Here are a couple of articles sent by friends this morning… link and link. I read them with my morning coffee and both made me feel sick for different reasons. I hated to dignify the first one with a link, because the site is so appallingly illiterate, but this is what the newly diagnosed will find when they go to the net to learn about their illness, since it looks like they aren’t going to get to have a real disease for a little while longer. But not to worry, Kim McCleary says doctors know it when they see it, “like Beethoven’s first symphony”. Oh you have CFS? Too bad. It’s caused by lots of things. Like a “stressful state”. XMRV was all a mistake. Take L-carnitine.
The second article blows my mind, because McCleary didn’t manage to say one thing I can relate to as a patient, other than yes, my daughter and I both have it. The swift decline and no resolution she describes doesn’t even come close to describing the course for many, if not most patients, since recovery to 80 or 90% within a year or two of the first episode is a common history. There are a large number of patients who experienced gradual onset, but wound up in the same place as the ones who remember the moment of onset, and one would expect her to be aware of this. Her description of my disease as “not sexy” is offensive. This woman definitely doesn’t speak for me. She’s the president and CEO of the CAA, the national organization for the disease we have. How did that come to pass? As I’ve said before, I’m a newbie. I only figured it out about CFS as an inseparable entity from treatment resistant Lyme when I read the Science paper. Before that I knew the extant drivel in both the conventional and alternative worlds that espoused the “it isn’t one thing” theory, but I didn’t identify, since the drivel in the Lyme world fit us better.
Now that I’m starting to wonder about the characters and history, which never really interested me before, and trying to consider the most likely motivations of the various players, it’s shaping up to have the makings of a rather twisted tale. History driven by the personal needs of a few people, millions of lives at stake. It may rise to the level of allegory. Our knights in shining armour? There’s the good old CAA. I’ve been sick on their watch for 16 years. Suzanne Vernon was spawned by our captors at the CDC, then went to work with the CAA. Take a look at the Banbury Report, about a meeting that took place a few weeks before the Science paper was published, in which Dr. Vernon states that she thinks one of the things she knows for sure is that it isn’t a retrovirus. Then there’s the HHV-6 Foundation. Dan Peterson is on the board of directors. And let’s see, Konstance Knox is an expert in HHV-6. In fact, Knox/Levy is the first paper she’s ever published that wasn’t about HHV-6. Her lab is heavily invested in an HHV-6 assay. I wonder what HHV-6 Foundation spends it’s research dollars on? And as Mindy Kitei asked here, what’s Dr. Levy’s stake in all this? Ah, what a tangled web… Life is stranger than fiction. Definitely a story fit for an Osler’s Web sequel.
Lots of people seem very committed to it not being a retrovirus. Why would that be? I realize that it can’t possibly be as black and white as it appears. They can’t all be psychopaths. They must at least be lying to themselves, like some of the scientists who said that simple endogenous animal retroviruses couldn’t hurt humans, and don’t even want to learn the truth now, preferring to be dead before the puzzle is solved.
Here’s a letter to Science from patient advocate Chris Douglas, that says it very well. link
Meanwhile, unrepresented patients are starting to organize. This is very important. We need to nurture the sparks of this fire. Don’t let it go out. Thank you, from all of us, to the participants. YouTube and Write up
The WPI is a translational medical institute, a discussion in progress, not expecting all the answers to be in before applying the pieces we do have. The mission of the institute is to cure CFS, but it is a small organization and the virus has turned into such an unexpected fight that defending the prior work is a huge task. Each new salvo triggers a wave of self-examination, trying yet again to find the flaw, but despite the multitude of negative studies, nobody has yet explained the most important thing. Only some of the patients are positive. Not none and not all. Far from requesting a retraction, Science, if truly objective, should be demanding answers with respect to the gaping holes in the arguments of the authors of the negative papers. A number of people have written that they hope the work at the WPI will not be limited to XMRV. The most recent Lombardi et al paper, Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature. Lombardi/Mikovits, helps to define the disease, whatever the cause and adding the clinical practice will further broaden the focus of the research.
What if it was all a mistake for some technical reason (though it’s hard to see how that could be the case). But say it was all a big accident. Then XMRV may still be a signpost. Paprotka et al found a cell line started in the early 90’s that produces it. Although the online supplemental information doesn’t tell us how they derived their number for probability of the event, even assuming they are correct, that it’s a very unlikely event, it happened once, and think how many chances there have been for similar events. This type of random recombination event may not even be necessary for HGRV infection, as already replication competent viruses may be involved, present in mice not susceptible to infection, but xenotropic, capable of infecting the cells of other animals, including human. Am I just speculating? Well, so are they. But if I’m wrong, some time and money is lost, in the attempt to save millions of people. If they’re wrong?
Breaking good news, for a change, from the International Conference on Human Retroviruses, in session now in Belgium, evidence that some labs can find XMRV in human tissue:
A Prototype RT-PCR Assay For The Detection of XMRV In Multiple Human Sample Types. Tang/Abravaya found positives in formalin fixed paraffin embedded prostate cancer specimens and urine pellets, using 22Rv1 for their spiked control, rather than a VP62 clone. Here’s a twist- Graham Simmons appears on both this paper and Knox et al. He didn’t tell the team he was on that couldn’t find it about the team he was on that could? How strange. But the important thing is this group was able to distinguish negatives from positive controls, even though the positive control was not a human isolate, and they found it in human tissue (not blood).
And these papers sound promising, but no abstracts:
We also heard this from the Invest In ME conference held in London last month:
The final presentation was by Wilfried Bieger (Munich, Germany). He mentioned their earlier studies to detect XMRV, which had been negative. His team had then collaborated with Judy Mikovits and set up a highly sensitive, specific and uncontaminated protocol for virus detection, sequencing of viral DNA and antibody testing with western blot. Viral DNA and RNA were not detected in fresh blood, but after cultivation of PBMCs for 6 weeks under stimulation and using partly co-culture with virus permissive LnCap cells, culture cells turned positive in some patients. Presence of XMRV was confirmed by sequencing XMRV specific DNA. There have been approximately 40% positives so far.
It’s more than smoke. It will burst into fire, despite the best efforts of some to smother it. We need to fan the flames. Don’t let them forget us again. There are future generations at stake that can’t be allowed to go through what we have.