I 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.

As 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 Coffin said that the Japanese Red Cross did an as yet unpublished study on the Japanese blood supply and found a ‘low incidence’ of XMRV.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

First, 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

The insurance industry is more powerful than the IRS. It sickens me.