"Science" and the rush to judgment

Here we go again. We barely get a chance to think about a new finding in CFS, and the door is slammed shut. I see nothing wrong with Jay Levy writing an article stating that XMRV is a contaminant - but I think it is most unseemly for "Science" to call for a voluntary retraction by WPI (and, ahem, that should be WPI + the Cleveland Clinic + the National Cancer Institute) of the 2009 Lombardi et al study. It is amazing that anyone would call for a halt to work on the retroviruses before the NIH study being conducted by Ian Lipkin has a chance to show results.

Okay, so at least they gave us eighteen months. Usually we don't get that long.

There were problems. I tested positive in that original 2009 study - they found XMRV by serum and antibodies. But when Dr. Peterson sent a sample to VIP labs early in 2010, it came back negative. That happened to a bunch of patients. My own take was that I was positive - I learned having HHV-6, Variant A, that commercial labs can't go to all the trouble that a researcher does - Dr. Ablashi did all my early testing. That is one of the main problems we have - the methods used in studies are far too labor-intensive for labs. It took two years after HIV was discovered – with everybody and their uncle trying – to get a viable commercial test for HIV.

While I understand why they did it, it was naive of the Whittemores to buy a lab (Redlabs, which they turned into VIP labs) to do XMRV testing – and even more naive of all concerned to charge people for testing before they knew the testing was going to work! (They quit testing for a while, then started it up again, then quit again. I was not surprised for that, just frustrated that no one seemed to know how expensive this was for patients, or how bad it looked. It raised suspicions among those who could have been allies.

[Added after comments: I am sorry if I left the impression that, on the whole, there is anything wrong with either WPI or VIP labs. That was just an early mistake. I still use VIP labs for a lot of different testing, and WPI has been nothing but professional with me. In particular, I want to show my support for Dr. Judy Mikovits, who is a scholar of stature and is working hard to uncover the roots of this Disease, and has shown particular kindness to my family. At the same time, I have nothing but respect and affection for Dr. Peterson, who has been the rock for so many of us with this disease, and has himself been responsible for developing a program of diagnosing through biomarkers and treating with valid, published treatment programs, or in formal studies. I'm just asking that we keep this professional, for the sakes of those professionals who are doing so much for our community.]

What really impressed me was the Lo-Alter study. It wasn't a replication, but it was confirmation that the gamma retroviruses (of which XMRV is one) were involved. Then the Barcelona study – followed by the sudden withdrawal of funds to the Barcelona group, which is a great loss because they were working on other biomarkers. It was a message: find the retrovirus, lose your funding. Hmmmm.

While we're in the subject, I think we should keep mum publicly about any positive studies we know about that haven’t been published yet – for now.

And I’ll be honest about something: I don’t want a retrovirus – and I really don’t want my daughter, who hasn’t had children yet, to have a retrovirus.

Personally, I think HHV-6 Variant A is a scarier disease than XMRV. HHV-3 has a name – vericella zoster, or chicken pox and shingles. HHV-4 has a name – Epstein-Barr or mono. HHV-5 has a name – cytomegalovirus. But then there are no names. And when you tell a doctor you have HHV-6 variant A, which causes encephalitis and CNS damage and can cause myocarditis, they say, “what does HHV stand for?”. When you answer “human herpesvirus,” they say, “Oh! Herpes!” Oh great. They think we’re talking about cold sores (HHV-1) or STD herpes (HHV-2).

The press doesn’t know about HHV-6A and its role in our disease, thanks to the CDC and NIH. I’ve tried to get reporters who are hot on the trail of XMRV interested in the OTHER biomarkers and viruses we KNOW we get, but they are not interested. Yawn. I have both HHV-6 Variant A and cytomegalovirus in my spinal fluid for heaven’s sake. Yawn.

It seems in the press the choice is either XMRV or the PACE study – either we have a scary old retrovirus or we are nuts. It may be the editors, not the reporters, but the end result is the same. Either we have a scary retrovirus or we're nuts.

Is ANYBODY going to write about the severity of our disease just based on the severity of our disease? Guess not. Very dispiriting. [Actually first published in 2011 but changing the date was the only way to move it to the back of my files!]