Media Coverage of Dr. Alters NIH paper, post stories here

[akrasia]

The Corriere della Sera article is a translation of David Tuller's article in the NY Times.

 

[Sasha]

I've posted a comment (you have to register, but that's quick). At the moment they have zero comments published but they are pre-moderating.

I praised them for covering the story and pointed out that it's a huge story because it's a retrovirus and probably in the UK blood supply (both aspects not mentioned in their coverage). I called for UK govt funding and protection of the blood supply, and pointed out that the expert commentary on the PNAS paper (in the journal itself) called for immediate "proof of principle" clinical trials of ARV for ME/CFS.

Let's comment and push them to see the real scope of the story beyond what was in the press release! I recommend that we PRAISE THEM for their coverage (we want them to do it again!) and tell them what a big story it is, and why. I also recommend keeping the messages short so that people will read them.

Just went to the Daily Mail article to see if they had published the comment I posted around 1pm. They haven't published any comments at all (must all be awaiting moderation) but they have updated the article: the stuff at the bottom with the quotes from AfME calling for UK govt research is new.

It's promising that they're updating - they're obviously starting to do their own investigating beyond the contents of the press release. I'm pleased to see it.

 

[Rrrr]

this is amazing news, if it is true!!! thanks for posting.

I am confused... the article from Belgium is mentioning an entire new study. This is another Belgian article about it:
http://knack.rnews.be/nl/actualitei...rmoeidheidssyndroom/article-1194803699656.htm

The article mentions that researchers from the Vrije Universiteit Brussel (University in Brussels) together with RED Labs have found the new XMRV virus in the blood of patients from all over Europe. It's a study done by Professor De Meirleir. He is going to present his findings during the NIH workshop 7/8 september. In the article he's also quoted: "It looks like there's going to be an end to the suffering of 17 million CFS/ME patients worldwide" and "Treatment protocols are currently being developed, both in Belgium and abroad." He's also quoted as saying that the footprint that CFS leaves on the immunesystem can be compared to the footprint HIV leaves.
(keep in mind I am not a professional translator

 

[Rrrr]

what a GREAT job the starter of this tread is doing, keeping that list of media articles!

 

[Sasha]

The Independent said they had done an article but it was pulled because there was more important news

If only Tiger Woods hadn't chosen yesterday to announce his divorce!

 

[Rrrr]

the comments on the washington post article are HORRIBLE

Washington Post: Chronic fatigue study points to retrovirus

 

[Sasha]

the comments on the washington post article are HORRIBLE

Washington Post: Chronic fatigue study points to retrovirus

I remember a lot of horrible stuff when the Science study was in the papers online last October. We have to remember that there are plenty of sociopaths on the internet who love nothing more than to try to hurt people at a distance, behind a cloak of anonymity. They probably trawl the net looking for people to upset. Their opinions are worthless. They're not representative.

 

[Wayne]

Yes to World-Wide Panic

I think there's no panic because NIH/FDA/HHS or some governmental group of that ilk is deliberately putting a low-key spin on the info. As emotionally satisfying as it would be for PWCs (me, anyway) to see a little alarm in the general populace , we probably don't really want a world-wide panic.

Hi Sickofcfs, perhaps it's my "Inner Revolutionary" speaking, but I kind of wouldn't mind at least a little bit of world-wide panic. :Retro wink:

 

[Sasha]

Can't remember if anyone provided a link to Bloomberg's coverage of the paper - here it is.

 

[LaurieM]

the comments on the washington post article are HORRIBLE

Washington Post: Chronic fatigue study points to retrovirus

You're right, there are an awful lot of psychologically sick people out there, and it isn't us, it's the idiots that leave comments such as: "Maybe the people are just tired and lazy. I know I feel this way sometimes, especially the older I get." and then get recommended for it. :Retro mad:

 

[Sasha]

Can't remember if anyone provided a link to Bloomberg's coverage of the paper - here it is.

Just read it - interesting that they lead on which companies manufacture the most promising ARVs! That's Bloomberg's for you.

 

[Jemal]

First Dutch article I found:

Reformatorisch Dagblad

 

[Alexia]

I am confused... the article from Belgium is mentioning an entire new study. This is another Belgian article about it:
http://knack.rnews.be/nl/actualitei...rmoeidheidssyndroom/article-1194803699656.htm

The article mentions that researchers from the Vrije Universiteit Brussel (University in Brussels) together with RED Labs have found the new XMRV virus in the blood of patients from all over Europe. It's a study done by Professor De Meirleir. He is going to present his findings during the NIH workshop 7/8 september. In the article he's also quoted: "It looks like there's going to be an end to the suffering of 17 million CFS/ME patients worldwide" and "Treatment protocols are currently being developed, both in Belgium and abroad." He's also quoted as saying that the footprint that CFS leaves on the immunesystem can be compared to the footprint HIV leaves.
(keep in mind I am not a professional translator, but the article is in Dutch and that's my native language, so the translation will not be far off)

Jemal,
I also read it in Dutch and it really seems that there is another study done by De Meirleir... great nieuws ! let's hope he will reveal the results in the September presentation in Belgium.

 

[dannybex]

Not sure if this has been posted yet, from the Sydney Morning Herald:

http://www.smh.com.au/lifestyle/wel...-sufferers-seeking-a-cure-20100824-13qgb.html

 

[SOC]

Hi Sickofcfs, perhaps it's my "Inner Revolutionary" speaking, but I kind of wouldn't mind at least a little bit of world-wide panic. :Retro wink:

Me neither -- a little bit, anyway. Unfortunately, the governments don't seem to agree with us on this one.

 

[Recovery Soon]

Me neither -- a little bit, anyway. Unfortunately, the governments don't seem to agree with us on this one.

But the Governments aren't reporting it- Journalists are. Some of the articles mention the risk to the Blood Supply, but it doesn't seem to raise many eyebrows.

I don't quite get it.

 

[biophile]

But the Governments aren't reporting it- Journalists are. Some of the articles mention the risk to the Blood Supply, but it doesn't seem to raise many eyebrows. I don't quite get it.

ME/CFS has been dismissed so many times that it is now second nature. This is going to be a steep uphill battle to reverse years of prejudice and pseudo-skepticism. We are going to hear the "correlation is not causation" argument ad infinitum to dismiss this study and even future studies which do suggest causation. Also, much of the world may be suffering from "pandemic fatigue" after how Swine Flu turned out.

 

[LaurieM]

The Independent said they had done an article but it was pulled because there was more important news

The odd thing about this is that just 6 weeks ago the Independent was the only UK mainstream that was reporting on the conflict arising between the CDC and NIH studies and it caused a great deal of interest - surely they should be following up their own story.

 

[BEG]

i can not find this article. can someone supply the link?

Look under Washington Wire. That's where I found it. My computer is so s l o w today.

 

[SOC]

But the Governments aren't reporting it- Journalists are. Some of the articles mention the risk to the Blood Supply, but it doesn't seem to raise many eyebrows.

I don't quite get it.

True, but government-paid scientists and their political superiors are reporting it. I'm not suggesting that they're lying -- certainly not Alter, Lo, et al -- but that everyone involved is encouraged to put a soft spin on it for the purpose of avoiding a panic. FDA, NIH, CDC don't scream "Blood supply is contaminated with a retrovirus!", so the media doesn't see it. YET. Some journalist will start digging and find out that ME/CFS is more than being a little tired, and that "mouse virus" means an immune affecting (infecting?) retrovirus, and so on. But it will take some time so the public can adjust slowly to this news.