FDA/NIH study - links to information and articles

[Bob]

Useful links to information regarding the FDA/NIH study


FDA paper published in PNAS:
http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

FDA paper - Supporting information to FDA paper (technical):
http://www.pnas.org/content/suppl/2010/08/16/1006901107.DCSupplemental/pnas.201006901SI.pdf

FDA paper (extract) - Diagram of phylogenetic tree of MLV-related virus gag gene sequences taken from blood samples of CFS patients and blood donors (diagram only):
http://www.cfids.org/mlv/phylogenetic-tree.pdf

FDA press release:
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm223277.htm

FDA Questions and Answers:
http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm

PNAS editorial:
http://www.pnas.org/content/early/2010/08/16/1012027107.full.pdf+html

PNAS commentary:
http://www.pnas.org/content/early/2010/08/16/1007944107

Q&A: PNAS editor - Why I delayed XMRV paper:
http://www.the-scientist.com/blog/display/57628/

FDA Telebriefing - Transcript of the FDA telebriefing:
http://www.wpinstitute.org/news/docs/FDAbriefing_082310.pdf

FDA Telebriefing - A few highlights from NIH/FDA telebriefing - Aug. 23, 2010
http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=114941&viewfull=1#post114941
http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=115144&viewfull=1#post115144

FDA Telebriefing - Recordings of the FDA telebriefing:
http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=115179&viewfull=1#post115179
http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=115183&viewfull=1#post115183

NIH - Research Matters:
http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm

The CFIDS Association of America
Follow-Up FAQs to the Study by Lo, Alter et al.
September 2010 CFIDSLink:
http://www.cfids.org/cfidslink/2010/090104.pdf


Blogs:

Phoenix Rising forum (Cort Johnson):
http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives

CFS Central (Mindy Kitei)
http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

Patient Advocate (Christopher Cairns)
http://cfspatientadvocate.blogspot.com/2010/08/second-most-important-day-in-mecfs.html
http://cfspatientadvocate.blogspot.com/2010/08/xmrv-mlv-like-variant.html

CFIDS Association of America (CAA) (K. Kimberly McCleary):
http://www.cfids.org/mlv/caa-response-082310.asp
http://www.cfids.org/mlv/phylogenetic-tree.pdf (phylogenetic tree - diagram only)

Health Central (Karen Lee Richards):
http://www.healthcentral.com/chronic-pain/c/5949/118461/retrovirus


Newspaper Articles:

Amy Dockser Marcus's blogs and articles in the Wall Street Journal (in order of date, most recent first):
http://blogs.wsj.com/health/2010/08/26/betting-on-x-as-in-xmrv-with-a-big-ticket-research-center/#
http://blogs.wsj.com/health/2010/08...t-in-chronic-fatigue-syndrome/?forumid=331851
http://blogs.wsj.com/health/2010/08...onic-fatigue-syndrome-link-has-its-own-story/
http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=googlenews_wsj
http://blogs.wsj.com/health/2010/07...-fatigue-syndrome-link-not-easy-to-tease-out/
http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/
http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html
http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

New York Times:
http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1

The Washington Post:
http://voices.washingtonpost.com/ch...nce_virus_may_cause_c.html?xid=rss-topstories

Medscape Today:
http://www.medscape.com/viewarticle/727496

Los Angeles Times:
http://www.latimes.com/health/la-sci-fatigue-virus-20100824,0,127566.story

Scientific American:
http://www.scientificamerican.com/blog/post.cfm?id=new-research-linking-chronic-fatigu-2010-08-23

Science magazine:
http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html

Daily Mail:
http://www.dailymail.co.uk/health/a...igue-syndrome-caused-mouse-related-virus.html

The Guardian:
http://www.guardian.co.uk/world/feedarticle/9237473

New Scientist:
http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html


YouTube Videos from the WPI:

Judy Mikovits reacts to the Lo/Alter paper
http://www.youtube.com/watch?v=9ZEwQUg7o6I&feature=channel&forumid=331851

WPI congratulates Alter and Lo
http://www.youtube.com/watch?v=ne7if7FKJFg&feature=channel



Other Phoenix Rising discussion threads:

There's another Phoenix Rising thread with a list of scientific and media links here:
http://www.forums.aboutmecfs.org/sh...age-of-Dr.-Alters-NIH-paper-post-stories-here

 

[Bob]

Have I missed anything obvious?

Please add any other useful links

 

[VillageLife]

thanks very much Bob

 

[shannah]

Have I missed anything obvious?

Please add any other useful links

Bob - this is incredibly useful to have it all so well organized in one short post. I spend so much time digging for info only to forget where I saw it 10 minutes later. Thank you for this.

These 2 may be worthwhile adding as well.

Mindy Kitei
http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

Patient Advocate - Christopher Cairns
http://cfspatientadvocate.blogspot.com/

 

[taniaaust1]

crap.. we doubled up on the work there.. i spent all my energy today looking for links.. i did a list of sources which can be used in advocacy today which consisted of

1st XMRV WPI study (Lombardi) http://www.sciencemag.org/cgi/content/abstract/1179052
wall street journal on 1st XMRV study, XMRV and prostate cancer http://blogs.wsj.com/health/2009/10/...igue-syndrome/
2nd XMRV/MLV study (Atler) http://www.pnas.org/content/early/20...01107.abstract
3rd study (soon to come fully out)
Aust. Redcross about blood ban http://www.donateblood.com.au/news-e...s-donor-policy
Wall Street Journal ME/XMRV/MLV http://blogs.wsj.com/health/2010/08/...igue-syndrome/
Wall Street Journal ME/XMRV/MLV http://online.wsj.com/article/SB1000...076968322.html
FDA Questions and Answers on MLV. http://www.fda.gov/BiologicsBloodVac.../ucm223232.htm *
Testing of MVL and XMRV, we havent yet got http://www.vipdx.com/docs/Test_Requisition.pdf
"Findings by Reno Scienctists" talks about clinical trial etc http://www.rgj.com/article/20100816/NEWS/100816069/1321 (great article thou need to point out if using it.. that the FDA findings are now out and include that too)
Corts Overview, Four Viruses, The Alter Paper Arrives http://www.forums.aboutmecfs.org/con...-Paper-Arrives
Unofficial PR poll on prevalence in families http://www.forums.aboutmecfs.org/sho...e-Poll-Take-II
"Second Study Supports Viral Link to CFS" http://news.sciencemag.org/scienceno...iral-link.html (good article to attach to any advocacy for more funding!)
XMRV and prostate cancer http://www.plospathogens.org/article...l.ppat.0020025
Article XMRV/CFS http://edition.cnn.com/2010/HEALTH/0...E2dQ&wom=false (very good article content to use for most things thou uses heading "chronic fatigue")

 

[highwaykind]

I'm a newbie here on the forums (post viral cfids, 10 years and counting, so no newbie in that regard) so I don't know if this has already been asked.
Also sorry to break in and go slightly off topic.

Has anyone already grouped/ organized all research articles/info into a Group in Zotero and/or Mendeley?

Both free software to catalog research articles, add your own summary/comment. You can also add links to files and webpages etc. When you have a pubmed ID or doi numer it will auto-fetch the article/author etc for you.

Zotero http://www.zotero.org/ works with Firefox, Mendeley http://www.mendeley.com/ is standalone and has plugins for several browsers. (Zotero optionally syncs to Mendeley). I have both installed, but only have been using them for a few days, I don't know which is 'best' yet - but it definitely beats having links bookmarked or in a row online

There is so much to look through I don't know where to start! Having all articles with the option of a 'read/not read' mark and my own summary might help narrow things down a little.

 

[Bob]

Bob - this is incredibly useful to have it all so well organized in one short post. I spend so much time digging for info only to forget where I saw it 10 minutes later. Thank you for this.

Yes, I'm exactly the same Shannah... it's exactly 10 minutes isn't it, our memory span!
I'm sure that there was one really important article, or editorial, that I read, but I just can't remember what it was or who it was written by, so I haven't been able to include it.

These 2 may be worthwhile adding as well.

Mindy Kitei
http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

Patient Advocate - Christopher Cairns
http://cfspatientadvocate.blogspot.com/

Thanks shannah, I've added your links to my list to make it easier for people...

 

[Bob]

... we doubled up on the work there.. i spent all my energy today looking for links.. i did a list of sources which can be used in advocacy today which consisted of

Great stuff Tania... a great set of links... you've got a whole set of useful links to the XMRV study there as well...

 

[Bob]

I'm a newbie here on the forums (post viral cfids, 10 years and counting, so no newbie in that regard) so I don't know if this has already been asked.
...

Hi highwaykind...
A big welcome to the forum to you... You're amongst friends here... I hope you enjoy using the forum...
I haven't heard of Zotero or Mendeley... I'll have a look at them.
Enjoy the forum,
Take care,
Bob

 

[Gemini]

Have I missed anything obvious?

Bob,

Thanks for all your work!

It's "really" helpful to have everything in one place!

Gemini

 

[Sean]

Have I missed anything obvious?

There is a distinct and inexcusable lack of chocolate cake.





Seriously, great lists (Bob & Tania). Very useful. Saves a whole lot of hunting around. Thanks.

 

[Bob]

There is a distinct and inexcusable lack of chocolate cake.

Yes, that's a totally inexcusable oversight! I don't know what I was thinking about! Sorry, I'll sort it out ASAP! heehee...

 

[Bob]

Has anyone got any links to any UK newspaper articles? I've only come across the Daily Mail so far.

 

[Bob]

Does anyone know if there is an article or editorial from the FDA?

I'm sure that I've missed out a useful article that I read, that I just can't find anywhere.

I can't remember what it was.

 

[jace]

This is an interesting science based analysis, bit of a tough read, with a lucid comment on the implications drawn from the telebriefing with Alter and Lo:
http://laikaspoetnik.wordpress.com/2010/08/30/does-the-nhifda-paper-confirm-xmrv-in-cfs-well-ditch-the-mr-and-scratch-the-x-and-youve-got-mlv/#comment-5693

Might be valuable reading for certain forum owners.

British press links:
http://edinburghnews.scotsman.com/features/Health-Baby-Sophia-is-a.6498777.jp?articlepage=1 (Alter paper mention only)
http://www.guardian.co.uk/world/feedarticle/9237473
New Scientist with McClure :worried:
BBC disability forum (and that's all folks :scared

Other coverage - Iran!!
Malta (not great, tiny mention) Hong Kong (reprint of NYT, and behind paywall..)

Scan from Malta Today (article not online) below

 

[Bob]

Thanks for the info Jace :Retro smile:

 

[taniaaust1]

Does anyone know if there is an article or editorial from the FDA?

I'm sure that I've missed out a useful article that I read, that I just can't find anywhere.

I can't remember what it was.

I suggest to try their site. I think I may of read something on XMRV at the FDA site.
..................

To everyone.. sorry about the links Ive posted if they didnt work, Im not sure what I did wrong but have just found out that apparently many of them arent working (I had just cut and pasted them off of the relevant pages, so assumed they were all working), so i'll check them out and fix hopefully in next few days.

 

[LJS]

A rundown of all the mainstream media, blog, magazine, and journal coverage can also be found here: http://www.forums.aboutmecfs.org/sh...age-of-Dr.-Alters-NIH-paper-post-stories-here