CFS and XMRV

[torquill]

I've been avidly following the news about a possible link between Chronic Fatigue Syndrome and xenotropic murine leukemia virus-related virus (XMRV). It's good and bad news -- good that I may have something I can point to as a cause, bad because it's a retrovirus. Do I have it? Will there be any viable treatment? Could I have exposed my partners to it? We don't know exactly how it spreads yet, though sexual transmission is thought to be possible, and tests for it aren't readily available. The thought that I might have exposed people I love to a virus which causes cancer is frightening.

While reading this NYT opinion piece*, however, I learned something about the debut of CFS to the medical consciousness:

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

This makes so much sense -- and makes me so angry. It shows how preconceptions in the medical field can ruin lots of people's lives over decades (Chronic Lyme is another example). Patients have been dismissed, doctors have been flagged as quacks, research simply hasn't been done because this wasn't a "real disease". We're decades behind where we should be in finding causes and treatments for it.

I'm glad researchers are finally really looking into it, but the body count has been horrendous. I hope the investigation into XMRV yields something useful, and I hope that the search for other causes and factors continues as well. We need answers.


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Comments

[unseelie23.livejournal.com]

This reminds me of much the same thing that occurred with "Gulf War Syndrome". It's amazing how much damage can be done just by refusing to call something a disease.

[foogod.livejournal.com]

Actually, per my current understanding of medical terms (mind you, I'm not a doctor), "syndrome" is the more correct term in both cases.

"syndrome" generally indicates a collection of symptoms which appear to be related but for which a cause has not yet been determined. "disease", more specifically, is usually reserved for a collection of symptoms or biological changes which are the result of a specific, and identifiable cause.

The fact that "syndrome" has been marked with the stigma of "not really a disease" in many circles (including, unfortunately, many medical circles) is the issue that really needs to be addressed. Ultimately, it's arguable that it's the syndromes that doctors should be more worried about than many of the diseases, because the term "syndrome", properly used, has a built-in implication of "we don't know as much as we should about this"..

[knaveofhearts.livejournal.com]

I wonder what a graph of money-spent-on-AIDS-research over time would look like before and after HIV was identified as the cause.

[luna-torquill.livejournal.com]

What irritates me is that the people in question knew about that stigma and still intentionally used the term -- apparently as part of their dismissal of the "hysteria". Same with Gulf War Syndrome. It's unfortunate that we don't have a term which serves the same purpose and is taken more seriously, but perhaps that reflects some underlying prejudice in the medical community -- that things you can see, isolate, and identify are taken more seriously than things with no obvious single cause.

I agree with you that syndromes should get more attention in an effort to solve the puzzle. I think we may, finally, be getting some movement there... perhaps it can be ascribed to bioscience's recent shift toward whole-system approaches such as genomics and proteomics, which makes multiple causes or small genetic correlations much easier to get a handle on.

[foogod.livejournal.com]

Frankly, in my opinion, it's all just one symptom of a larger ..err.. syndrome, I guess, within the medical community: "if we can't fix it, it's not important"

This is the same reason that psychological issues are not considered "real diseases" either, despite the fact that the symptoms they produce are just as real and in many cases just as debilitating to the people suffering from them. (which is one of my pet peeves: just because there isn't a pill or a surgery for it, doesn't make it not real)

In my opinion, it's also part of the reason why the medical community is so uber-fixated right now on heart disease: "hey, here's a disease we actually understand! Let's focus on that one and ignore all the other stuff we don't have answers for!" (never mind that "focus" translates into "chastise all our patients into anorexia to get a 5%-reduced risk of heart disease")

I think part of the problem is that most doctors aren't scientists, but they think they are, and we treat them like they are.

[makellan.livejournal.com]

That is somewhat terrifying. Hopefully good research is being done?

[luna-torquill.livejournal.com]

I'm encouraged by the statistics for female-to-male transmission of AIDS, which are almost infinitesimally low without contributing factors which I don't have. I haven't given blood since coming down with CFS, for various reasons, and I'll continue to hold off now. I'd love to get tested, and I'll mutter at my PCP when I get back to school about whether it would be possible to get some of the PCR primers from Stanford or UCSF... but at least I feel more confident that if I do have it, it's unlikely I gave it to anyone else.

The high profile of this study brought the subject to many people's attention, and that often results in a flurry of activity in research labs. We'll see what comes out in two years, or less if someone revisits the old '90's study with a new eye.