List of links... research, news, info etc

[Bob]

I have just compiled a long list of internet links, mainly to information about XMRV research, but also to all sorts of other info... I made the list for someone who was doing some research, and I thought I'd post them here too, in case any of them are helpful for anyone.


Links to resources, information and articles


________________________________________

Initial discovery of XMRV in prostate cancer patients

XMRV was first discovered in 2006 in prostate cancer patients. Here is the published research paper...
"Identification of a novel Gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant." 31st March 2006. by Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, Silverman RH, DeRisi JL.
http://www.ncbi.nlm.nih.gov/pubmed/16609730?dopt=Abstract&holding=f1000,f1000m,isrctn

________________________________________

WPI's Science paper was published in Oct 2009 (XMRV discovered in ME/CFS patients)

The Paper published in Science:
http://www.sciencemag.org/cgi/content/abstract/1179052


Articles and information published soon after the WPI's Science paper was published in Oct 2009:

http://www.cancer.gov/newscenter/pressreleases/CFSxmrv

http://oslersweb.com/blog.htm?post=638469

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.meresearch.org.uk/information/publications/xmrvfind.html

http://aboutmecfs.org/blog/?p=920

http://www.investinme.org/WPI-Research-01.htm


________________________________________

WPI website, explaining XMRV (Judy Mikovits, working at the WPI, discovered XMRV in ME/CFS patients):

http://wpinstitute.org/xmrv/xmrv_qa.html

________________________________________

Information regarding the FDA/NIH study published in 2010 (PMRV’s discovered in ME/CFS patients):


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/


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 regarding the FDA discovery of PMRV’s in ME patients:

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

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)


Newspaper Articles regarding the FDA discovery of PMRV’s in ME patients:

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/

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

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Amy Dockser Marcus's XMRV blogs and articles in the Wall Street Journal (in order of date, most recent first):

http://blogs.wsj.com/health/2010/11/04/whats-next-for-x-as-in-xmrv/

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/


________________________________________

European positive XMRV studies:


Germany
XMRV found in respiratory secretions in 3.2% of healthy control samples (study not carried out on ME patients).
Respiratory samples taken from patients with respiratory tract infection and healthy persons.
http://www.cdc.gov/EID/content/16/6/1000.htm
http://www.cdc.gov/EID/content/16/6/1000-T.htm

"We detected XMRV in respiratory secretions of immunocompetent patients with and without RTI at a frequency of ˜3.2%, which is in good concordance with the recently reported prevalence in the general population of up to 4% [referring to the 3.7% in the Science paper]"

"Our findings indicate that XMRV or virus-infected cells might be carried in and transmitted by the respiratory tract."

"XMRV-specific sequences were detected in 2%–3% of samples from 168 immunocompetent carriers and ˜10% of samples from 161 immunocompromised patients"

Norway
62% of patients tested positive for XMRV at the Lillestrom Health Clinic, using the VIPdx lab.
http://www.prohealth.com/library/showarticle.cfm?libid=15684

The Lillestrom Health Clinic tested 80 patients and 50 were tested positive by either culture or serology test – a total of 62%. The tests were done in cooperation with VIPdx labs in the USA.

More information about these results will be given on the 28th of November 2010 in Oslo at the XMRV/MLV seminar with Dr. Judy Mikovits...
See this link for more details of the November Oslo XMRV seminar:
http://esme-eu.com/home/xmrv-mlv-se...f-november-2010-oslo-norway-article423-6.html

In November 2010, the Lillestrom Health Clinic will launch a large international research project on Human Gammaretrovirus and ME.


Belgium
Study led by Professor De Meirleir.
Researchers at the Vrije Universiteit Brussel (VUB) and the Belgian company biotech RED Laboratories "are able to identify a new retrovirus in patients with chronic fatigue syndrome."
http://translate.google.co.il/trans...la-fatigue-chronique&sl=fr&tl=en&hl=&ie=UTF-8
http://www.forums.aboutmecfs.org/attachment.php?attachmentid=3848&d=1284150125
http://www.forums.aboutmecfs.org/showthread.php?7124-Meirleir-confirms-XMRV-findings-in-Europe
http://www.nieuws.be/nieuws/VUB-ond...chronisch_vermoeidheidssyndroom_6a743703.aspx
http://regist2.virology-education.com/abstractbook/2010_8.pdf


Spain
Pilot study by J Blanco et al:
http://regist2.virology-education.com/abstractbook/2010_8.pdf
http://www.forums.aboutmecfs.org/sh...-Spanish-XMRV-studies&highlight=spanish+study

Detection of XMRV sequences in EBV-transformed B cell lines
"Envelope amplification yielded positive bands in 4 out of 21 individuals tested, 3 CFS affected individuals and 1 healthy donor.However, gag amplification yielded only 3 positive samples (1 CFS affected individual, 1 healthy donor and one HIV+ patient).In contrast, Real-time PCR of Pol fragment detected 7 positives samples in 14 individuals tested (4 SFC , 2 donors and 1 HIV+ individuals)."

Conclusions: Despite the discrepancies observed in the different PCR approaches using gag, pol or env sequences, our data suggest that EBV transformed B cell lines harbor XMRV specific sequences, and therefore this cell type may represent a reservoir for XMRV contributing to its potential pathogenesis.

Spain (progress of study unknown to me)
Hospital Vall d'Hebron in Barcelona:
http://www.abc.es/agencias/noticia.asp?noticia=574407
http://www.prohealth.com/library/showarticle.cfm?libid=15703

[It's uncertain that the facts have been reported correctly in this case]

________________________________________

Japanese positive XMRV study (Study of blood bank samples and prostate cancer patients, not ME patients)

XMRV found in 1.7% of random donor samples from the blood supply in Japan, testing for antibodies only.
http://www.diagnosesupport.com/heal...ted-virus-in&catid=132:xmrv-research&Itemid=8

"Although our study had a limited sample size, the prevalence among blood donors as determined by identifying XMRV-specific antibodies was found to be 1.7%, while that among prostate cancer patients was found to be 6.3%"

________________________________________

Dr Cheney and Dr Bell - unpublished studies

Separate unpublished studies in the USA, using patients from Dr Cheney's and Dr Bell's clinics, have confirmed high rates of XMRV infection in ME patients.

Dr Cheney:
74.5% of consecutive ME patients, who went to the Cheney Clinic, tested positive for XMRV.
http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf

Dr Bell:
80% of 10 patients currently meeting Fukuda criteria tested positive for MLV-related sequences and 1% of healthy controls.
http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf
http://www.cfids.org/xmrv/wrkshp-report.pdf

An extract from:
Of Mice and Men: A Summary of the First International XMRV Workshop.
by K. Kimberly McCleary with Steven H. Kleinman, BSc, MD, and Suzanne D. Vernon, PhD.

Dr. Hanson’s study tested samples obtained by David S. Bell from 20 CFS patients, 10 of whom reported having recovered but still demonstrated lower physical activity levels than the 10 healthy control subjects as measured by seven instruments employed by Dr. Bell. Of these 20 CFS patients, 11 (55%) were positive; 8 (80%) of the 10 patients currently meeting Fukuda criteria and 3 (30%) of the individuals who had recovered tested positive, compared to 1 (10%) of the 10 healthy controls. The gag sequences found by Dr. Hanson were more similar to those reported by Lo et al., than to the gag sequences for XMRV, although all are part of the same gammaretrovirus family. Her group is working to sequence the env sequence and the entire virus genome(s) now that they have external funding support from NIH.
http://www.cfids.org/xmrv/wrkshp-report.pdf

________________________________________

Info about published, unpublished, proposed and ongoing research studies

Details of all the published XMRV studies to date, including the two published positive USA studies, and all the negative published studies (A PDF chart, on the CFIDS Association of America's website):
http://www.cfids.org/xmrv/data-comparison-082410.pdf

Details of unpublished XMRV studies presented at the 1st International Conference on XMRV (A PDF chart, on the CFIDS Association of America's website):
http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf

Abstract Book - 1st International Conference on XMRV
Collated research papers presented at the 1st International Conference on XMRV (A PDF document):
http://regist2.virology-education.com/abstractbook/2010_8.pdf

And here's details (on Phoenix Rising website and forum) of proposed, upcoming, incomplete and unpublished research studies:
http://www.forums.aboutmecfs.org/entry.php?595-What-s-Next-for-XMRV
http://aboutmecfs.org/Rsrch/XMRVStudies.aspx

________________________________________

1st International Conference on XMRV

"Abstract Book" - Collated research papers presented at the 1st International Conference on XMRV (A PDF document):
http://regist2.virology-education.com/abstractbook/2010_8.pdf

Details of unpublished XMRV studies presented at the 1st International Conference on XMRV (A PDF chart, on the CFIDS Association of America's website):
http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf

________________________________________

Recent articles regarding the state of play for XMRV research:

‘World Class Virus Hunter’ To Head Up the Latest XMRV Study.
http://blogs.wsj.com/health/2010/09...atest-xmrv-study/?KEYWORDS=amy+dockser+marcus

XMRV On Everyone’s Mind at a Chronic Fatigue Syndrome Meeting.
http://blogs.wsj.com/health/2010/10...syndrome-meeting/?KEYWORDS=amy+dockser+marcus

Recent news and progress:
http://www.forums.aboutmecfs.org/co...-in-the-balance-A-Tale-of-Two-Conferences-CFS

Ongoing and proposed XMRV research:
http://www.forums.aboutmecfs.org/entry.php?595-What-s-Next-for-XMRV
http://aboutmecfs.org/Rsrch/XMRVStudies.aspx

________________________________________


List of some of the ongoing research:

Harvey Alter (discovered the HEP C virus), working for the FDA investigating MLV-related viruses in ME/CFS patients. He is looking for antibodies, and will be isolating the virus, and sequencing the genome of the PMRV's which he found.

W. Ian Lipkin (internationally recognized for his work with West Nile virus and SARS) working for US government health agencies to investigate XMRV in ME patients.
http://blogs.wsj.com/health/2010/09...atest-xmrv-study/?KEYWORDS=amy+dockser+marcus

Frank and Sandra Ruscetti, working at the NCI (National Cancer Institute) carrying out research into XMRV and its effect on the immune system.
http://ccr.cancer.gov/staff/staff.asp?staffid=270

Dr Singh, carrying out some complex studies on XMRV.
http://www.forums.aboutmecfs.org/entry.php?585-Report-From-the-OFFER-2010-Conference

Judy Mikovits (discovered XMRV in ME patients) looking at a link between immune abnormalities and XMRV, XMRV in autism and atypical MS. About to publish a UK study showing XMRV in about 80% of ME patients.
http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf
http://www.forums.aboutmecfs.org/sh...CFS-Conference-Update-on-XMRV-by-Dr.-Mikovits

The US Blood Working Group is working towards standardising the methodology for detecting XMRV, and then they will do larger scale studies looking for XMRV in the population.
http://www.cfids.org/cfidslink/2009/120203.asp
http://aboutmecfs.org/Rsrch/XMRVStudies.aspx
http://blogs.wsj.com/health/2010/07...e-to-hear-about-xmrv-working-groups-research/

The Health and Human Services Working Group on XMRV will have oversight over the federal effort on XMRV. Dr. Mikovits and Dr. Vernon,will be part of the group along with representatives from the NIH, CDC and FDA. It appears to be a large effort indeed. With regards to ME/CFS the group is taking a three stage approach:
(1) First they will attempt to standardize and validate tests for XMRV. Then they'll test 1,200 healthy donors and 100 patients provided by the Whittemore Peterson Institute.
(2) Secondly they'll assess the prevalence of XMRV in the general populations, the blood supply and in other groups of people with CFS
(3) Lastly they'll dig into to how XMRV is transmitted, what effects it may have, and how it may affect other groups.
http://aboutmecfs.org/Rsrch/XMRVStudies.aspx

More info about upcoming XMRV studies:
http://www.forums.aboutmecfs.org/entry.php?595-What-s-Next-for-XMRV
http://aboutmecfs.org/Rsrch/XMRVStudies.aspx


________________________________________

Info on the WPI's UK study:

Not yet published, but reported to be about 80% positive for XMRV, and 6-8% positive in the UK blood supply.
See info from the CFIDS Association of America's website, here:
http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf
http://www.forums.aboutmecfs.org/sh...CFS-Conference-Update-on-XMRV-by-Dr.-Mikovits

________________________________________

ME patient UK blood donor ban controversy (Dr Shephard and UK government quotes on blood ban):
http://www.meassociation.org.uk/?p=2511
http://www.meassociation.org.uk/?p=2460
http://www.meassociation.org.uk/?p=2324

________________________________________

Osler's web - Hillary Johnson - US Author and Journalist following the ME/CFS story since the 1980's.
http://oslersweb.com/

________________________________________

CFIDS Association of America's comprehensive XMRV info webpage:
http://www.cfids.org/xmrv/

Cort Johnson's Phoenix Rising 'XMRV Buzz page':
http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx
________________________________________

1980's US videos about ME and the Incline Village outbreak:

Primetime:
http://vimeo.com/13048135

Documentary:
http://vimeo.com/9714250

________________________________________

What About ME? - New ME documentary being made

documentary website:
http://www.whataboutme.biz/

documentary blog:
http://whataboutmefilm.blogspot.com/

documentary vimeo homepage (interactive social site):
http://www.vimeo.com/groups/whataboutme
________________________________________

Death of Sophia Mirza:
http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece

Death of Lynn Gilderdale:
http://www.guardian.co.uk/uk/2010/jan/25/mercy-killing-kay-gilderdale-cleared


________________________________________

Simon Wessely - quotes, research, discussions and parliamentary speeches:

"Most CFS patients fulfil diagnostic criteria for psychiatric disorder"

"The prognosis may depend on maladaptive coping strategies"

"Research suggests that dysfunctional illness beliefs are common in CFS patients. Such inaccurate beliefs might fuel avoidance of activity."

http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

"The average doctor will see they are neurotic and he will often be disgusted with them"

"The term ME may mislead patients into believing they have a serious and specific pathological process. Several studies suggest that poor outcome is associated with social, psychological and cultural factors"

"Functional somatic syndromes include chronic fatigue syndrome"

http://www.investinme.org/Article-130 Williams Hooper Wesselys Ways.htm

Research paper by Simon Wessely, Trudy Chalder and T. Deale
"Illness beliefs and treatment outcome in chronic fatigue syndrome"
http://www.ncbi.nlm.nih.gov/pubmed/...ed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=11

________________________________________

Countess of Mar speaking in the House of Lords about Simon Wessely.
Controversy surrounding Simon Wessely and the psychological school of thought. Recommended reading!
http://www.theyworkforyou.com/lords/?id=2002-04-16a.894.0&s=wessely+speaker:12904#g894.1
http://www.theyworkforyou.com/lords/?id=2004-01-22a.1180.2&s=wessely+speaker:12904#g1180.3
http://www.theyworkforyou.com/lords/?id=2006-12-07d.1248.6&s=wessely+speaker:12904#g1280.2

________________________________________

Earl Howe (aka Lord Howe, aka Frederick Curzon, aka Frederick Howe), speaking in the House of Lords.
A very intelligent speech about about the nature of ME and about Simon Wessely. Recommended reading!
http://forums.aboutmecfs.org/showth...lood-ban-8-Nov&p=136426&viewfull=1#post136426
http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-13.htm

________________________________________

 

[George]

This is amazing Bob. It's like WOW, WOW, WOW amazing and it's really hard for me to bark like that! Thank you so much from the bottom of my most coveted food bowl. (grins)

No seriously this is a fantastic resource. You have some really great organization skills.!!!!!!!

 

[Bob]

This is amazing Bob. It's like WOW, WOW, WOW amazing and it's really hard for me to bark like that! Thank you so much from the bottom of my most coveted food bowl. (grins)

No seriously this is a fantastic resource. You have some really great organization skills.!!!!!!!

Aw, thank you Georgy... I didn't expect such an enthusiastic response... Thank you for such nice feedback...

 

[CBS]

Wow, Wow, Wow!, is right!

Bob, Thanks for sharing this!

 

[maryb]

Bob you are bl***y marvellous
What a fantastic resource this is for everybody - THANK YOU

 

[Bob]

Thanks everyone, for all the positive feedback...
It's really appreciated.

I've just added some info and expanded some sections, so there's more information on the list now.

I've also made a separate list of the European XMRV studies that I've got information on, with brief details of the studies and the results, on a separate thread, here:
http://www.forums.aboutmecfs.org/sh...sitive-studies&p=134746&viewfull=1#post134746

 

[Francelle]

Fantastic Bob! Well done.

The only link I have read so far is the first link to the Countess of Mar's speech in the UK Parliament in about 2002. (It's right at the end of the huge list Bob posted). What an amazing piece of oratory. If only this could have been published in a British newspaper!

 

[Enid]

Thanks again Bob for keeping us up to date - all sorts of things going on in different "camps" so it has been difficult to see the big picture. Now we can. Just great.

 

[Merry]

Bob, you are a Prince. Long live Bob!

 

[leela]

I second all the WOWs and elevation to Princely status!
This is *so* useful, and such an amazing feat of organizational brilliance!
Thank you!

 

[Berthe]

Dear Bob,

Although it is raining cats and dogs, you are a blessing from the sky. Thank you very very very much.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[Bob]

Aw, you lovely people!

I know I said I really appreciated all the positive feedback, but I'm getting a little embarassed at the level of praise now!

But I'm glad it's helpful to people.

Prince Bob :innocent1: heehee...

 

[WillowJ]

Great post, Bob! You've done a fabulous job compiling all of that! Well done.

The Countess of Mar has ME herself. She's been fighting our battle a long time and could use some more support.

Wow, with such a long post, I'm suprised I have anything to add, but I do know of a couple more blog posts which are really good.
http://livingwithchronicfatiguesynd...or-myra-mcclure-about-xmrv-and-contamination/
http://www.cfscentral.com/2010/08/sunday-monroe-5-am-final-final.html

And the Countess commissioned this document:
http://www.satori-5.co.uk/word_articles/me_cfs/prof_hooper_3.html
THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS?
Document prepared for the Countess of Mar by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, in collaboration with members of the ME community, Department of Life Sciences, University of Sunderland

 

[Bob]

Thanks for the extra links Willow... I haven't read them yet, but I'm working on it! I've got them bookmarked.

 

[Bob]

The only link I have read so far is the first link to the Countess of Mar's speech in the UK Parliament in about 2002. (It's right at the end of the huge list Bob posted). What an amazing piece of oratory. If only this could have been published in a British newspaper!

Yes, the Countess of Mar's speeches are amazing aren't they Francelle... Really powerful, and scathing of Wessely...
I think she's one of our best advocates... She really sticks her neck out for people with ME.

 

[Grape Funk]

Bob You're the man, 'priciate this!