Lipkin bad news folks

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Sasha

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pollycbr125 said:
got to be the worst press coverage of the day ! http://hanlonblog.dailymail.co.uk/2...t-that-does-not-mean-that-it-is-not-real.html

this is the shite we have to put up with in the UK . It may as well be the 1980's
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Holy sh...

I just emailed the editor of the Mail and emailed the MEA to ask them to act. What an appalling piece of crap. Shame on that man (I can't call him a journalist). How the Mail shames itself with this.

On the plus side, the psych lobby must be scared...

Thanks for posting, Polly.
 
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Christopher said:
But it will be the article with the most hits, I bet. That's the goal there
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So let's email the editor and complain, on the facts - that ruling out XMRV doesn't rule out all viruses, obviously, and that, contrary to his statement that "Now scientists are looking at psychological, genetic or autoimmune mechanisms to explain the disease", Lipkin ruled out a psychological explanation and is looking now at other viruses.

He's just plain wrong and it's easy to show it. Don't bother posting comments on his blog (though I couldn't help myself and doubt my comment will make it past moderation) - complain to the editor. It's bad journalism.
 
Daffodil

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yea why does the UK suck so much? it's like the health authorities there have some kind of personal vendetta against CFS patients
 
August59

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Daffodil said:
personally, i didnt care too much for most of the questions. i would have liked to see more about the studies going forward, maybe about the limits of sequencing and possibility of recombinant viruses.

i liked lipkin. the fact that he admitted they found some unexplained antibody acitivity in a few samples, shows he is probably objective.
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I read an article awhile back in Discover Magazine, which had an article about Dr. Lipkin. He is a very curious man in that if something is following the normal path then he is going to find out why. He is definitely not bound to humans in his studies either. He has studied many of other mammal, reptile and insect dieases and viruses.

I got the impression he is very happy in his present position as being the "go to" guy when discrepancies arise. If he moved up any higher would not be able to get hands on in as much as he would like. Also, got the impression that his superiors do not want him going anywhere if at all possible. They like him just the way he is because when they get ask question that they have no answer to. It's to him that they seek an answer to save their butts and he usually does.

I really hope he takes an interest in CFS and is able to partipate in more studies and hopefully lead some more studies.

He is definitely a good man!
 
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August59 said:
I read an article awhile back in Discover Magazine, which had an article about Dr. Lipkin. He is a very curious man in that if something is following the normal path then he is going to find out why. He is definitely not bound to humans in his studies either. He has studied many of other mammal, reptile and insect dieases and viruses.

I got the impression he is very happy in his present position as being the "go to" guy when discrepancies arise. If he moved up any higher would not be able to get hands on in as much as he would like. Also, got the impression that his superiors do not want him going anywhere if at all possible. They like him just the way he is because when they get ask question that they have no answer to. It's to him that they seek an answer to save their butts and he usually does.

I really hope he takes an interest in CFS and is able to partipate in more studies and hopefully lead some more studies.

He is definitely a good man!
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paddygirl

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One positive about the dire early media coverage (actually the only positive) is that people like Lipkin will see how totally misrepresented we have been in the media and therefore the public conciousness (sp) . How frustrating for him and the others to see their their carefully crafted work so twisted and polluted.

I have to say we would not be at this point without Judy Mikovits and her undoubted courage and integrity. I'm thinking of her today.
 
snowathlete

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These headlines are depressing, and though they will cause some in the public and even services to shun us even more than they already do, the good thing is that Lipkin and others are already involved and commited to finding the cause of the illness. So, its important that we remember that and dont get too discouraged...hard i know, but still true.
 
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snowathlete said:
These headlines are depressing, and though they will cause some in the public and even services to shun us even more than they already do, the good thing is that Lipkin and others are already involved and commited to finding the cause of the illness. So, its important that we remember that and dont get too discouraged...hard i know, but still true.
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Irritating as that ridiculous blog post on the Mail is, we must remember that out of 60 million people in the UK, about two blokes and their dog are going to read it. And even their dog will realise that it's ludicrous to say that because a single virus has been ruled out as a cause, a disease must be a mental illness.
 
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currer

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Can someone send that disgusting Mail article to Lipkin then? Ask Lipkin to respond.
I am serious.
I'd do it but I have no IT skills.

It might interest him to see how his science is distorted for political and personal ends in the UK.

It is not our responsibility to fight this - we are patients.
Medicine should be responsible for policing itself to stop this psychopathic abuse of patients.

This debate should go on between professionals of equal standing.
The psychiatrists ought to be responded to by their scientific peers.- they would be more difficult to bully and abuse with impunity.
 
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user9876

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currer said:
Can someone send that disgusting Mail article to Lipkin then? Ask Lipkin to respond.
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I added a comment but they are moderated by the author so I don't expect to see any critical comments appear.

The author describes himself as "Michael is Britain’s sharpest and most well-read newspaper science journalist."
 
heapsreal

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only half way through the video but interesting how they are saying we are sick, immunological findings are leading them to that but they just cant pin point a cause. I hope this encourages other researchers to keep looking into this for us.

cheers!!!
 
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..


New post by Dr Michael Snyderman on Dr Jamie Deckoff Jones blog.


Called....We Must Move Foward

http://www.x-rx.net/blog/


This from Dr Snydermans new post!

Quote
The quest for identifying and treating retroviruses that are involved in the pathogenesis or CFS/ME, neuroimmune, autoimmune and neoplastic disorders will not end today despite the negative results of the XMRV, pMLV study. I have CFS/ME and cancer. My data supports the presence and importance of retroviruses in the pathogenesis of both disorders and the potential for anti-retroviral drugs to help us.
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biophile

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I have not had a chance to examine the paper much or view the conference, but I get a good impression from other people's comments so far. It confirms some of my pre-release suspicious about it all; the findings were null but there was emphasis on the seriousness of ME/CFS and other biomedical projects underway.

ME is probably a mental illness after all - but that does not mean that it is not real

18 September 2012 7:27 PM
Michael Hanlon's Science blog

http://hanlonblog.dailymail.co.uk/2...t-that-does-not-mean-that-it-is-not-real.html
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I agree that Michael Hanlon's Science blog is the worst coverage yet (AFAIK), but it was only a matter of time. I even saved a copy for future reference, and just in case it changes ...

The 1st paragraph is inflammatory. The alluded connection between the 2nd and 3rd paragraph does not make sense. The rest of the article gives an inflated sense of how common the "abuse" is, although at the end suggests it may only be a handful of people. He seems to conflate the XMRV/pMLV hypothesis with a general "virus hypothesis", and seems to misrepresent or water-down Shepherd's position on ME/CFS: "Shepherd has been vocal in his support for the view that ME may not be a purely psychiatric condition."

Out comes the [fear of the stigma surrounding mental illness] explanation again, and portrayal of the PACE/CBT/GET critics as negative campaigners and worse than anti-vaccinators. Then, "Something about this disease seems to cause a suspension of reason." Yes, apparently for the writers of articles and blogs too! "There is a deep mystery here and one is forced to suspect that there is more to all this than meets the eye." Oh the irony! Things are not always as they appear, keep digging and you soon fall down the rabbit hole with the rest of us.

"Perhaps now the final nail in the coffin of the virus theory appears to have been driven home, we will find out once and for all the true story behind the ME fanatics." All the claims in various articles about "the virus theory has been debunked once and for all" will look rather stupid if Lipkin's pathogen study finds something significant.

I do not expect reporters to understand the science and politics of ME/CFS straight away, I did not either at first, but I expect curiosity for different sides of the argument and the avoidance of inaccurate conflation. Keep in mind that Daily Mail excels as a gossip magazine and has rarely shown much understanding or insight about ME/CFS.
 
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