And for millions of people around the world who now suffer, or are about to suffer, from a range of debilitating illnesses, what we have learned about XMRV in 2009 could prove to be the most important discovery of the decade. So what is XMRV? It's short for Xenotropic Murine leukemia-Related Virus, and it could be a very bad thing. Just read the ominous title of the 2006 research paper that first brought XMRV to light: "Identification of a novel Gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant" (Urisman A, Molinaro RJ, Fischer N, et al. March 2006, PLoS Pathog). Even the pictures are scary. The one on the left was labeled "XMRV proteins are expressed in cancer cells, as seen in this section from a human prostate cancer. Cells showing brown, granular staining are malignant prostate cells that express viral proteins."
(When I first started to read about XMRV some lines from Sympathy for the Devil, the Rolling Stones classic, came to mind: "Pleased to meet you, hope you guess my name; but what's puzzling you is the nature of my game.")
The nature of the XMRV game is exactly what scientists have been trying to figure out since 2006, and in 2009 they established a strong connection between XMRV and two serious diseases: prostate cancer and Chronic Fatigue Syndrome or CFS (a.k.a. Myalgic Encephalomyelitis or ME).
CFS is a debilitating condition that makes daily life miserable for some 17 million people worldwide. Sadly, the physical misery of CFS is compounded by lingering prejudices that lead otherwise sensible people to dismiss all CFS sufferers as malingerers, attention seekers, mentally disturbed or just plain lazy (often reflected in sentiments like these: "Hey, we all get tired, just suck it up!").
We will return to CFS in a moment, after considering these latest XMRV findings. Here's what Discover Magazine says of the connection between CFS and XMRV:
XMRV is one of only three known human retroviruses, infectious agents that slip into our genome and become a permanent part of our DNA. Cancer biologist Robert Silverman of the Cleveland Clinic isolated XMRV three years ago in men suffering from prostate cancer. The men had an immune defect that allowed the virus to proliferate, much like a defect documented in patients with chronic fatigue. Seizing upon that clue, cell biologist Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, tested 101 chronic fatigue patients. In October she reported that 67 percent of them had the virus, as opposed to only 3.7 percent of healthy people. Tests on another 200 patients revealed that more than 95 percent of people with chronic fatigue carry antibody to the virus. (Read more from the original report...)
So why is Cobb's Blog interested in XMRV? You may remember that the blog got very medical about 15 months ago. That's when my wife found out she suffers from hereditary hemochromatosis (that's haemochromatosis for listeners in the British Isles, a.k.a. Celtic Curse, iron overload, and bronze diabetes).
Whatever you call it, this is a nasty condition that causes iron to build up in soft tissue where it eventually does serious and potentially fatal damage to important bits of your body like the liver, heart, kidneys, and so on. But nasty as this condition is, Thanksgiving 2008 found us giving thanks to the doctor who figured out the hemochromatosis diagnosis.
Why? Because hemochromatosis is easily treatable (for a certain value of "easy"). Once you convince the doctors to bleed you a few times a month the iron concentrations come down and you can keep them at bay with regular bloodletting. What we didn't realize is that before it was treated the hemochromatosis had done some serious damage to my wife's endocrine system.
As a result, she spent all of 2009 in a fairly constant state of pain, fatigue, sleep deprivation, and hyper-sweat. (That last term is not a medical one, but we have yet to find a term to describe this phenomenon--it is to hot flashes as hurricanes are to a misty morning; or put it this way, one of these sweat events can turn a t-shirt into a very damp rag in about 10 seconds, and that can happen several times in an hour.)
2009 was also the year of the supplements: cortisol tables to offset adrenal insufficiency, thyroid tables for thyroid deficiency, and HGH for--you guessed it--human growth hormone deficiency. Yet as the year wore on and the blood lettings continued and iron levels decreased, the levels of these other substances started returning to normal or even excess. Last month the doctors said to taper off all supplements. But at no point during all of this has my wife felt any better. She spent most of the year laid out on the sofa in the living room, unable to handle stairs, unable to manage even basic household chores.
Then, just before Thanksgiving 2009, the doctor settled on a diagnosis: Chronic Fatigue Syndrome. If you've ever been handed this diagnosis you know it's a classic case of good news / bad news. The good news: there's finally an explanation for why, 9.5 days out of 10, you feel like death warmed over. The bad news: there's no cure; treatment is expensive and does not alleviate all the symptoms; many people see no difference between CFS and laziness, so moral support may be hard to find.
Of course, once we heard this diagnosis we started our research. That meant hours of web surfing and the creation of a bunch of new Google alerts (that's when you tell Google to send you an email if there is any news about a particular subject). And that's how we learned about XMRV and the link to CFS. Although CFS was not on our radar when the XMRV connection was first reported back in October, Google noticed the year-end coverage in Discover Magazine and alerted us (thanks Google!).
So where does that leave us? Many people suffering from CFS/ME are hoping their condition is now validated as caused by an outside agent and they can get beyond the "all in your head" syndrome. Obviously, there is fresh hope for new, more effective treatments for CFS/ME. There could also be improvements in the treatment of related conditions like MS, and fibromyalgia, not to mention prostate cancer, which kills 25,000 men a year in America alone. (See this link for more on XMRV and prostate cancer.)
Realistically, there are still way more questions about XMRV than answers. The widespread existence of a previously unknown retrovirus has a whole bunch of worrying implications for the entire population (there are very few retroviruses but the best known is HIV). Scientists are rushing to answer questions like: Is XMRV contagious? How is it transmitted? Is it present in the nation's blood supply? Does it cause CFS and prostate cancer or do those conditions allow it to be contracted?
I will post some more links on these topics when I get organized. I just wanted to put this stuff out there while I had some extra time this New Year's weekend. And to thank those scientists who have been working on expanding our knowledge of this beast named XMRV. Their work in 2009 gives us hope that 2010 will be a better year.
Thanks for your post, Stephen. The XMRV link was such an important discovery for people with ME/CFS and the people who care about them, but I'd guess not many non-afflicted people are even aware of it.
ReplyDeleteI hope your wife and you have gotten the moral support you need. If not? Here's a song you might appreciate, free for the downloading: Everybody Knows About Me. (If it doesn't play automatically, just click play -- it's the first song.)
Stephen... I guess that you also cross this though yourself, but It occurs to me that your wife might potentially have caught the XMRV retrovirus when She got blood transfusions in order to treat her hemochromatosis condition.
ReplyDeleteSomething similar happened in the 70´s and 80´s with HHV6 and HIV. Hopefully is not happening again with XMRV now.
But if in the end they conclude that the blood supply is contaminated, and XMRV is causative agent for CFS, you can very well blame your wife CFS to the CDC in the US, which as not invested any money on research of CFS.
Budget for CFS in 2010 is $3 million. For HIV is $3.000 million. Even now that XMRV is out of the closet, public funding is not released.
Here is an informative video of XMRV:
http://www.youtube.com/watch?v=HY5Ph_9pL5g
Thank you Xand, but she did not receive blood transfusions. They actually perform blood letting. But I do agree that many serious diseases do not receive the funding they need or deserve. Stephen is my father and although I no longer live at home I do see the severe pain my mother goes through. It makes it harder when there is nothing you can do....so the only thing we have left is to speak on her, and others, behalf so that the word gets out there. Thank you for caring enough to respond and thank you for the information.
ReplyDeleteXMRV is one of two Retroviruses that have been known to the Centers for Disease Control (CDC) since the late 1970's when many outbreaks (large and small) occurred. Retrovirus research however, was not allowed and actually discouraged by the CDC for very political and economic reasons. At the highest levels of the CDC, the insurance companies got involved and insisted that CFIDS/ME was NOT to be validated as a true physical disease but instead, as a mental disorder most often seen in middle-age neurotic women. This was done because of the financial toll the insurance companies would take if they were forced to pay out for long-term disability to those millions of CFIDS/ME sick. For the last 30 years, the CDC has done everything in its power to demean and damage the validity of CFIDS/ME and in doing so, has allowed millions of people worldwide to become deathly ill and remain deathly ill - until they die from heart disease, gruesome cancers, and suicide. The CDC is also the cause of possibly two cancer-causing Retroviruses being allowed to remain in the nation's blood supply for the last three decades. How many millions of people have become sick with CFIDS, cancers, and other diseases because of blood transfusions? The XMRV virus and the DeFreitas Retrovirus (mid 1980's, research killed by CDC) are proving to be as deadly as AIDS/HIV was before billions of dollars were spent on the AIDS/HIVstudy, cause and "cure". It is curious that both the CFIDS/XMRV/Retrovirus and the AIDS/HIV Retrovirus were in time synch but yet the CDC and all other health organizations chose to back AIDS/HIV rather than spend a few million dollars on CFIDS/ME. So, because of internal politics within the CDC and the assault of the insurance companies, XMRV, the DeFreitas Retrovirus and CFIDS/ME (and cancers, other diseases) have been allowed out into the public where transmission is highly contagious and does include air borne transmission and not just blood borne transmission (which would be bad enough).
ReplyDeleteMany in the CFIDS/ME community along with those involved with cancers, autism and other diseases have requested Congressional investigation into the CDC's role in allowing not one, but two deadly Retroviruses out in the public for 30 plus years. This is beyond criminal and when the CDC scandal is finally exposed, the screams from the American and worldwide public will be so loud that the CDC may just crumble away. Google and read the thousands of research studies on CFIDS/ME and now the two newly discovered Retroviruses and see how the CDC played with human life - all in the name of politics and money.
Oh, dear! This blog and its comments strike as both hopeful and terribly discouraging. The hope was sufficiently stated by Stephen. The discouragement comes from the comments, specially Xand and Dr. White's. It is not the first time we found that the government -any government- has been manipulating life-saving research and funding for political and economical reasons that benefit only a few greedy people. Thanks god -and science- for the technology that nowadays allows us to get to know this facts in time to act. Thanks for Google and computers and blogs and emails.
ReplyDeleteOn the other hand, SHAME on journalist who fill out football fields worth of "news"papers and bits and bits of memory in media websites with nonsense while leaving important NEWS like this out. Who cares how many lovers some famous person had when the knowing what's happening with XMRV could save millions of lives? Perhaps we should go back to reading P.Bourdieu when he said the media gave us -as citizens- not what we needed to exercise our rights and duties as citizens but instead to keep us "entertained", distracting our attention from what it is really important.
Also, SHAME on the politicians who are selling out their constituents health and well being for the money to pay for their next campaign so they can remain comfortably seated in their own little -or not so little- throne of power.
Now to the important part: Stephen, Chey: what can I do to help? Email me about what you need and you got yourself a "research associate" down here...
May 2010 be really better...with a little push from us ;-)
Great comments. Dr. White: A big nod. In 1996, Hewlett-Packard's insurance carrier United Health, specifically excluded CFS and FM from receiving any long term disability benefits. Long story short, in January 2002, I left the company with nothing in benefits, save an agreement I made under duress not to talk about it, or ever apply for work again with HP, for a sum of a few thousand dollars that was gone in 2 years trying to find a cure.
ReplyDeleteThe insurance industry is more powerful than the IRS. It sickens me.
Hi Stephen,
ReplyDeleteThanks so very much for this post. I found it through a link that was posted on the CFS forums at Phoenix Rising. I had previously never heard of hemochromatosis, but have been ill with "CFS" for 6 years, and one of my weirder symptoms is a bronze-ish hyperpigmentation in patches on my face, which I was amazed to learn is a classic symptom of hemochromatosis. Thanks to you I am going to look into this more.
Best,
Naomi
A big thanks to everyone who has commented. I was not expecting the amount of attention this post has received. I will try to respond to some of the comments here but will also be writing another post on the subject soon as I get a chance.
ReplyDeleteFirst, I want to thank my daughter (Erynne) for her input and sentiments, which are much appreciated. She had replied to Xand XMRV about hemochromatosis treatment. Although her mother (my wife) was treated by blood removal (phlebotomy or what used to be called bloodletting) and not by blood transfusion, I do think Xand raises a very important point.
I believe that--as Xand implied--there are some hemochromatosis treatments that do involve blood transfusion and, until we have a much better understanding of XMRV, it would seem prudent to be concerned about transmission of the virus via transfusions (as well as possible contamination in blood handling, needles, etc.).
I am by no means an expert on our nation's blood supply, but as far as I can tell in my reading, blood banks have not been screening for XMRV. (If you can add any data on this it would be much appreciated). So if it turns out that XMRV causes CFS or FM or any other disease then we will have a huge problem to deal with.
As for the topics referenced in the comments that Dr. White supplied, it seems I have a lot of catching up to do on the issues surrounding the CDC's handling of CFS and the various forces at play, like health insurance companies, government health programs, drug companies and good old-fashioned professional egotism. My cursory reading of CFS-related blogs today clearly indicates a huge level of dissatisfaction with the agency's handling of CFS.
And my heart goes out to CFS sufferers like Katieann and Naomi. It takes a ton of true grit and determination to keep going when you have this condition. I would be the first to admit that, in the past, I too have been somewhat skeptical about CFS. Not any more. Whether or not it turns out to be caused by XMRV or merely indicated by XMRV, CFS is a very real and very daunting condition, one which our country seems ill-equipped to handle.
I should stress again that I am not a medical expert, and I am NOT saying there is a link between hemochromatosis and CFS or XMRV. However, hemochromatosis can have a negative impact on the immune system and some doctors have theorized that a weak immune system allows or enables CFS. This may be how the classic onset of CFS after a really bad bout of "flu" fits in (about 18 months before we discovered the hemochromatosis, my wife was hit with what she described at the time as the worse flu ever).
Addressing Naomi's issue of bronze skin, I would definitely talk to your doctor about hemochromatosis, but review some of the following questions beforehand: Do you have Celtic ancestry? Do you have a family history of liver and/or heart disease, among your siblings, your parents, or their siblings? Have you recently hit menopause? Have you had severe and protracted joint pain? I would say that an affirmative on any of these, combined with the bronze skin, could help convince your doctor to take this seriously.
Finally, my thanks to Socco for her input and concern (I will email you Socco). I have to say that one of the most frustrating things about caring for someone with CFS is the lack of things you can do to help, ergo, you feel helpless. The lively, vibrant, dynamic person that you knew is suddenly reduced to bed rest for days at a time, but even that bed rest is not restful.
Let's all hope that, as several people have suggested, the new light cast on CFS by XMRV will lead to a cure, or at least new treatments and more widespread understanding of this illness.
Stephen
I think everyone has got their google alerts set to 'XMRV', that's probably why you're getting so much traffic!
ReplyDeleteAs to the blood supply, at the recent Dept. of Health and Human Services Chronic Fatigue Syndrome Advisory Committee meeting, Dr. John Coffin, a retrovirologist with 45 years experience, was invited to speak on the recent XMRV findings. I think you can find the videos already split up by topic on youtube, or the whole thing is available on the CFSAC website. Dr. Coffin said that the Japanese Red Cross did an as yet unpublished study on the Japanese blood supply and found a 'low incidence' of XMRV. As far as I'm aware, two seperate studies have found XMRV in around 4% of 'healthy' controls. The thing is, no one knows if they're really healthy, ie asymptomatic carriers, or just haven't got sick yet. Dr. Jerry Holmberg, head of the blood supply, also spoke at the CFSAC meeting.
The CFIDS Association let it be known that there is a federal task force set up to study the issue of XMRV in the US blood supply, with an official statement not been made yet. I think they're trying to be low key about it to prevent panic before they even find out whether XMRV is in the blood supply or not.
From the CFIDS Association-
"In more recent communications with Dr. Holmberg, he stated that the Blood XMRV Scientific Research Working Group is taking a three-stage approach to its handling of the issues related to XMRV and the possible link to human disease. The first stage will be to standardize and validate laboratory methods and reagents for XMRV testing. This is important since variations in sample collection and laboratory procedures can produce discrepant results. These standardized approaches will be used initially to test 1,200 healthy donors’ blood samples and 100 CFS patients’ blood samples collected by Dr. Judy Mikovits of the Whittemore Peterson Institute. Stage two will assess the prevalence of XMRV in the general population and blood supply, as well as in other CFS patient cohorts. The third stage will be a series of studies to understand how XMRV is transmitted, whether it causes human disease, and how it affects various subgroups of the population."
http://www.cfids.org/cfidslink/2009/120203.asp
As for the CDC and CFS, I think anyone who's interested would be well-served to read 'Osler's Web', by Hillary Johnson. It's a tour de force; really well done. The CDC diverted millions of dollars appropriated by Congress specifically to study CFS and instead spent it on other programs, office supplies, etc. The GAO and Congress both got involved and did a whole lot of nothing, reassigning the people involved, etc. The director of the CDC, who wasn't even with the CDC when this happened, had to step down as a sacrifice and the money had to be repaid to the CFS program but nothing really changed. CDC's approach to CFS for the past 30 years has been that CFS is nothing more than a form of(or different name for) psychoneurosis.
This attitude continues to this day, with Dr. William Reeves, head of CDC's CFS program, appearing on Georgia public tv and saying that CFS occurs as a result of stressful divorces and is due to 'Women being treated differently in society than men are' which results in 'different stress patterns' experienced by men and women due to 'women or men’s roles and how they’re functioning in their different parts of society'.
http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm
Please everyone hit the website/blog by Hillary Johnson at www.oslersweb.com and read a great summary of the history of CFIDS and the CDC. Ms. Johnson also has written a monster of a book (1996 and updated) that details the whole history of CFIDS, the CDC and all the rest of the major players - including the wonderful Drs. Cheney and Peterson. Johnson's book is also titled Osler's Web. It is well researched and took her many years and something like 10 or more maxed out credit cards to get the full story. The book has stood the test of time and much of what she has written is still applicable. It is a "history" book on CFIDS but she also nails the Retrovirus(es) that were found and understood to possibly cause or be part of a cause for CFIDS. Get her book as it is well worth reading especially in light of the new XMRV discovery and the ongoing damage caused by the CDC directed at CFIDS from the very start. MW
ReplyDeleteDear Stephen,
ReplyDeleteI thank you for your research on the XMRV, as I have a friend who told me he thinks I have it. But, I explained, I don't know how the virus would be contributed to Hemochromatosis. Now, I know. You confirmed there's a possibility of the two being related. I am sorry about your wife suffering, as I also have hemochromatosis. It took several doctors and years of trying to figure out what was wrong with me and then I found a Doctor who said we could check the liver with a biopsy. Yes, definitely, it proved to be hemochromatosis. That was in 1992. Since then, I have been getting phlebotomys consistently and my organs and joints and body has suffered greatly with other symtoms from the disease. I now am dealing with chronic pancreatitis, memory problems, CFS, high blood pressure, arthritis, you name it, now my kidneys are at a stage 3. I see a Kidney Specialist in two weeks. I've had pain everyday of my life and I thank God for helping me through each day. I believe God has given Doctors and people such as you, wisdom to follow through and find out what's going on. It's no fun. I've never been tested for this virus, but, will mention it to one of many of my Doctors. They may blow me off, as it is in the mind deal. I continue to walk, work (as much as I can), some exercise and watch my eating habits. Everyone in my family was tested for hemochromatosis, except my father who had passed, and no one had it. It attacked my gallbladder and that was disceased and removed and continues to work its way through my body. I pray one day, people like you will find a way to use the blood they take and be able to give it to patients that need iron. More testing. If there's anything I can do to help the research, I'm here. I won't go on, as I'm sure you are swamped. I'd be happy to talk with your wife as a support system for both of us. I know we have similar conditions. I thank you for all you do and the other researchers and will continue to pray for God to give you all wisdom. Thank you and God Bless you and your family.
Cynthia -- Sorry to take so long to respond. The blog has been experiencing technical difficulties. Also, I have been very busy setting up a new blog just for the stuff I am writing about Hereditary Hemochromatosis. It is called CelticCurse.org and I am building a collection of links there, pointing to information you might find useful.
ReplyDeleteI am so sorry to hear of all your troubles. And I am angry to hear yet another case of a doctor telling a woman it is all in her head. Like my wife says: NO! It's all in my body, that's where pain is, and that's where the iron did so much damage, all because the doctors who treated me for various ailments between 1998 and 2008 failed to figure out the root cause.
Sadly, you are not alone experiencing these problems. And tragically, so much of this could be prevented by greater awareness and understanding of hemochromatosis. Over time I hope to do my part to create that greater awareness and understanding of hemochromatosis that we need so badly.