Lipkin bad news folks

i would urge you to email lipkin's assistant instead of lipkin directly. she will forward any concerns: Sb2247@columbia.edu

the man just gave a press conference dont make him regret it!

 

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..

 

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!

 

I thanked him profusely for his work and continued interest in m.e/cfs

 

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.

 

Just responded - need a big lie down now.

 

The study is now reported in the BMJ, but behind a paywall so I can't see it:

http://www.bmj.com/content/345/bmj....mpaign=Feed: bmj/comment (Latest BMJ Comment)

 

Check out this comment on Hanlon's Blech Blog:

 

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.

 

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.

 

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.

 

I'm getting the sense he's got a hard-on from all the attention, so just wanking even harder to keep the
wave of hack-journalistic orgasm coming.

 

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.

 

Probably hasn't had this much attention to his blog in..... well,..... ever.

 

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.

 

Arranging a group card would be an idea too.

 

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?.

 

Sorry if this is already posted, but boy this is an excellent article.

http://poultonblog.dailymail.co.uk/...d-than-multiple-sclerosis.html?forumid=331851

 

RETWEET TO INFINITY!

Wow, what a light in the UK darkness.

 

Amazing! I didn't expect to see anything like this in the media -- especially the UK media -- for many years.