making them less likely to be seen by my family - phew!) as we already have a foretaste of how it will be treated by some UK papers. Unless that is, the same agency is also telling them off for their bad reporting.

The same links may just be reactivated after the embargo has ended or they will disappear / be rewritten?

 

[taniaaust1]

Is this the paper that at some point Lipkin didnt want to put his name too? or have I dreamed that?

 

[ixchelkali]

The newspapers may lift the conclusions straight off the press release from the SMC. They have done it before. With PACE I found one journalist only read the SMC briefling and didn't read the paper or anything else connected to it. He picked his quotes from the SMC press release and went no further.

Count on it.

 

[K2 for Hope]

The link brings you here to the following info:

Investigators from the multicenter study on CFS/ME and XMRV/pMLV will discuss their findings and future directions.
For attendance at the event, members of the media should RSVP by 9:00AM on Monday, Sept. 17th

 

[Undisclosed]

The only reason to pay attention to the spin is because of the politics. It needs to be countered. Twenty odd years of spin has led to almost no research funding - we get scraps. It has also led to systematic abuse of many thousands of patients by the medical system. So its important, but it has nothing to do with finding treatments or a cure directly.

Alex, I think I may be coming from a different point of view. I took a course in Journalism a few years ago and the major point was you need to find the thing that bothers people the most and cause contention. Basically, release a sexy article that pisses people off and you have done your job effectively form a journalistic point of view. Boring stories don't sell. We do get scraps. It's actually abhorrent and it pisses me off. I guess what I was trying to say was that I will consider the results of the study, I will listen to all points of view when the study is published but I will not consider what some journalist has to say probably based on some comment made somewhere on a blog that turns into a sexy by-line that may bring him two minute of fame.

We do get scraps. Patients are abused. I have been neglected and abused and it is my choice to wait for the results and make my own decisions about what I want to think.

 

[Esther12]

Is this the paper that at some point Lipkin didnt want to put his name too? or have I dreamed that?

That doesn't sound right to me. Something from dream-world I think.

 

[urbantravels]

Although it feels like a futile effort most of the time, I *do* make a fuss about how these things are reported, because I know that the how the media portrays things colors a large portion of the public discourse, whether political decisions made at the highest level or the attitudes we encounter in our day-to-day lives. If we can't convince specific people, we can chip away at the conventional wisdom, bit by bit.

Of course there are days (weeks, months) when I completely despair of that, and just put my head under my wing and watch Netflix and try to think about something else.