Lately my life has been upside down. Personal issues have taken precedence over all things CFS, for the first time in a very long time. Work on the media project has gone forward, but with a hit-and-miss schedule and on a slower pace than what I’d planned on. But then again, we all know how “planning” works with this illness. X amount of energy converts to dropping the ball in one arena when another rears up and requires immediate attention.
Speaking of X -
I have, however, been posting the research into the XMRV-and-related retroviruses onto the media center. As I do so, it strikes me anew that the entire community has been on the rollercoaster ride from hell for almost 2 years now. I’m reminded of the appropriately-named “Xcelerator” at Knott’s Berry Farm, the first hydraulically launched coaster. The twin-hydro motor revs up 10,500 horse power to catapult you from 0 to 82mph in 2 seconds, in less than 200 feet of track. This was the mother of all modern hydraulic coasters.
Since it was essentially a prototype for inversion rides, Xcelerator had (and still has) its problems. If there aren’t enough people on board, it has difficulty ascending the tower and does a rollback. This requires a reset and several test launches. It also can’t run in the rain….not even a light drizzle…because it hydroplanes.
I can find so many analogies here it’s ridiculous. Exciting new concept presented to us at CFSAC October 2009. Huge horsepower with Annette Whittemore and Dr. Dan Peterson initially joining forces. Not enough people on board with funding and replication studies. Plenty of rollback. Lots of rain.
We, as a community, have been strapped into this ride for the duration, like it or not. We’ve experienced the thrill of speed, the crushing disappointment of rollback, the disorientation of inversion, and the whiplash of jerking start-and-stop misfires. We’ve collectively raised our hands above our heads and screamed in delight as the ‘coaster flung itself to its top speed of 117mph. We’ve experienced collective nausea as we were repeatedly turned on our ears, as the scientific community (and our own advocates) presented bad studies and blocked funding for good ones. We’ve exhausted ourselves ad infinitum as we’ve watchdogged the mechanics at the controls, as it became evident from time to time that the monkeys were running the zoo. We can now legitimately add Post Traumatic Stress Disorder to our long list of comorbid conditions.
Singhing in the rain
The latest roadblock to the completion of this ride seems to have been delivered to us today in the form of Dr. Ila Singh’s latest study, which did NOT find XMRV in patients with Chronic Fatigue Syndrome. According to Vincent Racaniello’s blog, the authors of the paper (Shin, Bateman, Schlaberg, Bunker, Leonard, Hughen, Light, Light and Singh) made the following conclusion:
Given the lack of evidence for XMRV or XMRV-like viruses in our cohort of CFS patients, as well as the lack of these viruses in a set of patients previously tested positive, we feel that that XMRV is not associated with CFS. We are forced to conclude that prescribing antiretroviral agents to CFS patients is insufficiently justified and potentially dangerous.
What does this study mean? Does it mean that the Xride is derailed? And if so, is it because there really is no association, or is it because there still hasn’t been a replication study in which the Lombardi et al techniques were exactly duplicated? Does it mean that Dr. Singh’s all-new assays don’t work? Do the politics surrounding some of the researchers come into play?
I don’t know the answers to these questions.
Here’s what I DO know.
- WPI has not ever been given a fair shake with research dollars, and to date, with a true replication study.
- Even if XMRV does not pan out, we must make sure that CFS does not drop back into the political cesspool of research oblivion.
- Even if XMRV DOES pan out, we must make sure that we don’t close the door to the idea that there might be even more to this, unless and until XMRV can account for every single symptom.
- If XMRV has shown to be infectious, regardless of its origination, we can’t allow policitoscience to assign it to DeFreitas-style hell.
Please help us build the Resource Center
We’ve been collecting components in our effort to establish a place to peruse through all news articles and research papers connected to ME and CFS. It’s going to forever be a work in progress, due to the fluent nature of the platform. I’d like to take this opportunity to invite all of you, the people who have been vigilantly watchdogging the politics and science, to submit brief commentary to any of the articles or research papers listed on the website. You can do so by contacting email@example.com. The “Singh” paper will be posted as soon as I can get my hands on it…(update…it’s here)
If you’d like to volunteer to participate in “case studies”, please contact us at the same email address. We’d like to have several studies of people who are willing to use their real name and submit a picture. More information upon request!
Let’s do everything we can to keep the politicos on their toes.