Tag Archives: xmrv

Weekend sendoff: Judy Mikovits and bad science

No sendoff today, instead some strange news to discuss. A few days back, Data_Jack was kind enough to alert me to a new post at ERV, which briefly mentioned that Judy Mikovits will be presenting about XMRV at the AUTISMONE conference.

A little background. Mikovits is the lead researcher on the XMRV study done by the Whittemore Peterson Institute (WPI). Austimone.org lionizes the now completely discredited Andrew Wakefield, as well as the eminently irrelevant Jenny McCarthy, in their efforts to continue frightening parents with bad science about a nonexistent link between vaccines and autism. Given that the CFS-XMRV link itself is still utterly tenuous, I was somewhat alarmed to see that Mikovits has moved on to autism.

And with good reason, as it turns out. I did a little searching about XMRV and autism, and found this article from another bastion of antivax lunacy, the Huffington Post. In it, Mikovits is quoted as follows (emphasis mine):

“On that note, if I might speculate a little bit,” she said, “This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes — the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That’s its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you’ve now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency.”

What. The. Fuck.

What is Mikovits up to, not only cozying up to one of the largest dangers to public health — the antivax movement — but spouting their party line that has no basis in scientific fact? What respectable scientist would perpetuate this myth, even with that gutless “I’m just speculating” caveat?

Here is the abstract for her presentation:

Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD. We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS. Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.

Funny that the abstract promises to mention “evidence of XMRV infection in ASD” while leaving out any mention of the fact that XMRV is found in a percentage of healthy controls as well. (Aside from the WPI’s study, here’s a Japanese one that discovered the same thing.) Given this, I might expect that there’s evidence of XMRV infection in people with anemia, bipolar disorder, acne, a slight cough, myopia, etc. But because CFS patients and ASD patients share some symptoms, Mikovits is presenting at an antivax autism conference on the hypothesis — I see no study listed here that will be presented — that XMRV is involved.

CFS also shares symptoms with fibromyalgia, lupus, MS, and many other illnesses. Can we expect to see Mikovits presenting at conferences for all these diseases, sharing her speculation that XMRV is involved with all of them as well? Or has she simply identified another vulnerable, gullible population on which to push her extraordinarily premature agenda?

I wrote to the WPI this week about my concerns. As of this post, I have not received a reply. At the moment, therefore, I’m not seeing anything here to be positive about. If Mikovits is so eager to connect her research to a dangerous and fallacious area of “investigation,” my already iffy feelings about the WPI and the future of XMRV and CFS have plunged even further towards total pessimism.

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Weekend sendoff: It’s not all bad

Johan Mares, a CFS patient in Belgium, has been documenting his experience with the Himmunitas biomedical clinic near Brussels. I’ve enjoyed reading his methodical approach to his treatment, especially the issue of whether to get tested for XMRV. In his first post, he raises the question and puts it to his readers, and in his second post, he explains the process that led him to his decision. Since I’ve been on such a rampage lately about the lack of skepticism surrounding XMRV, I wanted to highlight Johan’s work as a contrast. And of course I wish him well with his treatment!

In other news, I’m changing my main post from Mondays to Tuesdays. So if any of you were wandering around here on Monday, confused and frightened by the lack of a post, you can call off the investigation and tell David Caruso to put his sunglasses back on.

I had been planning to send you off with OK Go’s awesome new Rube Goldberg video, but now that everyone and their hairdressers’ dogs have seen it, I’m continuing the Creme Egg theme instead. See you Tuesday!

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Hey you! Dill weed.

A few things happened over the weekend. I had a delightful lunch with a friend, which is partly why I’m posting on Tuesday instead of Monday and owe everyone emails. I made some experimental and ultimately yummy egg salad. And I unsubscribed from the CFIDS Association’s Facebook page.

This last should bring some relief to those of you tired of my ranting about CFS patients and the Holy XMRV Grail. I’m not saying I’m done hammering that nail, because it still catches on my clothes and gets under my skin, but I’m putting a moratorium on entering any CFS-related forums or groups for now. I know I want to do something, but I don’t really know what that is, and so I just get frustrated with my fellow patients without having anything especially productive to add, since we’re way past “XMRV isn’t science yet” at this point. It’s easy for some people to leave their woo groups behind when they become a skeptic, but I need to stay plugged into chronic illness and especially CFS information at least to some extent. And those communities are filling up with bad science now even more than before the WPI’s study, and it’s just too deep for me. I’ll get back to this.

So instead I am posting the recipe for that egg salad. “Recipe” is actually too generous of a word. It’s a map to your destination, not directions, because my experimental process is extremely sloppy. My usual measuring amount is “about this much ought to work.” You can consider everything in this recipe “to taste.” I call it Skeptical Egg Salad because I was, as you may be after reading the ingredients, not sold on the results of the experiment until I tasted the proof. And it was good.

Wrong eggs, but 'tis the season, amirite?

Ingredients:

6 to 8 hardboiled eggs, peeled and rinsed
3 to 5 strips of bacon, chopped into lean crumbles
A dollop of light mayonnaise or similar
Fresh dill, finely chopped
Fresh celery, finely chopped
Pine nuts
Capers
Old Bay seasoning
Celery seed
Dried dill weed
Paprika
Salt and pepper

Mash up the eggs real good-like. Put in as much of everything else as you like. Stir and refrigerate overnight. Eat on Triscuits.

Notes:

  • Because you’re putting so much texture into this salad, the egg base should be very smooth. I’ve found a potato masher to be my implement of choice. If you’re looking for a psychological as well as a taste sensation, try visualizing each egg as the skull of a person you’d like to see smushed. Cathartically mash it into minced-up goo. (Note: if you find yourself making egg salad on a daily basis, you may wish to consider therapy.)
  • Yes, I did mean to include both fresh and dried dill. I like my dill salad with a little egg in it. The dried dill and other spices are the reason to refrigerate it overnight, to let the flavors sink in. However, the bacon will be sexier if you serve it right away, so it’s up to you.
  • Be sure all your washed ingredients are very dry before you mix this together. It’ll get a little watery eventually because of the celery and dill, but avoid this initially by patting down the eggs and veggies. If you’re particularly suspicious, go ahead and give them a good frisking, but make sure someone else is present if you decide to do a strip search.
  • Traditionally I think I’m supposed to provide a photo of the finished product but, you know. It’s egg salad. Plus, I ate it all.

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