I missed Dr. Lipkin’s dog and pony show a few days ago, but thank you to ME/CFS Forums for posting a transcript. Here again, it appears he has dismissed the only finding that actually adds to the discussion. It is just like last time when he dismissed the only positive finding in the XMRV study, that 6% of the people tested were positive for an antibody to a nasty mouse retrovirus, significance unknown. This time:
We found retroviruses in 85 percent of the samples. Again, it is very difficult at this point to know whether or not this is clinically significant, and given the previous experience with retroviruses in Chronic Fatigue I am going to be very clear in telling you, although I am reporting this at present in Prof. Montoya’s samples, neither he nor we have concluded that there is a relationship to disease. I’ll repeat that one more time. We found retroviral sequences, but their relationship, at this time, to Chronic Fatigue Syndrome is unclear and, in fact, if I were to place bets and speculate, I would say that they are not going to pan out.
In addition to this astonishingly unscientific statement, in the same week, he announced other recent findings. From the BBC News: “They found nearly 60 different types of viruses, most of which had never been seen before”, in one species of bat. He extrapolated this to suggest that there are 320,000 new viruses in mammals still to be discovered. However, he could find nothing at all in hundreds of sick humans. Presumably using the same techniques. Or is that the problem? Doesn’t it seem unlikely that there would be nothing to find in sick humans with low NK function and a propensity for opportunistic infections of all kinds? We are mammals after all. Here is the paper: A Strategy To Estimate Unknown Viral Diversity in Mammals. He wants to spend billions of dollars in an attempt to avert a pandemic, when he has several existing pandemics staring him in the face. I guess existing diseases aren’t as much fun as teaching Gwyneth Paltrow how to have a seizure. Then again, maybe we all really do need to be vaccinated for the next bat virus we might encounter.
But, he did give the nod that we are sick, not just crazy, so I guess that’s a good thing coming from such a high profile scientist. We have elevated levels of proinflammatory cytokines and chemokines. Completely nonspecific, all downstream effects, but abnormal numbers nevertheless, something measurable. In my experience however, the commercially available tests (Labcorp and ARUP via Quest) don’t show the abnormalities he describes (and which have been previously described by others), so we need more sensitive assays commercially. I’m not sure why the difficulty, but the clinical reality is that the doctors who are actually treating the patients have almost nothing to follow, except for a very few nonspecific inflammatory markers in some patients, e.g. hsCRP, C4a and TGF beta-1.
So that leaves us exactly nowhere, as usual. We are not going to be saved anytime soon by the medical model. Look how much the scientific method has accomplished for us in the last few years:-). As a doctor, I have a small bag of tricks to fight a terrible, incurable disease. However, it is an inherently unstable disease, relapsing and remitting all on its own. Look for a way to get a foot in the door. It is possible to tip the balance in favor of better health with global strategies that support the body, mind and spirit. Find synergy. Ali and I continue to be committed to the Wahls paleo diet. Less suffering for sure, after only a couple of months. Just like oxygen, methylation supplements, hormone balancing, we feel better from this intervention. Not expecting a cure, but we are both experiencing a bit more uphill movement, even though our diets were already pretty good. Please take a hard look at this diet, most likely beneficial for all neurodegenerative and inflammatory diseases.
Ali has all but moved out, her symptoms so manageable that she is mostly living with her boyfriend in Albuquerque, despite nearly new construction that once triggered her MCS so badly, she almost couldn’t be there. There was a time when I didn’t think she would ever be able to live away from me. Bittersweet…
She Blinded Me With Science (Live) by Thomas Dolby