Thursday, October 29, 2009

Ampligen, the proposed chronic fatigue syndrome drug currently awaiting FDA approval

From Fibromyalgia & CFS Blog, 29 October 2009
By Adrienne Dellwo, Guide to Fibromyalgia & CFS

Chronic Fatigue Syndrome: Dr. Lerner on Ampligen, XMRV

Dr. A Martin Lerner: Thoughts on XMRV, Ampligen

In my recent conversation with Dr. A. Martin Lerner, a former chronic fatigue syndrome sufferer who says he used his specialty in infectious diseases to find treatments for himself and others, I asked him about both the XMRV discovery (which was just days old at the time) and also aboutAmpligen, the proposed chronic fatigue syndrome drug currently awaiting FDA approval.


XMRV is a retrovirus that researchers recently linked to chronic fatigue syndrome (CFS or ME/CFS). Dr. Lerner says that in his patients, he's discovered that 3 viruses are found in nearly everyone with ME/CFS -- Epstein-Barr virus (EPV), human herpesvirus 6 (HHV-6) andcytomegalovirus (CMV) -- and that some patients also have Lyme disease on top of one or more of those viruses.

At the time of our conversation, Dr. Lerner hadn't yet been able to look over the XMRV data but said he was definitely interested in seeing it.

On the surface, it might seem like other research -- especially the XMRV finding -- could disprove Dr. Lerner's theories about EBV, HHV-6 and CMV. However, (and these are my words, not his) that's not necessarily true. If the XMRV findings are replicated and nearly everyone with ME/CFS is infected with it, that wouldn't meant that other infectious agents didn't play a role. Could XMRV make people more susceptible to complications/long-term infection by EBV, HHV-6 or CMV? Could EBV, HHV-6 and CMV make us more vulnerable to XMRV infection? These are all areas that researchers could explore in the future.


Dr. Lerner treats his ME/CFS patients with one of two antiviral medications:

I asked him about Ampligen, which many hope will become the first drug ever approved for ME/CFS. "The science behind Ampligen is sound," Dr. Lerner said. He doesn't use it because it has to be given intravenously, which means patients have to come to the office more often, whereas people can take the other two at home.

Dr. Lerner and I also talked a lot about exercise in people with chronic fatigue syndrome, and he has a very interesting take on it. That's coming up soon.

More on Dr. Lerner

October 29, 2009 at 6:19 am
(1) Mindy Leavell says:

Adrienne, Check out this website.
They say they have a diagnostic test available for XMRV…..?

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XMRV: Reno scientists prepare to address federal health officials

Annette Whittemore, founder and president of Whittemore Peterson Institute (WPI), will also speak at the meeting.

WPI will open a permanent research facility next June at the University of Nevada, Reno, USA.

From News 4 by Victoria Campbell, 29 October 2009:
Reno scientists prepare to address federal health officials
University of Nevada, Reno

Just weeks after a medical breakthrough that pinpointed a virus that may be linked to Chronic Fatigue Syndrome, the doctor who helped lead the medical team is preparing to present his findings to an advisory committee from the U.S. Department of Health and Human Services.

Dr. Daniel Peterson, medical director of the Whittemore Peterson Institute at the University of Nevada, Reno, will discuss the findings before the Chronic Fatigue Syndrome Advisory Committee on Thursday, October 29, in Washington, D.C.

Dr. Peterson has treated patients with Myalgic Encephalomyelitis-commonly known as Chronic Fatigue Syndrome-for more than 25 years. Earlier this month, scientists at WPI identified an infectious retrovirus they called XMRV that could be linked to the devastating condition that affects millions of people worldwide.

Dr. Peterson said the discovery by scientists at WPI holds great promise for patients all over the world.

"I am hopeful about the possibility of providing patients who are positive for XMRV a definitive diagnosis, and hopefully very soon, a range of effective treatment options," he said.

Annette Whittemore, founder and president of WPI, will also speak at the meeting. WPI will open a permanent research facility next June at the University of Nevada, Reno.


Tuesday, October 27, 2009

MEA writes to the Chief Medical Officer - Implications of research findings concerning XMRV and ME/CFS

From the M.E. Association's website by Dr Charles Shepherd, 27 October 2009:

XMRV and ME/CFS: The MEA writes to the Chief Medical Officer

The ME Association has today written to Sir Liam Donaldson, Chief Medical Officer at the Department of Health, about various issues relating to XMRV research and ME/CFS.

Dear Sir Liam
Implications of research findings concerning XMRV and ME/CFS
 I assume you are aware of the new research findings from America, published in Science on 8 October 2009which relate to the retrovirus known as XMRV (xenotropic murine leukaemia virus) and ME/CFS.
The ME Association has produced some information which summarises the research findings and the practical implications they may have in relation to disease management.  Our position statement acknowledges that many uncertainties remain and that further research studies are needed before anyone can conclude that this virus plays a significant role in either the cause, assessment or management of ME/CFS.  We are in contact with several research groups (UK and overseas) who have experience in retroviral research and it is encouraging to note that there is a strong desire in the research community to take this forward as a matter of urgency.  I can supply further information if necessary.  The ME Association summary, which also contains a link to the XMRV research paper, can be found on our website at:
I would also like to draw your attention to two statements that have been issued by the National Cancer Institute in America in relation to XMRV. The first statement, which refers to the research findings, can be found at:  The second statement, which refers to transmission and blood donation, can be found at:  The NCI interim guidelines relating to blood donation in the second statement (>> point 2) are very similar to those contained in the MEA summary, and the issue of XMRV transmission is something that obviously needs to be brought to the attention of the National Blood Service and Health Protection Agency if not already done so.  A clear statement from the National Blood Service in relation to blood donation from people with ME/CFS would obviously be very helpful to people at this time.
If the Department of Health, or the National Blood Service, would like to add anything to the MEA information, which is being updated at regular intervals, we would be happy to include it.
 Yours sincerely
 Dr Charles Shepherd
Honorary Medical Adviser, The ME Association
7 Apollo Office Court
Radclive Road
Bucks MK18 4DF
Formerly a member of the CMO Working Group on ME/CFS
Dr Des Turner MP - Chair of the All Party Parliamentary Group on ME
Countess of Mar - Chair of Forward ME Group
Dr Jonathan Stoye - National Institute for Medical Research
Professor Stephen Holgate - Chair of MRC Expert Group on ME/CFS Research
Professor Tony Pinching - Peninsular Medical School


Friday, October 23, 2009

News round-up: Whittemore Peterson Institute for neuro-immune disease (Update 1)

In The News

October 9, 2009: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome (Science)

View Abstract | View Reprint | View Full Citation

Does a Virus Cause Chronic Fatigue? ABC News, October 19, 2009

Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome(NIH/National Cancer Institute Press Release, October 8, 2009)

Whittemore Peterson Institute Scientists Discover Significant link between XMRV and ME/CFS (WPI Press Release; October 8, 2009) [PDF]

Virus Linked To Chronic Fatigue Syndrome (NPR, October 8, 2009)

Virus Found in Many With Chronic Fatigue Syndrome (, October 8, 2009)

ME virus discovery raises hopes (BBC NEWS | Health, October 9, 2009)

Retrovirus Might Be Culprit In Chronic Fatigue Syndrome (Science News, October 8, 2009)

Chronic fatigue caused by retrovirus, say scientists (Mail Online, October 10, 2009)

'Most cases of chronic fatigue syndrome linked to virus' (Telegraph, October 9, 2009)

Retrovirus May Be at Root of Chronic Fatigue Syndrome (US News and World Report, October 8, 2009)

Retrovirus Linked to Chronic Fatigue Syndrome (WebMD, October 8, 2009)

Study isolates virus in chronic fatigue sufferers (Reuters, October 8, 2009)

Chronic fatigue linked with virus (The Australian, October 10, 2009)

September 24, 2009: WPI Awarded Prestigious NIH R01 Grant
New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome

February 4, 2009: New UNR Center Raises Hopes for CFS Patients
Reno Gazette-Journal [PDF]

Summer, 2008: Whittemore Family Invests in Neuro-immune Institute
Nevada Silver & Blue [PDF]

Summer, 2008: Center for Molecular Medicine Targets Chronic Fatigue Syndrome
Nevada Silver & Blue [PDF]

Healthcare Heroes
Annette and Harvey Whittemore, Northern Nevada, Community Partner

Nevada Business Journal report [PDF; see page 20]

INIP award
September 8, 2007: NCI CCR (Ruscetti)/NIA (Taub) proposal submitted to the Integrative Neural Immune Program's Intramural Research Award competition, entitled "Role of Chronic Inflammatory Stimulation by Active Herpesvirus Infection in Development of Immune Dysfunction and Mantle Cell Lymphoma in Chronic Fatigue Syndrome Patients", unanimously considered by the ad hoc reviewers and the INIP IRA subcommittee as a project that will yield important new interdisciplinary research findings. The award provides a postdoctoral fellow for 3 years to work on the Project with Dr. Ruscetti and Dr. Taub and WPI.

- - -

News round-up from ME agenda

Whittemore Peterson Institute XMRV retrovirus study link with CFS: Media Round up 10

Posted by meagenda on October 17, 2009

Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal): Media Round up 10

WordPress Shortlink:

This is the tenth Round up of media coverage of the Whittemore Peterson Institute XMRV study published, last week (08.10.09), in Science journal.  Round ups also include commentary from patient organisations, patient community websites and bloggers and links for related material.


Press Release:

The European ME Alliance 

Eight-Country European ME Alliance Issues Kudos to WP Institute, Pledges Cooperation
October 16, 2009

The European ME Alliance  is a group of European organizations formed less than a year ago to encourage more ME/CFS biomedical research funding – Belgium, Denmark, Ireland, Germany, Norway, Sweden & UK.

ME Alliance Press Release Oct 16:

The European ME Alliance (EMEA) wish to congratulate the Whittemore- Peterson Institute for the painstaking, professional and groundbreaking work which its staff have performed, along with the National Cancer Institute and the Cleveland Clinic, which has resulted in the publication of the findings of a novel virus XMRV in causing or influencing ME.

The members of EMEA recognize that the staff at WPI are performing research of the highest quality.

The publication of this research in Science magazine is itself an amazing achievement.

This work has been achieved in an amazingly short period of time and the tenacity, dedication and sheer excellence of the WPI has brought hope to millions of people, patients, carers and friends, in Europe and further afield.

EMEA announces its continued full support for WPI and hopes to be able to become a stronger partner in the future.

Signed by all members of the European ME Alliance:

Belgium – ME/CFS Association (Nieuwrode, Belgium)
Denmark – ME-NetDK
Ireland – Irish ME Trust
Germany – Fatigatio e.V.
Norway – Norges ME-forening
Spain – Liga SFC
Sweden – Riksföreningen för ME-patienter
UK – Invest in ME

The European ME Alliance


Tate Mitchell reports via Co-Cure mailing list    16 October 2009

The CFIDS Assoc. just posted some updates on their Facebook page, including a link to an interview with Laura Hillebrand, author of Seabiscuit, by The New Yorker, the Oct. 29-30 CFSAC meeting agenda is published, which is to include a presentation by Dr. Daniel Peterson entitled ‘XMRV Association with CFS’, and CFIDS Assoc. Scientific Director Suzanne Vernon writes about the new XMRV findings”

Oct. 29-30 CFSAC agenda

Interview with Laura Hillebrand




By Suzanne D. Vernon, PhD
Scientific Director, The CFIDS Association of America

The announcement on October 8, 2009, that an infectious retrovirus called XMRV (xenotropic murine-related retrovirus) was linked to CFS, could be the game-changing scientific event we have been waiting for. Whether XMRV provides the long-awaited causal link will depend on the findings described in the Science paper being replicated by another laboratory in another group of CFS patients. To help clarify what we know, let’s review the findings.

Dr. Judy Mikovits and her team at the Whittemore Peterson Institute for Neuro-immune Disorders (WPI) made a very insightful connection three years ago. XMRV was first described in prostate cancer in 2007 by investigators at the Cleveland Clinic, who also reported that XMRV-positive prostate cancer patients have alterations in RNase L, an antiviral immune system pathway. The WPI investigators knew that RNase L activity is also altered in blood cells from CFS patients and they made the decision to look for XMRV in CFS patients with this immune defect.

When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present. Dr. Dan Peterson has been caring for and researching CFS patients since the 1984 Incline Village outbreak, so he identified CFS patients with prolonged disabling fatigue, cognitive impairment, and documented laboratory immunological abnormalities (including altered RNase L activity) to hunt for XMRV.

The WPI laboratory team detected XMRV sequences in 68 of 101 (67%) CFS patients tested and in 8 of 218 (3.7%) healthy control subjects. The Cleveland Clinic confirmed the presence of XMRV in a subset of these same CFS cases, 7 of the 11 (64%) samples from WPI. The Cleveland Clinic researchers found that the CFS XMRV was similar to prostate cancer XMRV, and not a mouse virus (murine leukemia virus) that could have been a contaminant explaining the discovery.

The investigators designed several new assays to understand XMRV. They looked to see if XMRV was expressed in peripheral blood mononuclear cells (PBMCs) of CFS patients. PBMCs from 19 of 30 CFS patients expressed XMRV proteins compared to 0 of 16 PBMC samples from healthy controls. They also wanted to know which cells harbored XMRV; they found it in T and B cells in the blood of one CFS patient. The investigators looked to see if the XMRV from CFS patients was infectious. Both blood cells and plasma (the cell-free fraction of blood) from XMRV-positive CFS patients were able to transmit this virus to a susceptible cell line, indicating infectiousness in laboratory culture. Finally, they wanted to know if XMRV stimulated the immune system to produce antibodies. Plasma from 9 of 18 CFS patients had antibodies that reacted with a virus protein similar to that found in XMRV, compared to no reaction from plasma of 7 healthy controls.

This Science paper tells us that XMRV plays a possible role in CFS pathogenesis in these CFS patients. How much we can generalize these findings to other CFS patient populations? That answer will depend on the results of replication studies.

The design of replication studies should include CFS patients who are similar to those selected by Dr. Peterson and reported in the Science study. Unfortunately, the details about the CFS patients were not sufficient to enable independent investigators to select similar CFS patients. For example, we need to know the age, sex, duration of illness, medical history, and medication use, to name a few characteristics, of the studied patients to select CFS patients who as similar as possible to the original group. We also need to know something about the healthy control subjects, since there is nothing in the paper or supplementary materials that describes how they were selected. Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls. We are actively working with several independent research groups to expedite these studies.

While these exciting studies of XMRV continue, the CFIDS Association continues its support of our funded investigators. It’s important to remember that HIV was discovered to be the cause of AIDS 26 years ago, but worldwide research on AIDS treatment, cure and prevention continues today. Our funded investigators’ research on why EBV triggers CFS, whether ion-channel receptors are markers of fatigue, why CFS patients have higher rates of leaky gut, why CFS patients have slow blood flow to the brain, why CFS patients have metabolic disturbances in the brain, and how we can bring this information, as well as XMRV, together using powerful computational tools are all important as we work together to solve CFS.

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M,  Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.

Supporting online material for Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009.

A new virus for old diseases? Coffin JM and Stoye JP. Science 8 October 8 2009.

Information about the Association’s research program:



Professor Andrew Lloyd AM
Director, Centre for Infection and Inflammation Research University of New South Wales

New Retrovirus – Comments by Professor Andrew Lloyd

©2002 – 2009 ME/CFS Society of NSW Inc. 



RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history…

Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the Cause of Fatigue Syndrome?” – posted online Oct 15, 2009

“But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name Change Movement

Dr. Shelekov looked puzzled and maybe a little skeptical. But Dr. Marc Loveless, sitting next time to him said, “Dr. Shelekov, this man (meaning me) is telling you the truth. I have treated more than 2500 AIDS and CFS patients over the past 12 years. and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life!”

I immediately said to Dr. Loveless that “YOU have to use that line in every speech you give on this illness for the rest of your life!” (in 1994, Dr. Loveless gave this same testimony under oath to the US Congress).


Radio broadcasts

Science Friday on NPR

“Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide from 2-4pm Eastern time as part of NPR’s ‘Talk of the Nation’ programming.”

Podcast:  Virus Tied to Chronic Fatigue Syndrome

Clicking on this link will start download of mp3 Podcast from Science Friday site: 


Patient community websites and blogs

Cort Johnson’s Phoenix Rising website

The news on XMRV is breaking fast and items are being added regularly to the XMRV Resource Center on Phoenix Rising. The Resource Center has links to scientific articles, analyses by chronic fatigue syndrome specialists (check out the video by Dr. Klimas on CFSKnowledge Center), media reports, Q&A’s, blogs and more.

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




Related links

Science and Technology News

Hemispherx Biopharma Finds New Retrovirus in Chronic Fatigue Syndrome

Rochester, New York 10/16/2009 08:55 PM GMT (TransWorldNews)

Hemispherx Biopharma, Inc. (AMEX: HEB) has announced a discovery of a novel retrovirus in Chronic Fatigue Syndrome (CFS). The retrovirus may shed light on the potential mechanism of action of Ampligen, an experimental therapeutic, in CFS. CFS is a debilitating disease of unknown etiology that affects 17 million worldwide…


Fibromyalgia & CFS Blog

UPDATE: Ampligen for Chronic Fatigue Syndrome
Friday October 16, 2009

NEWSBRIEF: We now have an update on the FDA’s much-delayed decision on Ampligen for chronic fatigue syndrome that explains why we’ve been kept waiting for so long….


Links to scientific coverage

Whittemore Peterson Institute Q and A
Whittemore Peterson Institute Press Release
Science News: Retrovirus might be culprit in chronic fatigue syndrome
New Scientist: Chronic fatigue syndrome linked to ‘cancer virus’
Scientific American: Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
Nature: Virus linked to chronic fatigue syndrome
NIH News: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome


Previous ME agenda Media Round ups

Round up 10: Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal):

Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:

Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09:

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: 

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: 

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study:

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media:

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09:

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09:

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Thursday, October 22, 2009

APPG on ME launches legacy paper consultation 22 Oct 2009

APPG on ME launches legacy paper consultation

A consultation on the Legacy Paper for the All Party Parliamentary Group (APPG) on M.E. was launched yesterday (October 22).

The current Chair of the APPG, Dr Des Turner, intends to stand down at the next General Election, due sometime before 3 June 2010. 

Comments on the draft APPG legacy paper should be sent to the Secretariat no later than 19 November 2009. 

The Countess of Mar, who is Secretary of the Group, thanked people with M.E. and Action for M.E. for the work done so far in producing the draft. 

The main speaker at the meeting was the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, who described her own personal experience of M.E. and answered a number of questions. In particular, she reassured people with M.E. that it was not the Government’s intention to change working-age Disability Living Allowance under current care reform proposals. 

Other topics on the agenda included an update on the APPG Inquiry into NHS services, which is expected to produce a report before the next meeting of the APPG, which will take place on Wednesday 2 December 2009. A Minister from the Department of Health would be invited to attend. 

In addition to the Chair, Dr Turner and the Secretary, the Countess of Mar, the meeting was attended by Vice Chairs Andrew Stunell MP and Tony Wright MP (Vice Chairs), plus Bill Wiggin MP and Russell Brown MP. 

Minutes and a transcript of the meeting will be produced in due course.

SOURCE:  Website of The M.E. Association (UK)


MEA statement on retrovirus XMRV and ME/CFS (Version 2)

Revised MEA statement on retrovirus XMRV and ME/CFS
This is a considerably extended and updated version of our first summary on XMRV research.  It includes additional information relating to questions that are coming to the MEA about the research findings, in particular questions concerning possible transmission and spread of XMRV, availability of private and NHS tests for the virus here in the UK, possible treatment of XMRV with antiviral drugs, and volunteering for UK research studies. We also report on a new research study from Germany that has queried the link between XMRV and prostate cancer.

This summary is intended to be a balanced account which not only raises questions but is also very cautious when it comes to drawing any firm conclusions about the role of XMRV at this very early stage in the research.

On Friday 9 October, the front page of the UK Independent newspaper carried a major news item under the heading 'Has science found the cause of ME?' This referred to new research findings from America which indicate that a recently discovered retrovirus, known as XMRV (xenotropic murine leukaemia virus-related virus), could be playing an important role in causing or maintaining ME/CFS. The news item was accompanied by a very supportive editorial about the need for recognition and research into ME/CFS.  These two items can be read here. 
The Independent story was soon followed up by the rest of the UK media, including the BBC.  Most of the news reports gave a reasonably balanced and accurate account of the research.  However, some reports incorrectly inferred that the cause of ME/CFS had now been conclusively discovered and that an antiviral treatment would soon be available.  A selection of UK media reports can be found in the October news archive on the MEA website. 
The actual research paper was  published in the online edition of Science, along with a perspective written by John Coffin (Department of Molecular Microbiology, Tufts University, Boston, USA) and Jonathan Stoye (National Institute for Medical Research, London). 
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome.  Lombardi V et al.  Science  October  8 2009  Abstract: 
A new virus for old diseases?  Coffin JM and Stoye JP.  Science October 8 2009  326; p215  Abstract: 
Additional online data from the study can be obtained if required. 
XMRV has also been found in an American study in men who have prostate cancer.  This was partly why the ME/CFS study was carried out.  However, the most recent study on XMRV in prostate cancer from Germany has queried any such a link and suggested that one possible reason could be a geographically restricted incidence of XMRV infections. 
Lack of evidence for xenotropic murine leukaemia virus-related virus (XMRV) in German prostate cancer patients.  Retrovirology 2009, 6:92.  Available on-line  
These are potentially important research findings that could help with both the diagnosis and management of ME/CFS.  We congratulate all those involved in deciding to do this research study. 
However, a number of questions still have to be answered before anyone can conclude that this virus plays a significant role in either the cause, transmission, clinical assessment or management of ME/CFS. 
The research has demonstrated a correlation between ME/CFS and XMRV – not that it is the causative infection. 
Much more epidemiology and laboratory work now needs to be done to answer the essential points set out below: 

  • Carrying out further and larger studies using different populations of people in different countries with ME/CFS.  This work should include people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity. Research in different countries is vital in view of the conflicting geographical findings relating to XMRV in prostate cancer.
  • Using different international laboratories to test for evidence of the virus.
  • Assessing what, if any, correlation there is between the presence of this virus and (a) severity of symptoms, (b) a clear infectious onset with a known infection, (c) immune system abnormalities, CD4 abnormalities in particular, and (d) various other factors involved in sub-grouping of people under the ME/CFS umbrella.
  • Assessing to what extent this particular retrovirus virus is also present in other chronic conditions, especially those such as multiple sclerosis and lymphoma where viral infections have been implicated as a causative factor.
  • Assessing whether this virus is acting as a benign marker of disease or immune dysfunction, or is a 'passenger virus', or whether it has a role in the actual disease process and development of symptoms.
  • Investigating whether the presence of the virus in healthy people acts as a predisposing factor in the development of ME/CFS (possibly when another infective trigger appears) and/or prostate cancer - rather than being involved in the actual disease process.
  • Investigating what effect, if any, the virus has in healthy people who carry it over a period of time.
  • Assessing whether people with evidence of the virus should be treated with antiretroviral medication, and if so developing a suitable antiviral drug or combination of antiviral drugs.
  • Assessing whether animal model studies would help to increase our understanding of the way in which this virus may infects cells and possibly cause disease.

Until these research findings have been robustly replicated, and we have the answers to some of the above questions, there is no point in asking your doctor to be tested for XMRV.  This is because the NHS does not currently have the facilities to do so and the testing procedures are only being used in a research capacity at present.  But if it does turn out that there is a consistent and strong association with ME/CFS then testing for XMRV would almost certainly have to be made available. 
We are not aware of any private pathology laboratories here in the UK that are able to test for XMRV, or are intending to start offering this test. Private testing is available in some countries outside the UK. 
We know that some people with ME/CFS are now very concerned about the possibility of transmission of XMRV through what are termed body fluids (ie blood, saliva, semen).  However, until we know more about what this virus does in the body it would be premature to start arriving at firm conclusions and recommending all kinds of restrictions to normal daily living.  Remember:  we still do not know for certain whether this is a disease-causing virus in humans and whether it plays a role in causing or maintaining ME/CFS. 
And if this virus was behaving as an 'ME virus' in the way that HIV, another retrovirus, causes and transmits HIV infection, often leading to AIDS, there would be a significant number of sexual partners of people with ME/CFS developing ME/CFS - but this is clearly not the case. 
One simple way of obtaining some early clues about viral transmission of XMRV would be to test for the presence of the virus in healthy partners and offspring of people who have the infection and comparing the findings to a control group of people that have no such link. 
If this virus is also present in up to 4% of the normal healthy population here in the UK (ie around 2.4 million, or ten times the number of people who have ME/CFS), as appears to be the case in America, and it does play a significant role in diseases such as ME/CFS and prostate cancer, there will be widespread and very serious implications for public health, blood donation etc. This could also include vaccination against the virus and treating people who are XMRV positive. But these are complex decisions which can only be made in the light of further research studies. 
In relation to blood donation in the UK, current advice is that people with ME/CFS who have symptoms, or are receiving treatment, should not donate blood.  It would seem sensible in the short term, until we know more about transmission and pathogenicity of XMRV,  to consider extending this restriction to people who have recovered from ME/CFS.  It seems strange that many overseas countries have not followed the UK lead on blood donation and ME/CFS. 
It should be noted that unlike the retroviral infection HIV, ME/CFS is an illness that occurs both sporadically and in highly localised acute geographical outbreaks, often involving closed communities such as schools and hospitals, where there is no obvious evidence of bodily fluid transission.  This fact would obviously question the role of XMRV as a precipitating infection in the onset of the illness. 
In the pivotal Royal Free Hospital outbreak of ME, far more than 4% of a previously healthy population of doctors and nurses contracted an unknown infection at roughly the same time (the hospital had to close due to lack of staff).  This fact would question the role of XMRV as a key predisposing factor if it only occurs in 4% of the population. 
Until we know more about the possible role of XMRV in ME/CFS there is no point in asking your doctor about antiviral drug treatment.  If it turns out that the virus does play a role in causing or maintaining ME/CFS then antiviral drug treatment will need to be investigated.  This will involve clinical trials to test possible drug treatments for both safety and efficacy - a process that normally takes a comsiderable amount of time and money. 
The 2007 NICE Guideline on ME/CFS specifically states that doctors should not use antiviral medication to treat ME/CFS.  This dogmatic position is unlikely to change without clear evidence of benefit in good quality randomised clinical trials. 
The ME Association is keen to progress this research here in the UK through any way we can help.  We have already made contact with virologists who are interested in this virus here in the UK and funding from the Ramsay Research Fund (RRF) could be made available very quickly if we receive a good quality research proposal. 
More information on the work of the RRF can be found here 
Since publication of these results it has become apparent that a number of international research groups are intending to try and confirm or refute the findings.  The MEA has been contacted in relation to four such groups already – two from overseas. This is obviously good news and should help to clear up some of the immediate uncertainties. 
If volunteers are required for any research taking place in the UK we will place an annoucement on the MEA website. 


  • An American group from the Whittemore Peterson Institute, in collaboration with the National Cancer Institute and the Cleveland Clinic, have reported finding evidence of a human retrovirus known as XMRV in blood samples taken from people with ME/CFS. 
  • Using peripheral blood mononuclear cells, DNA (viral genetic material) from the virus was found in 67% of patients (68/101) compared to 3.7% in healthy controls (8/218).
  • The XMRV virus was shown to grow in cell culture in the laboratory.
  • Further studies have found that 95% of people with ME/CFS have antibodies to the virus – indicating an immune response to a recent or past infection.
  • Blood samples were collected from people with what is referred to in the paper as CFS who live in different parts of the United States, as well as from healthy controls.
  • A more detailed, but easy to understand, summary of the XMRV research has been prepared by Dr Suzanne Vernon for the CFIDS Association of America.  This can be read on their
  • The paper in Science does not provide any detailed information about the patient group (ie age, gender, illness characteristics) or control group.  However, a report on the research published in The Wall Street Journal states that 20/101 people in the CFS group also had a lymphoma, a type of cancer affecting the lymph nodes.  Questions have therefore been raised about the inclusion of these patients in the CFS group, as well as the make up of the control group and how these patients were selected.  See commentary from Professor Andrew Lloyd published on the website of the ME/CFS of NSW, Australia:

  • Retroviruses are a small group of human viruses that consist of HIV (causing AIDS) , HTLV-1 (causing T-cell leukaemias and lymphomas) and HTLV-2 (often asymptomatic not yet clearly linked to any specific disease).
  • They were discovered in the 1980s when it became possible to culture T-cells in vitro.
  • They infect CD4 bearing lymphocytes - a special type of immune system cell that is derived from the thymus gland.
  • Endogenous retroviruses (ERVs) are also found in humans and usually cause no ill effects.
  • XMRV is retrovirus that was first described about three years ago in some men who have prostate cancer.
  • It may also be linked to other medical conditions, including fibromyalgia.
  • XMRV is related to a group of viruses that can infect mice.
  • This type of virus is thought to be transmitted through body fluids such as blood, semen and breast milk.  It is not thought to be transmitted through the air - like a flu virus.
  • Testing for evidence of the XMRV virus in blood is currently only available at a few specialised laboratories here in the UK.
  • Demonstrating a link between a retrovirus and ME/CFS does not, by itself, resolve the physical vs psychological debate.  Research studies have demonstrated links between retroviruses and diseases as diverse as autoimmune disorders (which could be relevant to ME/CFS), immunodeficiency diseases, multiple sclerosis, tumours, anaemias and schizophrenia.

The bottom line to this interesting research is that it currently raises more questions than answers. 

  • Does the presence of XMRV in healthy people make them more likely to develop ME/CFS when another infection appears?
  • Does XMRV cause ME/CFS in some cases?
  •  Does XMRV become active as a result of having ME/CFS?
  • Or is it simply an innocent bystander with no role in the illness?
  • Should XMRV be treated?
When we have accurate answers to at least some of these questions we can move forward, if necessary, with testing and treatment. 

We will update this summary as further information becomes available. 
If you want to comment on it please do so via 
Dr Charles Shepherd 
Hon Medical Adviser, ME Association 
Summary 2 dated 22 October 2009 

SOURCE: Website of The M.E. Association (UK)