Friday, January 21, 2011

Is it CFS or ME or XMRV?

First off, my symptoms developed immediately after and as a result of a high fever/virus/stomach flu, so no one is ever going to convince me that it's all in my head. Plenty of doctors have tried to tell me I'm just depressed or anxiety-ridden, but I stubbornly cling to my conviction that it's a physical problem resulting from a virus.
About 5 years ago, I tried to enroll in a clinical trial for a fibromyalgia medication and was given a C-Reactive Protein blood test. The results were 10x higher than they should have been. There's my proof that the root problem is infection/inflammation, and not emotional.
Over the years, the CDC definition of "CFS" has been watered down, and watered down again, and rewritten, and now describes depression more than it describes what I have. But, by CDC fiat, there's no such thing as ME in the US ... you can only get a diagnosis of CFS, not of ME. (A few radical doctors will still give the ME diagnosis, but most of us are fortunate to find a doctor who even takes our symptoms seriously without hoping for an activist willing to make the controversial ME diagnosis.)
And then in October 2009, a miracle occurred. Dr. Judy and Dr. Vince of Whittemore-Peterson Institute published a paper describing a retrovirus -- XMRV -- in CFS patients. How this relates to the virus found by Elaine DeFreitas nearly 20 years earlier is still unclear, but in the months between the paper being submitted for publication and the paper actually being published, Drs. Mikovits and Lombardi developed a more accurate blood test, which increased the percentage from the 2/3 of CFS patients mentioned in the published paper to nearly 100% of CFS patients they tested provably having the new retrovirus. A move is afoot to change the name from XMRV (xenotropic murine retrovirus) to HGRV (human gamma retrovirus) to eliminate the claim that it's just contamination from lab mice ... the lab in which it was discovered was never home to any mice, so that's not possible, which would then provide us a new name for our condition: HGRAD -- human gamma retrovirus associated disease. Sounds a lot more serious than Chronic Fatigue Syndrome, huh?
The original blood test was $650 and not entirely accurate. We've been advising patients to hold off on testing if they can -- obviously, if you need a blood test NOW to submit proof you're legitimately disabled, that's one thing, but if you're just curious about your status, wait until the price comes down and the accuracy goes up. If you plan to try anti-viral drugs, you'll have to have another test, to check your titers, just before you go on the drugs, and another later to verify whether the titers have gone down, so why spend $650 three times if you can get away with spending it only twice?
Rumor has it that a new, more accurate test will be available in the next few months. I don't know whether it's still going to cost $650 or if the price will go down a bit.
What do you get for your $650? A 45-day process in which the virus is grown, identified, and double-checked by multiple XMRV experts. It's time-consuming, and that's why it costs so much, not because someone's getting rich quick off the tests.
I've always said that once there's a blood test for CFS, there's going to be some shake-up in the patient population. Some who were told they have CFS will be juggled over to a more accurate diagnosis of depression or MS. Some who were told they have depression will test positive for XMRV and come over to our camp. I think the total number of patients will be about the same, just that some of the names will be changed as misdiagnoses are corrected.
After years of ranting about misdiagnosis by lazy doctors who don't know (or don't care) what they're talking about, the ultimate irony would be for me to be one of those misdiagnosed. So far, not having had the XMRV testing, all I can say is that the C-Reactive Protein proves it's not just "all in my head"; there's something physical very wrong, so we can dismiss any diagnoses of depression or anxiety or laziness as inaccurate.
Nonetheless, it gave me ammunition I didn't have before to fire back at the accusers (some in this blog) who think that my only problem is that I don't want to work or am in denial because I don't want the stigma of mental illness.
Where this goes from here is anyone's guess. But the most important part for patients is that the genie is out of the bottle and Reeves, Wessely & Co. cannot stuff it back in. Statistically, it takes 17 years for an experimental treatment to become a commonly-accepted treatment, so it'll be 2026 before we can expect XMRV (or HGRAD or whatever they end up calling it) to be on the radar of most doctors; the change will not come overnight. But the crucial first step has been taken.
OK, I'll be pushing 70 in 2026, and a lot of our current activists will be even older (or dead), so it's probably too late for us, but there are younger activists, much younger than me -- Jodi Bassett, Jenni Saake, Andrea Whittemore -- who are young enough to get some benefit from this discovery. Those who are being diagnosed now will not know the struggle we went through to be taken seriously. This is both a good and a bad thing -- some of my younger co-workers were so used to women's equality that they found it hard to believe that the battle was being fought as recently as my generation, and that abortion was still illegal when they were born -- in a way, it pleased me that the change was so rapid that they were completely unaware that what they were taking for granted became so ingrained in society in such a short time. And in another way, it troubled me that they didn't recognize what only one generation earlier had fought tooth and nail to accomplish.
XMRV Bloggerama Day 2010 -- XMRV taken for granted in 2026 -- that'll be a dream come true, even if some of us are not here to see it
LINKS: -- dispelling the myths and providing the facts
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Kati said...

Great job! As more and more patients test positive, more physicians get educated, one way or another, early or late, that ME has always been a legit disease. Governments, prepare for class action suits!

Jenni / Jennifer Saake a.k.a. InfertilityMom said...

Thank you for sharing your story and helping fight for ongoing research. Makes me shiver to think it could take 17 years before current research becomes widely accepted! Thankfully in the first after the release of the 2009 Science paper, WPI moved XMRV research ahead the equivalent of what took the HIV world 6 years to accomplish. It is my fervent prayer that there will be real help available soon enough to help many.
P.S. What a pleasant surprise to find my own name listed right up there with some of the "big league" advocates like Andrea Whittemore!

Nicky Reiss said...

Your perspective would be merely interesting for one not affected by the disease - but it's a tug back down to earth for anyone who is seriously ill. I would really like to get my life back before I'm 72 (although better late than never!). My concern is for all those who are bed-bound now, and who need help urgently. They cannot wait 17 years. I hope things will move a lot faster.

CFS Facts said...

Nicky, we would ALL like to get our lives back sooner than 17 years. With luck, WPI can train doctors in each state so that we can, but it's proven to be 17 years -- one generation of doctors -- before a treatment becomes commonly-accepted by the majority of doctors. So, for now, it's still a matter of finding that one doctor in your area who believes and knows what he's doing. WPI does have a list of who they're training and can give you names in your are.

CFS Facts said...

Jenni, the real "big league advocates" are those of us who've been at it since the 1980s. :) You and Andrea are the next generation, the ones who are going to benefit from the work of the old-timers like me, yet, you're not taking for granted what we did, which is also important to us. It means that when you're speaking to the next generation of leaders, you'll admit that you built on the work of the Mary Schweitzers and Pat Feros and Erik Johnsons, you didn't start from scratch. Our names live on through you and Andrea.

CFS Facts said...

Kati, you're right. We do need to find a lawyer willing to sue the government on a class action suit.

Reality check: in most class action suits, the lawyers wind up with the bulk of the money. Not faulting them -- it's a lot of work and costs a lot for transcripts and copies and overtime (BTDT in my previous life) -- but highly unlikely that it'll be a lottery-sized payout for any of the patients. Still, even if we only get $25,000 each, it's a help.

Jenni / Jennifer Saake a.k.a. InfertilityMom said...

In 1980 I turned 8 and started showing my first signs of a compromised immune system. In 1990 I turned 18, had a full-on CFS crash and became bed-bound. Thank you to everyone in the "big league" who was fighting for all of us before we even had voices of our own to raise. {{{hug}}}

Jennifer said...

I guess there's hope for our 6 year old daughter born with congenital chronic Lyme plus whatever is keeping us sick. Hubby and I were diagnosed with CFS for many years before the Lyme was found. We're a lot better but if we stop the abx, we bottom out. Daughter is recovering from Autism but w/o the abx, she goes backward. We need help. I'm not long here I think. Been sick half of my 35 years...