"When the body is rendered useless..."

From The Sound Of A Wild Snail Eating, as featured on NPR's Weekend Edition. The quote is too long for Twitter or Facebook, but so lovely I just had to post it somewhere. So relate to the mind running "like a bloodhound" or being "flooded with storms of thought, unspeakable sadness, and intolerable loss" as well as the way time is both painstakingly slow and instantaneous at the same time. The discussion at NPR also reminded me of my desire for a terrarium. Some connection to the forest that I miss so much.

When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how. The search is exhaustive; the answers, elusive. Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness, and intolerable loss.

Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties. It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.

Did Alter alter much?

No energy for a thoughtful, analytical post. But here are a few thoughts about yesterday's publication of the long-awaited paper from Harvey Alter and company (the paper that I mentioned had been withheld in my last post), as well as the media coverage which followed:

1. This was a much smaller study than I was expecting. It was only 37 patients and 40 controls. May explain why Big Pharma still sounds so tentative, despite the accompanying commentary [note: PDF] that suggested clinical trials of anti-retrovirals for ME/CFS patients would be appropriate to help answer the question of causation.

2. I was surprised that the angle journalists took (perhaps based on the spin from tele-news conference & CFIDS Association) was "new hope for CFS patients" rather than "11 million people might have a leukemia-causing retrovirus and it's tainted the blood supply!" I would have thought the later would have sold more papers, but that's just me.

3. What I really appreciated about this paper was that it took the whole XMRV discussion beyond "she found it; he didn't" to a whole new level: we might be looking for a family mouse-derived retroviruses. This is what good science does. What has been so frustrating about the research thus far is that because they hadn't been actually replicating the original Lombardi paper in Science, they were simply showing us how NOT to find the virus. It really wasn't moving us forward but it was wasting a lot of time.

4. It sounds like Alter is saying that XMRV is one variant of a family mouse-derived leukemia viruses. Could the DeFreitas virus be among them?

Just a few thoughts after yesterday. Off to rest. Totally crashing after the excitement.

Okay -- just one more question after talking to my boyfriend in the UK, why are papers in the UK not reporting on the Alter paper? Have they all decided that the matter is settled from the earlier negative studies?