Word from PNAS

According to Mindy Kitei at CFS Central, the editor-in-chief of the Proceedings of the National Academy of Sciences has gone on record saying the FDA/NIH paper on XMRV would be published within weeks.

www.cfscentral.com/2010/07/fdanih-paper-update.html

Nice to hear. I find news more credible when a named source stands behind it. That said, I'm still not celebrating until I see the paper with my own eyes, and find that it hasn't been watered down.

Weeks

Apparently, the NIH/FDA study on XMRV will be published within weeks.

Apparently.

From CFIDS.org:

The study pending from NIH/FDA attracted a lot of attention in June after news of its conclusions was leaked by a Netherlands news agency. The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks.

From Mindy Kitei of CFS Central:

Sources to CFS Central say that the researchers' conclusions have not changed.

I am cautiously hopeful, but I'm not celebrating until I see the damn thing in print.

XMRV: Still in the dark

This in from Mindy Kitei of CFS Central

CFS Central has learned that it was the CDC that made the initial request to pull the FDA/NIH XMRV paper after the Proceedings of the National Academy of Sciences (PNAS) accepted it. Sources have told CFS Central that higher-ups in the Department of Health and Human Services (HHS) made the ultimate decision to hold up the study. In addition, insiders said that HHS can keep any government study from being published—no matter how solid—and that it is anyone’s guess whether the FDA/NIH paper will eventually be published.

Full article here.

My hope is that CFS Central's anonymous sources begin stepping out of the shadows. To those of us who are familiar with the history, all of the above sounds absolutely credible. To everyone else it's the stuff of tinfoil hats. We need solid evidence that Department of Health and Human Services is censoring scientific research.

Or, if we really are just being paranoid, then we need clearer explanations as to what's going on. Because the information we've been getting is contradictory.

How about it, NIH? How about it, PNAS?

Nominate ME/CFS for a cube grenade

A few weeks ago, I wrote about how Hugh McCleod is creating a free cube grenade for the business or cause he deems worthiest. I nominated ME/CFS.

Now Hugh is opening the nomination up to friends of people with the business or cause. The catch is that the friends can't have a stake in the outcome.

So, if you do NOT have ME/CFS yourself, please go to gapingvoid.tumblr.com/submit and nominate ME/CFS. If you need help articulating the reasons it should win, here are a few bullet points for inspiration:

• ME/CFS causes chronic pain, crushing exhaustion, early death, and a host of other misery-inducing symptoms. There is no cure.
  
  
• Despite the severity of the disease, most people think of "chronic fatigue syndrome" (its more common name) as just above-average tiredness.
  
  
• Despite the severity of the disease, it's received less funding than hay fever.
  
  
• Much of the little funding ME/CFS has received has gone to research on cognitive behavioral therapy (not terribly useful) and graded exercise therapy (harmful to people who actually have this disease).
  
  
• There may be a link between ME/CFS and a retrovirus called XMRV. Two new studies on this were set to be published: one found the link, the other didn't. Both studies were put on hold. The negative paper was published soon after, despite significant flaws. The positive paper is still on hold.
  

Please, please find the time to do this. ME/CFS isn't the only worthy cause out there, but it's absolutely one of the most neglected.

An XMRV primer for the folks who lightly skim my ME/CFS posts

From a conversation I had with a friend yesterday (highly paraphrased):

Friend: I've been reading your blog lately. What's the big deal about these XMRV studies?

Me: Remember how last year, someone discovered a link between the retrovirus XMRV and ME/CFS? Now other scientists are trying to figure out if the link really exists.

Friend: What if it does? What difference would it make?

Me: Because if there's a link, then they can help ME/CFS patients by treating the retrovirus. Like with HIV. Y'know how AIDS used to be a death sentence? AIDS is still something you really don't want to have, but now if you're on the retrovirals you can live with it.

Friend: But is there a treatment for XMRV?

Me: No. But if there's definitely a link, they'll have a reason to develop one.

Friend: Ah.

Dueling studies: One down

On Tuesday, we learned that the publication of two contradictory XMRV studies were on hold. Today, we finally have published results ... of the CDC paper.

I could speculate about why the NIH study is still awaiting release, but all the information has been confusing and contradictory, so I'll hold off for now. Instead, let's look at the results of the CDC study. Did they fail to detect a link because there isn't one, or because their methods were flawed?

The cohort problem

The CDC defines ME/CFS very broadly. As a result, their previous research includes many people who probably don't have ME/CFS. Though this paper is touted as a replication study of the Whittemore Peterson Institute's research, they didn't define their population using the same criteria. Here's an excerpt (all emphasis mine):

The 1994 International CFS case definition [used by the CDC] and the Canadian Consensus Criteria [used by the Whittemore Peterson Institute] are different and do not necessarily identify similar groups of ill persons. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy.

These are all common symptoms of ME/CFS.

Detection techniques

According to Dr. Suzanne D. Vernon, the CDC did not replicate the WPI study's techniques:

[T]he samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this weren’t bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.

You can read Vernon's critique at CFIDS Association of America's site. It's worth noting that the CFIDS Association of America is regarded with suspicion among many members of the ME/CFS community, who view it as the CDC's lapdog. In other words, the criticisms that the CAA now levels at the CDC are in no way knee-jerk responses to news it didn't want to hear.

So, it seems as though the CDC paper has some serious issues. Now we need to convince the powers that be to release the NIH study. Only then will we be able to see if it holds up to similar scrutiny.

Protest the suppression of XMRV research

Yesterday we learned that publication of the latest XMRV studies is on hold. Today there is a petition on Change.org to stop the Department of Health and Human Services from suppressing the studies.

Sign the petition here.

For updates on the situation, check out CFS Central.