Questions & Answers: Alphabet Soup

This question & answer moved over from my formspring account.

So what’s the alphabet soup of your disease about? There are a lot of names.

There are. Let’s work backward, shall we?

The most recent positive paper (Alter/Lo) found the presence of “P viruses” – retroviruses in the family called Murine Leukemia Virus-related viruses. Alter and Lo apparently did a slightly different test than the previous study.

The previous study (Mikovits, et al) had found “X viruses” – XMRV – which is also a member of the MLV-related family.

Both are gammaretroviruses.

Now, going back another step:

The name “Chronic Fatigue Syndrome” was coined in 1988 by a panel at the CDC. In the U.S., the illness is thought to have emerged in the 1980s in several outbreaks, including Incline Village, NV and Lyndonville, NY. There is an entire book about this very much in the vein of And the Band Played On called Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.

But the illness already had a name: It’d been called myalgic encephalomyelitis (meaning pain and inflammation of the brain and spinal cord) in England since a major outbreak at the Royal Free Hospital in London in the mid-1950s, where it struck a number of doctors and nurses. It was also called Royal Free Disease.

Now, what will it be called going forward? There are a number of suggestions floating around: If it’s not all caused by XMRV, but multiple MLV-family viruses, will we call each by its name? Will we just call them gammaretrovirus, GRV for short? That’s what my doctor, Paul Cheney, is calling it right now, and I’m inclined to go along.

This entry was posted in ME/CFS, q&a and tagged . Bookmark the permalink.

5 Responses to Questions & Answers: Alphabet Soup

  1. Tina says:

    Well, we don’t know. But it will likely follow the HIV model. Some threshold will be established as to when someone is just a carrier and when someone has disease because of it.

    But, since some diseases already exist, I wonder if it will be something like:

    X-related prostate cancer
    or X-related ME/CFS.

    Interesting, huh.

  2. Jace says:

    Myalgic Encephalomyelitis is such a good, descriptive name. Add the retroviral marker and we get … MEX? MEG? Sounds friendly!

    Thanks for blogging, NoPosterGirl. I know how much brain space setting up and running a blog takes, because I’ve failed to do it a couple of times now 😉

  3. Pingback: Happy Blogiversary to Me | No Poster Girl

Leave a comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s