Lipkin bad news folks

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anniekim

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Sasha said:
I thought it was great that you emailed him, anniekim - one of us needed to, at least - if you've changed your mind about suggesting that people email him, you could go back and edit your original post on that if you wanted. Not saying you should, it's just that not everyone is aware of that option - I've gone back over this thread and edited some of my hotter-headed statements!. :)
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Thanks Sasha. Did as you suggested and have deleted the bit about e mailing him. As he has replied there is of course no need to e mail him about the Daily Mail piece as he is now aware but thought your idea to delete my original plea was a good idea, as it is true he has important work to do and don't want him to be swamped..
 
Esther12

Esther12

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I think it's probably best to try to avoid e-mailing Lipkin, but if one does it would probably also be worth thanking him for his work - if there are people still committed to XMRV/CFS, I expect they'll be e-mailing him too!
 
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anniekim

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Esther12 said:
I think it's probably best to try to avoid e-mailing Lipkin, but if one does it would probably also be worth thanking him for his work - if there are people still committed to XMRV/CFS, I expect they'll be e-mailing him too!
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I thanked him profusely for his work and continued interest in m.e/cfs :)
 
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user9876

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4,556
Esther12 said:
Better than he deserved B.
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I think its worth making him think and replying and challenging him about the science. He might just take something in. I wouldn't expect him to change his view in this debate but he is responding. Maybe next time he sees a press release he may think more carefully. I suspect he is surprised that he is being challenged on the science by people he described as terrorists.
 
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leela

Senior Member
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3,290
Check out this comment on Hanlon's Blech Blog:
Dear Editor
Your report on Ian Lipkin's New York press conference yesterday is incorrect. He reported that the original research relating XMRV retrovirus to Myalgic Encephalitis or Chronic Fatigue Syndrome was due to contamination. This is confirmed by a journal paper today from Silverstein stating the originating XMRV contamination resulting from the original work on prostate cancer..
The fact that XMRV is not the cause of the disease does not rule out other potential viruses or that the immune system is compromised. You have jumped to a theory that the disease is imaginary, this is unjust .
We at Mount Sinai Medical Center, New York are working on the physical aspect of the disease which has massive crippling disabling effect on hundreds of our patients.
We hope that you correct your reportage of this interesting press conference.
Derek Enlander, M.D, M.R.C.S., L.R.C.P.
New York
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S

Sasha

Fine, thank you
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Good for Dr Enlander - I'm slapping my forehead for not thinking of emailing him - he is of course a Brit, even though he's based in NY.
 
SOC

SOC

Senior Member
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7,849
Esther12 said:
I think it's probably best to try to avoid e-mailing Lipkin, but if one does it would probably also be worth thanking him for his work - if there are people still committed to XMRV/CFS, I expect they'll be e-mailing him too!
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And perhaps if people want to email thanks to Lipkin, they should spread them out over time to avoid swamping his inbox (so many of us are grateful) and to make sure his awareness of our gratitude continues through the coming months and years.
 
SOC

SOC

Senior Member
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anniekim said:
Hanlon had now posted a third post. On balance he believes the literature supports a psychiatric origin for m.e though he says he may be wrong. Grr...
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Sounds like he only reads SMC-filtered layman's summaries. Otherwise, he'd know about the preponderance of physiological data supporting a non-psychiatric cause.
 
S

Sasha

Fine, thank you
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SOC said:
Sounds like he only reads SMC-filtered layman's summaries. Otherwise, he'd know about the preponderance of physiological data supporting a non-psychiatric cause.
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I think there's a whole ton of stuff he hasn't read about ME and unfortunately for us, his position as a science journalist may seem to him to require him to appear authoritative on scientific matters at all costs rather than say, "You're right, I'm sorry, I didn't know what I was talking about." I hope I'm wrong about that - maybe we'll see tomorrow.
 
urbantravels

urbantravels

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There *was* a mention in one of the interviews with Lipkin that on Tuesday his mailbox was full of people saying "You didn't do this, you didn't do that" [i.e. criticizing the study]. So he has been hearing negative comments. I don't think positive emails of appreciation would go amiss in all that. But I don't know if Lipkin's time is best spent in slapping down one s**t-stirring blogger.

Things have gone remarkably well with the press coverage, I think; the only really hateful thing I've seen is that blog. Some of the dopey headlines have even been changed. Most of the US coverage has contained at least some of the counter-narrative that Dr. Lipkin was careful to provide: this is a real and serious disease, we won't stop looking for the cause or abandon the patients, etc.

Nobody has done a story yet on all the other work that's been done since Lombardi was published: Rituximab, cytokines, proteomics, etc. etc. I think that would be an interesting article to see. I wanted to list off some of them but didn't have my brain put together enough to be able to come up with an appropriate list.
 
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taniaaust1

Senior Member
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Sth Australia
user9876 said:
I think its worth making him think and replying and challenging him about the science. He might just take something in. I wouldn't expect him to change his view in this debate but he is responding. Maybe next time he sees a press release he may think more carefully. I suspect he is surprised that he is being challenged on the science by people he described as terrorists.
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He's probably just another victim of all the CBT and GET studies that the Wessely school gets out there, decieved by them like most of the general public is.
Most dont look deep enough to see how actually poor those studies are or deep enough to see all those studies out there pointing out other things which dont tend to get the same publicity.

We need ways to make the media our friends.. we need them looking deeper and seeing what is really out there as far as studies go.. so they stop being so biased. Hopefully he will look into things further.. further enough too see that those psych studies have been hyped up and actually not as good as they have been made to sound.

I was thinking deeply last night about ME/CFS and why do governments like to try to hold that psych view and the more I think about it, the more I think this whole deception thing is planned due to money (with Wessely one of the ones working for them).

Think about it.. ME/CFS is FAR MORE common then MS and if it was being treated seriously, if our symptoms were willingly being treated by all the docs, it would cost governments soooo much money in health care for us as we cant be cured, we would be like ongoing sponges as far as money goes. The burden on our medical systems would be huge if our illness was being taken seriously (by that I mean symptomatic treatment which often isnt happening now, getting disability easier instead of many families being forced into caring for them etc

Right now Govs are saving a lot due to the current false perceptions which are constantly put out there. We all know just how much govs like to save money. Look at what england gov is doing to get people off of disability, it dont care that you are disabled, it just wishes to save money.. so could the false illness perceptions being put out be another money saving thing. Think about this.. it isnt a far fetched thought. Gov Cost effectiveness?.
 
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