Now we can get down to business : reactions to XMRV

Now we can get down to business...
Some international reactions to XMRV and ME

Greg Crowhurst Oct 19 2009
(may be reposted)

"It's a Brave New World for Chronic Fatigue Syndrome" Paul Cheney, MD

XMRV - the findings :

Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases. Our work suggests, but does not prove, that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.

A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia.

Whittemore Peterson Institute http://www.wpinstitute.org/xmrv/xmrv_qa.html

These are clearly important research findings that could help with both the diagnosis and management of ME/CFS, and we congratulate all those involved.

ME Association

http://www.meassociation.org.uk/content/view/1042/161/

XMRV : a demarcating point in the history of this illness.

The discovery of the XMRV retrovirus in most chronic fatigue syndrome (ME/CFS) patients appears to be a demarcating point in the history of this illness. The publication of the study in Science, the most prestigious scientific journal in the world, by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute prompted a flood of stories across the major media outlets and scientific publications including Nature, Scientific American, the New York Times, (two articles), NPR, Fox News, LA Times, etc.

Amid concerns that the blood supply was contaminated the NIH officials announced they'd already held a conference on the issue. The Whittemore Peterson Institute rapidly conferred a new name for what it believes are a cadre of XMRV diseases - XAND (X Associated Neuroimmune Disease).

Phoenix Rising http://aboutmecfs.org/Rsrch/XMRVIntro.aspx

XMRV : the observations fit

What has caught the attention of the scientific world is that these observations seem to fit neatly, at least at a first glance, with what is already known about ME/CFS as a chronic illness. For example, viruses related to XMRV have been reported to be involved in damage to blood vessels and nerves, and natural killer cells (historically low in ME/CFS) are said to be susceptible to infection by XMRV. Also, the fact that retroviruses like XMRV are known to be able to activate some other (latent) viruses might explain why ME/CFS has been associated with a range of different viral triggers, such as herpesviruses like Epstein-Barr, over the years. Again, as Dr Judy Mikovits and colleagues point out in their paper, some of the most commonly reported features of ME/CFS include neurological symptoms and immune dysfunction with inflammatory cytokine and chemokine upregulation, and some of these observations could be accounted for by infectious XMRV in lymphocytes. The fact that such pieces seem to fit so well together is suggestive only at this stage, however, and a virologist at Tufts University was surely wise to say in New Scientist that while it’s not impossible that infection with this agent might cause a disease with neurological and immunological consequences, we don’t know for sure as yet.

ME Research UK

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

XMRV : Holy smokes!

Holy Smokes. Just when I want to retire this comes along. How am I going to get any peace and quiet? ….For many years ME/CFS has been limping along on complex science that points to mechanisms of illness that most physicians have ignored. Limped along with skeptical specialists, medical establishments, government agencies. Limped along despite attacks by disability companies. Now we can get down to business.....I would think of XMRV as the "puppet-master". It is known to be linked to prostate cancer; it lurks in the shadows and pulls certain strings causing cells to become malignant. Perhaps it pulls another string to cause EBV to be more active, or Lyme, or enterovirus? Another string to alter RNAse L? Many, many questions open up.

Dr David Bell http://www.davidsbell.com/PrintLynNewsV6N2.htm

XMRV : A game changing scientific event

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.

Suzzane Vernon Scientific Director The CIFDS Association of America

http://www.cfids.org/cfidslink/2009/110402.asp

XMRV : a swell of jubilation

In the ME/CFS community, since yesterday, there has been a swell of jubilation. This may seem odd to a lot of people considering that researchers just found something in our blood similar to HIV. None of us are shocked by this news because we've always known we had something like HIV, something serious and deadly, but we have had to face a surreal social gaslighting while simultaneously weathering the horror of a terrible, life-destroying illness. Dr. Mark Loveless once said that an ME/CFS patient feels every day significantly the same as an AIDS patient feels two months before death. Now that statement holds more weight: ME is to AIDS what vegetative is to death.

The discovery of a new retrovirus called XMRV in ME patients is the biggest news in the history of the ME epidemic (and yes, I'm fully claiming the term ME now, as all "CFS" patients can do, now that as Hilary Johnson says "Our Vietnam War Ended Today" and we can strip the shackles of this government's attempts to squelch, misname, deny, and otherwise ignore our epidemic). News of the ME/XMRV connection has spread around the world like wildfire. Stories have appeared in just about every major media outlet. ME/CFS lists are buzzing. Patients who have written about our lives, screamed about these horrors, fought for medical attention, and died due to medical and social and governmental ignorance and suppression now have our day.

Peggy Munson

http://peggymunson.blogspot.com/2009/10/mecfs-and-retroviral-elephant-mecfs-and.html

XMRV : Hope and Speculation

As someone who has wrestled with Chronic Fatigue Syndrome for 17 years, I've gorged myself on recent headlines about the retrovirus XMRV. I've reminded myself it's too soon to know what it means for me and the vast, beleaguered CFS masses. Still, hope and speculation persists.

In one study, 95% of CFS patients showed XMRV antibodies, and 4% of the healthy controls. Elsewhere, 67% of CFS patients had XMRV. So did 3.7% of the controls.

This suggests then, that not everyone with CFS has XMRV. And maybe some healthy people carry this retrovirus.

So, maybe I don't have it. Maybe you don't. This information may be of no use to us personally.

Maybe, maybe, maybe ...

Nevertheless, it lends weight to the fact that real physiological havoc is indeed taking place in the bodies of people with CFS. That in itself is good news.

I'm repeatedly surprised by those declaring there's nothing wrong with us physically, that it's all in our heads. A little therapy, some antidepressants and getting off our duffs, and we'll be right as rain. That this is depression and we should admit it and get on with things.

Jody Smith

http://www.empowher.com/news/herarticle/2009/10/15/retrovirus-xmrv-and-hope-chronic-fatigue-syndrome?page=1#comment-33611

XMRV : ME patients have never seen anything like it

The Big Picture - ME/CFS patients have never seen anything like this. And in fact it isn’t all about them. Among the stranger findings emanating out of the Whittemore Peterson Institute is the fact that this retrovirus, which had heretofore been associated only with prostate cancer in some neurological diseases was founded on most 4% of the healthy controls blood. This suggests that about 10 million Americans could be carrying a ticking bomb. It also suggests that anyone who’s having a blood transfusion could be at risk. Those two things got enough of the National Cancer Institute’s attention that it quickly convened a workshop in August on how to deal with this problem.

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

XMRV : answers are starting to arrive

Ultimately, what does all this mean? Only time will tell. But I, among many, am incredibly hopeful the answers are finally starting to arrive.

Laurel http://dreamsatstake.blogspot.com/2009/10/cfs-linked-to-retrovirus-xmrv.html

XMRV stands for:

• Xenotropic

• Murine leukemia virus

• Related

• Virus

So, essentially, it's a virus related to a virus that causes a type of leukemia.

The term xenotropic means: xeno=foreign, tropic=growth. Basically, these viruses don't replicate or cause problems in their original source, but are a problem in other sources. Some species are naturally resistant, but others are not. This particular virus apparently originated in mice.

A retrovirus is one that inserts its DNA right into your cell's genetic makeup. In cancer, researchers believe tumors result when retrovirus DNA is put next to a gene that regulates cell growth. I don't see anything in the published ME/CFS paper to suggest that scientists know exactly where the DNA is inserted in this condition, but I imagine that will be a major area of exploration as this research continues.

Adrienne Dellwo http://chronicfatigue.about.com/b/2009/10/12/xmrv-retrovirus-linked-to-fibromyalgia-chronic-fatigue-syndrome.htm

XMRV : I found myself in tears

I think that most ME/CFS patients have heard the announcement from the Whittemore Peterson Institute about the discovery of a retrovirus implicated in ME/CFS and written up in a major scientific journal. I have posted links at the bottom of this post for those that want to read about it. There are also articles in the New York Times, Wallstreet Journal, NPR, and every major newspaper in the country. Yesterday when this was finally announced I found myself in tears as I scrolled through all the news agencies covering this story. It's big news for those of us that suffer from this disease. The mistreatment we have suffered at the hands of disbelieving doctor's, friends, and family members is about to end. Within the next year there it is likely that there will be a diagnostic test for XMRV.

http://stanford.wellsphere.com/lyme-disease-article/chronic-fatigue-syndrome-is-over-xmrv-virus-discovery/830871

From the NHS : Does a Virus cause ME ?

The front page of today’s Independent asks whether scientists have found the cause of ME (myalgic encephalitis), also known as chronic fatigue syndrome (CFS). The newspaper reported that researchers have found a “strong link” with a retrovirus called XMRV.

This study compared blood samples from 101 CFS patients with samples from 218 people without it. It found evidence of the XMRV virus in about two-thirds of the people with CFS and less than 4% of people without the disease.

These findings alone do not prove that the virus causes CFS, because they do not show whether the infection occurred before or after CFS developed. The research paper is cautious in its conclusions, saying that XMRV “may” be a contributing factor to CFS, but the opposite may also be true: CFS may make people more susceptible to infection with this virus.

Despite these limitations, these findings will be of interest to the research community, doctors and patients. Larger studies and research that establishes whether the XMRV infection occurs before or after the onset of CFS will be needed before any conclusions can be drawn.

NHS Choices http://www.nhs.uk/news/2009/10October/Pages/Does-a-virus-cause-ME.aspx

Most cases of chronic fatigue syndrome linked to virus'

Most cases of chronic fatigue syndrome or ME may be linked to a virus, according to research that could lead to the first drug treatments for the disorder that affects millions around the world.

Daily Telegraph Oct 9 2009 http://www.telegraph.co.uk/science/science-news/6276718/Most-cases-of-chronic-fatigue-syndrome-linked-to-virus.html