Media coverage 1: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients

Media coverage round up 1: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients  (XMRV PNAS paper)

Shortlink: http://wp.me/p5foE-32B

For Newswire; Abstract; Full paper; Supporting information; Editorial; Commentary go here:

Study: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients finally published

Updates will be added to the top of this list:

International media coverage:

 

http://blogs.wsj.com/health/2010/08/25/does-x-the-virus-that-is-mark-the-spot-in-chronic-fatigue-syndrome/

Does X (the Virus, That Is) Mark the Spot in Chronic Fatigue Syndrome?

By Amy Dockser Marcus

When it comes to chronic fatigue syndrome, researchers are starting to ask: What’s the role of the virus known as “X”?

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

New Scientist  |  25 August 2010

Virus link with chronic fatigue syndrome resurfaces

By Andy Coghlan

“The discovery of mouse virus fragments in cells from people with chronic fatigue syndrome has reinforced earlier claims that they may cause the condition.”

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http://www.smh.com.au/lifestyle/wellbeing/virus-link-to-chronic-fatigue-gives-hope-to-sufferers-seeking-a-cure-20100824-13qgb.html

Syndey Morning Herald
Virus link to chronic fatigue gives hope to sufferers seeking a cure August 25, 2010

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http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives
FOUR Viruses? The Alter XMRV Paper Arrives at Phoenix Rising

By Cort Johnson for Phoenix Rising

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Links collated by Jean Harrison via Co-Cure Listserv mailing list:

http://www.cbsnews.com/8301-504763_162-20014504-10391704.html
http://wellness.blogs.time.com/2010/08/24/study-links-chronic-fatigue-to-mouse-virus/
http://www.smh.com.au/lifestyle/wellbeing/virus-link-to-chronic-fatigue-gives-hope-to-sufferers-seeking-a-cure-20100824-13qgb.html
http://www.cnn.com/2010/HEALTH/08/23/chronic.fatigue.virus/?hpt=T2
http://www.psychologytoday.com/blog/complementary-medicine/201008/xmrv-virus-confirmed-in-cfs
http://www.webmd.com/chronic-fatigue-syndrome/news/20100823/virus-linked-to-chronic-fatigue-syndrome
http://www.abc.net.au/science/articles/2010/08/24/2991897.htm
http://www.latimes.com/health/la-sci-fatigue-virus-20100824,0,127566.story
http://www.businessweek.com/lifestyle/content/healthday/642400.html?chan=rss_topStories_ssi_5
http://www.npr.org/blogs/health/2010/08/23/129383111/scientists-find-traces-of-virus-in-chronic-fatigue-patients
http://www.eht-forum.org/news.html?fileId=news100824071904&from=home&id=0
http://blogs.nature.com/news/thegreatbeyond/2010/08/delayed_chronic_fatigue_syndro.html
http://www.nytimes.com/2010/08/24/health/research/24fatigue.html
http://www.mdnews.com/news/hd/2010_35/hd_642389
http://www.hc2d.co.uk/content.php?contentId=15883

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Wall Street Journal Blogs

http://blogs.wsj.com/health/2010/08/24/pnas-paper-on-virus-chronic-fatigue-syndrome-link-has-its-own-story/

Health Blog
WSJ’s blog on health and the business of health.

By Amy Dockser Marcus

August 24, 2010, 1:55 PM ET.

PNAS Paper on Virus-Chronic Fatigue Syndrome Link Has Its Own Story

The much-awaited PNAS paper published yesterday (and reported in today’s WSJ) about the discovery of a family of retroviruses in patients with chronic fatigue syndrome came with a backstory — its own editorial explaining the publication process.

Here’s why that was necessary. Earlier in the summer, the WSJ reported that the completed paper, by a team of researchers from the NIH, FDA and Harvard Medical School, contradicted findings of a similar study done by CDC researchers and was being held until the discrepancy could be sussed out.

Read on

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US patient organisations

http://www.cfids.org/mlv/caa-response-082310.asp

Another Turn of the Retrovirus Kaleidoscope

By K. Kimberly McCleary  |  23 August 2010

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Podcasts

Listen to the NIH telebriefing on the NIH/FDA study published in The Proceedings of the National Academy of Sciences (PNAS) 23 August 2010:

Part 1: http://www.mediafire.com/?6phy8fyxxj4mhy9

Part 2: http://www.mediafire.com/?40esxfnjflnyzhz  

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Whittemore Peterson Institute Press release in response to paper

http://www.wpinstitute.org/news/docs/WPI_pressrel_082310.pdf

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http://www.businessweek.com/news/2010-08-23/chronic-fatigue-linked-to-mouse-virus-in-u-s-government-study.html

Business Week
Chronic Fatigue Linked to Mouse Virus in U.S. Government Study

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http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1&hp

New York Times
Study Links Chronic Fatigue to Virus Class

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http://voices.washingtonpost.com/checkup/2010/08/new_evidence_virus_may_cause_c.html?hpid=topnews

Washinton Post
New evidence that virus may cause chronic fatigue

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

Second Paper Supports Viral Link to Chronic Fatigue Syndrome
by Martin Enserink on August 23, 2010 4:02 PM

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http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100262656

More Evidence Virus Plays Role in Chronic Fatigue Syndrome
Condition afflicts a million Americans, but cause, treatments remain elusive
By Jenifer Goodwin HealthDay Reporter

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http://www.the-scientist.com/blog/display/57628/

Q&A: Why I delayed XMRV paper, The Scientist – Magazine of the Life Sciences

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http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=googlenews_wsj

Wall Street Journal

 

Video

http://www.youtube.com/watch?v=9ZEwQUg7o6I&feature=channel

Dr Judy Mikovits on paper on YouTube

 

Blogs

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

CFS Central Blog write-up by journalist Mindy Kitei

XMRV Retrovirus: Round up 25: WPI on DeFreitas, Hansard, MEA, AfME, Johnson

XMRV Retrovirus: Round up 25: WPI DeFreitas statement, Hansard, MEA, Action for M.E., Hillary Johnson blog

WordPress Shortlink: http://wp.me/p5foE-2tq

XMRV Retrovirus: Round up 24: Testing and news of research studies click  here: http://wp.me/p5foE-2sX

Click here for all previous XMRV Round ups and XMRV related postings in reverse date order

Whittemore Peterson Institute on Facebook

Statement posted by Whittemore Peterson Institute on 25 November under their “Notes” tab

http://tinyurl.com/WPIFacebook8  

Fact #8

Wednesday, November 25, 2009 at 8:44pm

XMRV is Not the retrovirus identified by De Freitas et al.

the publication and patent submitted by De Freitas et all clear describe the molecular characteristics of a retrovirus that is not a gamma (type C) retrovirus. The patent submitted for the retroviruses states

“Chronic Fatigue Immunodeficiency Syndrome associated virus, hereafter referred to by the name CAV may be morphologically characterized as a retrovirus, particularly a non-C retrovirus which is capable of infecting humans. Electron microscopy of viral particles formed in infected human cell cultures suggests that CAV is a non-C type retrovirus because of its diameter, morphology, formation and location of intracellular virions. The Electon micrographs of XMRV shown in Lombardi et al clearly depict a budding type C retrovirus of 90-100microns The DeFritas patent goes on to say “More specifically, CAV-infected cells could be characterized by electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria in the cells. All particles are the same shape and size, 46-50 nm. No extracellular virus is observed. No forms budding from the cytoplasmic membranes are observed.

Thus, CAV-infected cells could also be charcterized by the presence of intracytoplasmic particles”Gamma (type C) retroviruses are 90 1100uM as shown in Lombardi et al and all are shown to consist of electron dense cores and specifically to bud extra-cellularly not intracellularly.

The data describes in the Defreitas patent can be found at:

http://www.ncf-net.org/forum/revelations.html

These data are indisputable that XMRV is NOT the retrovirus described by De Freitas et al.”

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Hansard

http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm091207/text/91207w0010.htm

7 Dec 2009 : Column 46W

Biomedical Research

Paul Rowen: To ask the Minister of State, Department for Business, Innovation and Skills what biomedical research into myalgic encephalomyelitis and xenotropic murine leukaemia virus-related virus is being undertaken. [304330]

Mr. Lammy: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.

In 2008-09 the MRC’s total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to £728,000. This supported four projects including a £164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.

The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed. A note of the discussions will be published on the MRC website in due course.

The MRC’s National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems.

© Lord Hansard

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ME Association

Response from Dr Charles Shepherd to concerns from member of the ME community:

Neil [Riley, Chair MEA Board of Trustees] has asked if I could respond to your email to the MEA about patient selection in XMRV research that might be funded by the RRF.

This is a complex issue and I’ve tried to explain the situation in rather more detail in version 4 of the MEA position statement, which is now up on the MEA website: http://www.meassociation.org.uk

Very simply, we are looking at a two stage research situation that will hopefully clarify the situation regarding XMRV prevalence in the ME/CFS population at some point in 2010, and (depending on the results) then move on to looking at viral pathogenicity in more detail (ie is this a disease causing virus?) and antiviral treatment. Incidentally, the results of a new research study looking at the use of AZT as a possible treatment for XMRV will be up on the MEA website later today: www.meassociation.org.uk .

As you know, the WPI study used patients who met both Fukuda research criteria and Canadian clinical criteria – partly because scientific journals don’t accept the validity of the CCC as a valid research tool..

Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material >> stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any. So there was no point in the MEA insisting that research funding in stage one could only be used in studies involving Canadian criteria patients, or CC + Fukuda.. I therefore suggested that these ‘first off the mark’ studies should only involve Fukuda criteria patients as here in the UK there is a real worry that retrovirologists, who have very little general knowledge of ME/CFS, might be using samples from patients from NHS sources that meet either Oxford research or even NICE clinical criteria – the latter being used by the NHS clinics. It would have been helpful if the paper itself had carefuly specified the selection criteria because I know that there are researchers taking this forward on the basis that CFS in the paper = CFS Fukuda.

As far as the second stage is concerned, we would certainly be looking at funding a study that would use Fukuda plus Canadian criteria but there are still going to be major problems and we cannot be dogmatic here. This is because the NHS services do not use Canadian criteria in their clinical assessments and most of us who work in the UK private sector don’t have sufficient numbers of new patients coming through to quickly build up a decent number (ie 100 cases) meeting both criteria, and we don’t tend to be dogmatic about the use of criteria in patients already diagnosed.

And this may be why MERUK has decided to fund a study in Sweden rather than here in the UK. The MEA would prefer to fund UK XMRV studies but we are willing to look at overseas proposals – as has already happened.

As you will have seen I have spent a great deal of time over the past few weeks talking to virtually all the virologists and retrovirologists here in the UK that are interested in taking this work forward, and the MEA is very keen to help in whatever way we can. I hope the researchers are now well aware of the issues surrounding careful patient selection (some of them were definitely not) and not just the science behind XMRV.

I hope you find this helpful.

I would be happy to discuss in more detail if you would like to call me on my home number when convenient.

Regards

Dr Charles Shepherd
Hon Medical Adviser, MEA

(This information may be forwarded if you wish to do so)

ME Association

XMRV and ME/CFS? What do we know so far? And what don’t we know? (version 4)

27  November 2009

Version 4 of the MEA position statement on XMRV clarifies some of the points and queries raised in the previous three summaries. Version 4 also updates the situation on XMRV research in the UK, testing for XMRV, and refers to our correspondence with the Chief Medical Officer regarding blood supplies and blood donation.

This summary is intended to be a balanced account of the current situation. It therefore not only raises questions but is also very cautious when it comes to drawing any firm conclusions about the role of XMRV in ME/CFS as either a diagnostic marker, causative agent, or abnormality that requires active treatment with antiviral medication.

[…]

ROLE OF ME RESEARCH UK (MERUK) and IRISH ME TRUST

MERUK and The Irish ME Trust have just announced that they are providing joint funding for a replication study that will be carried out in Sweden. This work will be carried out by Professor Blomberg, Head of the Research Group of Clinical Virology, University of Uppsala and Professor Gottfries, from the Sahgrenska University Hospital, Molndal. The researchers will retrospectively test previously stored samples from 3 groups of patients (20 Fukuda defined ME/CFS; 20 fibromyalgia; 20 irritable bowel) and 20 controls. In addition, they will prospectively test samples from 120 ME/CFS patients defined by Fukuda 1994 and Canadian 2003 clinical criteria. Results are expected in Spring/Summer 2010. More information on this study can be found on the MERUK website.

http://www.meresearch.org.uk/research/projects/xmrvsweden.html

SELECTING PEOPLE FOR FURTHER RESEARCH STUDIES

There is clearly an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in spring/summer 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.

In the present situation, many research groups are reluctant or unwilling to use Canadian criteria. This is because these are essentially clinical criteria and in the eyes of many researchers they have not been validated for use in research studies as stand alone criteria. There is also the problem in that most research groups do not having ready access to stored blood samples from ME/CFS patients that meet Canadian criteria.

So the best way forward may be for everyone to agree to use either Fukuda-defined CFS – which would obviously help to define which sub-groups of patients are XMRV positive under this CFS umbrella – or, if possible, to use patients that meet both Fukuda CFS and Canadian clinical criteria. It is worth noting that a significant proportion of people with Ramsay-described ME will not meet Fukuda criteria for CFS – so they are likely to be excluded from research currently taking place.

We do not believe that it is sensible to extend the entry criteria into research studies by using the 2005 ’empirical’ definition of CFS for patient selection purposes as this will bring in an even more diverse group of patients who have chronic fatigue. This point has also been made by Dr Nancy Klimas when she addressed the CFSAC meeting in Washington in October.

Provided there is careful selection of ME/CFS patients, healthy controls and disease controls, we may then be able to draw some meaningful conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.

Besides using stored blood samples, research needs to involve fresh clinical cases, as well as other disease groups (particularly inflammatory conditions with immune activation) and properly matched healthy controls.

Click for full version 4 here

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Action for M.E.  

http://www.afme.org.uk

Professor Tony Pinching, Action for M.E.’s Principal Medical Adviser, sets out his views on XMRV in this article from InterAction 70, published this week:

InterAction 70 Christmas 2009

Page 9

Potential virus breakthrough

We thought all our Christmases had come early in October, when researchers at the Whittemore Peterson Institute in Reno, USA announced that they had identified genetic material (DNA) from a mouse virus – murine leukaemia virus related virus or XMRV- in 68 out of 101 CFS patients (67%) compared to 8 out of 218 (3.7%) of healthy people.

Further blood tests showed that more than 95% of CFS patients have antibodies to XMRV, indicating they had been infected with the virus, which may then have lain dormant in their DNA.

Dr Judy Mikovits, research director, Whittemore Peterson Institute, is testing a further 500 blood samples collated from patients diagnosed with CFS in London.

In our press statement, quoted in part by the BBC, Sir Peter Spencer said:

“It is still early days so we are trying not to get too excited but this news is bound to raise high hopes among a large patient group that has been ignored for far too long.

“If the researchers can go on to prove a definitive cause and effect between this retrovirus and M.E., it will make an enormous difference to 250,000 men, women and children who have M.E. in this country.

“Action for M.E. has long been calling on the UK Government to invest more in research into the causes of this horrible illness. Once we know the cause, researchers can start working on more effective treatments, preventive measures and ultimately a cure for M.E.”

What does this research signify?

Professor Tony Pinching, Action for M.E.’s Principal Medical Adviser says the study needs to be confirmed by independent research and it would be very premature to think about clinical tests or treatments based on these early findings (see below). His caution is echoed in statements by Professor Andrew Lloyd, Director, Centre for Infection and Inflammation Research, University of New South Wales (see www.me-cfs.org.au/node/448 ), NCI director Dr John Niederhuber (www.cfids.org/temp/xmrv-guidelines-nci.asp ) and Dr Charles Shepherd, ME Association www.meassociation.org.uk  (under ‘quick links’ on their home page). Professor Pinching comments:

“A new research report about CFS in a major science journal is obviously reason for some excitement. Many of you will have heard the news reports – some will have been hopeful, others sceptical, and many others unsure what to think. And that’s about the size of it too for the informed observer of the scientific data.

“In essence, a US study has shown apparent evidence of a virus (XMRV) in the blood cells of people with CFS, taken from a repository of samples from ‘well-characterised cohorts of patients.’

“XMRV is related to a class of mouse leukaemia viruses that have not been previously firmly associated with any human disease, although recently seen in some patients with prostate cancer. Although these viruses have been much studied in cancer biology, they can also be contaminants, although circumstantial evidence is against this here.

“67% of CFS patients compared with 4% of controls showed evidence of the DNA of this virus. Other evidence shows that the virus is actively expressed in patient cells, is capable of passing from cell to cell, and generates a detectable immune response in patients.

“The brief report lacks information about patient characteristics, and the comparability of patient and control samples, but the data seem plausible and internally consistent.

“However, much more work is needed to determine what these early findings signify. The first and most crucial test would be independent verification, through studies on large numbers of carefully characterised patients at other sites, preferably on fresh, not stored, samples.

“We also need studies on large numbers of both healthy people and people with other conditions. This is to clarify how specific the association is, and the extent to which XMRV occurs in other chronic immunological or neurological conditions.

“Biologically, there is no obvious mechanism that would link this sort of virus (very different from familiar viruses) to this sort of condition, although various plausible hypotheses could be devised. Most importantly, the virus could as easily be an effect of the illness, as it could be a cause or disease mechanism. An altered state of immune cells – from which the virus was derived – could activate an innocent passenger virus, for example.

“For the usual reasons, very preliminary research results have led to much speculation, inevitably raising hopes of people with CFS/ME. Loose talk of clinical tests and therapies based on these findings may reflect a genuine need for such things, but not any clear justification from the published science to date.

“So my thoughts so far are:

. this is interesting, but it first needs independent and substantive confirmation

. we don’t know whether XMRV is cause, effect, or just a passenger

. it would be very premature to think about clinical tests or treatments based on these early findings

. perhaps the most important thing is that this work will foster more high quality research on the biology of this clinically important but scientifically enigmatic condition.”

Professor Tony Pinching, for Action for M.E.  InterAction 70 Christmas 2009

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Commentary on research

Dr. Timothy Luckett’s blog

http://cfidsresearch.blogspot.com/

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Hillary Johnson (journalist and author of Osler’s Web)

13 November 2009

“I’ve written a new blog post about the recent CFSAC meeting in Washington, D.C. and the new scientific terrain created by the discovery of XMRV.”

http://www.oslersweb.com/blog.htm?post=646449

5 December 2009

“When did it stop being about you and become all about them?”

http://www.oslersweb.com/blog.htm?post=648635

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Websites, communities, commentary and quality forums

Dan Moricoli’s ME-CFS Community

http://cfsknowledgecenter.ning.com/profiles/blog/list

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Cort Johnson’s Phoenix Rising website: http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Cort Johnson’s Blog and comments: http://aboutmecfs.org/blog/

Cort Johnson’s Forums: http://forums.aboutmecfs.org/

Link Back

Whittemore Peterson Institute on Facebook

For initial Whittemore Peterson Press Release, NIH (National Institutes of Health) News Release, go here: http://wp.me/p5foE-272

For PDF reprint of Science paper go here:

http://www.sciencemag.org/cgi/rapidpdf/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci

Click here for all previous XMRV Round ups and postings in reverse date order: https://meagenda.wordpress.com/category/xmrv/

XMRV Retrovirus Whittemore Peterson CFS study Media Round up 12

XMRV Retrovirus Whittemore Peterson CFS study Media Round up: 12

WordPress Shortlink: http://wp.me/p5foE-2c2

Media

ABC News

http://abcnews.go.com/video/playerIndex?id=8864348

Good Morning America [ABC] -XMRV

ABCNews 

Click here for interview with Dr. Donnica Moore about the link between the XMRV and ME/CFS

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New York Times

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=2&_r=2

http://tinyurl.com/ykw4msd

October 21, 2009

Op-Ed Contributor
A Case of Chronic Denial
By HILLARY JOHNSON

EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?

XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus – the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

That would have been news enough, but there was more…

Read full commentary by Hillary Johnson, author of Osler’s Web here

While you’re on the NYT site, email Hillary’s commentary to family, friends and contacts!

Hillary Johnson’s website here: http://oslersweb.com
Hillary Johnson blogs at: http://oslersweb.com/blog.htm

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From Martin L. (Marty) Pall, via Co-Cure

21 October 2009

Mikovits and her colleagues published a paper and accessory materials in the journal Science, a highly respected journal and have also provided additional and in some cases more recent information elsewhere. In the Science publication they report that the XMRV retrovirus occurs in about 2/3rds of CFS/ME patients but only in 3.7% of normal controls. They also report that subsequently, using a more sensitive assay, XMRV occurs in over 90% of CFS/ME patients – we don’t know what the percentage is for normal controls using that more sensitive assay.

The virus was originally isolated from some aggressive prostate cancer cells. In addition, in unpublished data, it is also apparently shows high prevalence in fibromyagia patients and in atypical multiple sclerosis (MS) patients.

Comment: These data apparently show that XMRV is not specific for CFS/ME but rather occurs in other disease states, as well as in some normals. My own view is that this makes it much more likely to be an opportunistic disease, caused by the changes in immune function and other properties of these diseases, rather than a primary cause. Specifically, the retrovirus, based on its DNA sequence, has its replication stimulated by NF-kappaB activity, an activity that is elevated as part of the NO/ONOO- cycle and has been reported to be elevated in CFS/ME. Furthermore, the low NK cell activity and other types of immune dysfunction, that occurs in these various diseases,  may also be expected to stimulate the ability of the virus to maintain itself in disease sufferers.

In order to show that it is the primary cause of CFS/ME, it is necessary to show that XMRV follows Koch’s postulates, but so far it does not apparently follow Koch’s first postulate, which requires that it always occurs in people with the disease but does not occur in normals. The other three Koch’s postulates have not been tested.

In contrast to that, we have a good fit to the five principles underlying the NO/ONOO- cycle for both CFS/ME and fibromyalgia. Because one can argue that the fit to these five principles serve very much like Koch’s postulates for NO/ONOO- cycle disease, I will argue that we have a substantially more compelling case for a NO/ONOO- cycle etiology than we do for an XMRV infectious etiology for either CFS/ME or fibromyalgia.

That does not mean that XMRV is unimportant, however. Even if it turns out to be an opportunistic infection, like mycoplasma and HHV-6 are, it still may contribute to the etiology of the disease. And it still raises the question of whether we can cure cases of CFS/ME and fibromyalgia simply by normalizing the NO/ONOO- cycle as opposed to normalizing it and also using antivirals to depress XMRV and/or HHV-6. This is a question and I don’t claim to have the answer to it, although my hope is that normalizing the cycle will also cure at least some of these infections, that may not be true.

There have been comments in the media to the effect that this finally shows that CFS/ME is physiological, not psychological. This is true, but this should have been obviously true anyway, at least six or seven years ago. Nevertheless the media coverage of CFS/ME obtained by Mikovits and her colleagues must be viewed as a true gift to those interested in extending public knowledge of this disease.

Martin L. (Marty) Pall

Dr. Martin Pall’s NO/ONOO- Theory/Treatment Discussion Group: http://health.groups.yahoo.com/group/TenthParadigmSociety

The Tenth Paradigm – Dr. Martin Pall’s Website for CFS/MCS/FM/ETC: http://www.thetenthparadigm.org

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NIH

http://www.nih.gov/researchmatters/october2009/10192009cfs.htm

October 19, 2009

Virus Linked to Chronic Fatigue Syndrome

Scientists have detected the DNA of a retrovirus in the blood of patients with chronic fatigue syndrome. The discovery raises the possibility that the virus may be a contributing factor in chronic fatigue syndrome.

Transmission electron micrograph of round virus particles.

XMRV virus particles seen by transmission electron microscopy. Image courtesy of University of Utah Health Sciences Public Affairs.

Chronic fatigue syndrome, or CFS, is a debilitating disease that affects millions of people in the United States. It’s characterized by profound fatigue that doesn’t improve with bed rest and can be exacerbated or re-kindled by physical or mental activity. A number of other symptoms are also associated with CFS, including cognitive deficits, impaired sleep, myalgia, arthralgia, headache, gastrointestinal symptoms and tender lymph nodes.

No specific cause for CFS has yet been identified. However, patients with CFS are known to have some abnormalities in their immune system. Recently, scientists found evidence of a virus called xenotropic murine leukemia virus-related virus, or XMRV, in the tumors of patients with prostate cancer. Some patients with XMRV-positive prostate cancer were reported to have a specific immune system defect that was also seen in CFS patients. Suspecting a link between the virus and CFS, a team of scientists from the Whittemore Peterson Institute at the University of Nevada, NIH’s National Cancer Institute (NCI) and the Cleveland Clinic set out to look for the virus in blood samples.

The scientists identified DNA from XMRV in the blood cells of 68 of 101 (67%) CFS patients, as reported in the online edition of Science on October 8, 2009. In contrast, the blood of only 8 out of 218 healthy people (3.7%) contained XMRV. Blood cells not only contained XMRV DNA, but also expressed XMRV proteins and produced infectious viral particles.

The researchers also found that XMRV stimulates immune responses in people with CFS. Plasma from 9 out of 18 CFS patients infected with XMRV reacted with a viral protein, whereas none of the plasma from 7 healthy donors showed a reaction.

“These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man,” says Dr. Francis Ruscetti of NCI, who worked on the project.

Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, have been associated with CFS.

The researchers cautioned, however, that while this study found an association between XMRV and CFS, further work will be needed to determine whether XMRV truly contributes to the development of CFS.

“The discovery of XMRV in 2 major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting,” says Dr. Robert H. Silverman, a co-author at the Cleveland Clinic. If a role for XMRV is established, there could be new opportunities for prevention and treatment of these diseases.

Related Links:
Chronic fatigue syndrome:
http://orwh.od.nih.gov/cfs/aboutcfs.html

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Patient community websites and blogs

Cort Johnson’s Phoenix Rising website

http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Cort Johnson’s Blog and comments

http://aboutmecfs.org/blog/?p=990

“A supernova (pl. supernovae) is a stellar explosion. Supernovae are extremely luminous and cause a burst of radiation that often briefly outshines an entire galaxy”. This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out – still an if – one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now…”

Check out “The Potential of XMRV” in the latest edition of ‘Bringing the Heat’ from Phoenix Rising.

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This is ME – rutts tankespinn

http://merutt.wordpress.com/tag/chronic-fatigue-syndrome/

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Previous ME agenda Media Round ups

Round up 12: XMRV Retrovirus Whittemore Peterson CFS study Media Round up 12: http://wp.me/p5foE-2c2

Round up 11: XMRV Retrovirus Whittemore Peterson CFS study Media Round up 11: http://wp.me/p5foE-2bB

Round up 10: Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal):
http://wp.me/p5foE-2bk

Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:
http://wp.me/p5foE-2aQ

Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09: http://wp.me/p5foE-2at

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa 

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L 

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: http://wp.me/p5foE-299

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
http://wp.me/p5foE-28F

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272

Two bloggers: one delighted, one deleted

The State of Me, Nasim Marie Jafry

Edinburgh writer, Nasim Marie Jafry’s debut novel The State of Me was published on 1 July by Harper Collins.

Congratulations nmj!

Nasim has been ill since 1983 and blogs about living with ME here:

http://www.velo-gubbed-legs.blogspot.com  

You can read about Nasim’s book here:

http://www.harpercollins.co.uk/Contents/Title/Pages/default.aspx?objId=44929  

or here:

http://www.hetalternatief.org/Boek%20Jafry%202008%20446.htm

and a review here:

http://insearchofadam.blogspot.com/2008/07/sunday-reading-state-of-me.html

Nasim will be signing copies of her book at Waterstones Edinburgh George Street on Wednesday, 20 August 2008 at 7:30PM

http://www.waterstones.com/waterstonesweb/displayDetailEvent.do?searchType=1&author=Nasim%7CJafry

 

What’s in a name? Dr Simon Wessely

Dr Simon Wessely is a UK GP living with ME who shares his name with that other doctor (now Professor) Simon Wessely who isn’t living with ME but has made a very nice living out of ME.

Simon created a WordPress blog in September, last year at

http://simonwessely.wordpress.com   

A couple of weeks ago, Simon’s blog was taken down by WordPress.

No warning, no explanation.

Simon has created another blog at:

http://meworld.wordpress.com