The Tip Of The Iceberg

We are driving from Dallas to Santa Fe today, so I have only an iPhone to write on. I started this as a comment to respond to In Vitro, but got carried away. It is off the cuff and there are unsubstantiated statements (and probably typos), so I anticipate critcism. Yes, this is loose. I am ever hopeful of a meaningful discussion between scientists, doctors and patients, so I tolerate all the ugliness in the comments. I have no interest in or time for moderating the comments on this blog. I wish the more annoying elements, nasty and repetitive, would cease and desist. Say it once or twice, not twelve or fifty times. It isn’t any smarter after repetition. And I don’t understand the need for disrespect and reactions verging on paranoia. There are lots of smart people reading. If we could engage that talent for the greater benefit, we might get somewhere. 

In the paper under discussion, the group from Sardinia seemed to think they were dealing with “virions” and that they could reliably measure viral load. I am on an iPhone so can’t cite chapter and verse. There are more clues in the references from that same paper. That work was done years ago already. Not replicated or retracted. No dismissal as contamination. Just nothing. I guess MS doesn’t rate all that much better than we do. The lack of curiosity on the part of a small community of scientists sitting on top of a powder keg is disturbing and difficult to explain. 

I do not, and will not read ERV’s blog, so please do not reference it. She wrote about me a long time ago in a way that made it clear that she is not only narrow minded, but completely lacking in compassion, as are many of the characters in this movie. No credibility as far as I am concerned. So if there is something you would like me to read, please give me the papers, not some graduate student’s interpretation. So far, I’ve seen nothing to suggest that I’m wrong about anything of substance. I keep waiting for somebody to make me think harder. Do you have something better than, it isn’t true, because it isn’t in the literature? Do you have a better theory? 

I was not implying that MSRV is the causative agent in our disease. I was making a case for the possibility of a similar endogenous retrovirus being involved. Or for one or more defective sequences to have been rescued by otherwise harmless simple animal retroviruses. Or, or…

As for gender disparities, the fact that more women are diagnosed with CFS and there are more males with ASD is not incompatible with their being related infectious diseases; the male brain may be susceptible earlier in life. Females are apparently more susceptible at puberty, post-partum and during perimenopause. All broad trends; male and female individuals can get sick at all ages. Vaccines implicated quite often (both live attenuated and killed), in both ASD and CFS, but not consistently, like everything that has been looked at. 

The work of Andrew Mason on a beta retrovirus associated with Primary Biliary Cirrhosis and an antimitochondrial antibody suggests overlap with our disease. A mitochondrial defect is implicated in the pathogenesis of Parkinson’s Disease and mtDNA mutations may be involved. One of the autoimmune markers that shows up commonly in ME/CFS is anticardiolipins; the inside of the mitochondrial membrane is rich in cardiolipins, a phospholipid common to mitochondria and bacterial membranes. If anyone would look at the epidemiology in a big way, I suspect a pattern of maternal inheritance will show. Lots of reasons to study our mitochondria. 

Looking for it is a mess, because it is a mess. It isn’t one thing. Lots of sequences recombining with lots of other sequences. Some replicative, some not. One group looks a bit different than another, but with notable similarities. Members of family groups can have symptom clusters that resemble each other but are distinct from symptoms of other family groups. I predict that it will not be as neat as the work on MSRV.

Virus, genetics, injury. We are the canaries. The tip of the iceberg.

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53 thoughts on “The Tip Of The Iceberg

  1. >I will look up Lenny Jason's study showing cfs spread in homes to non blood relatives, but obviously that happens in the outbreaks. It also happened routinely in the small town where I lived 30 years. There is no debate that cfs is genetic although there may be genetic proclivities.

    Jill Neimark, I am sensitive to toxic mold – just call me "mold dog". I have now visited 3 homes where Dr. DJ lived – two in the desert. I did not sense mold as an issue in these homes with the possible exception that there were books on the shelves. My own home in the very humid south did not make me worse or better. I did get much better while living there and taking a couple of years of Zithromax. My husband also does better on Zithromax, but both sons we raised there were never sick at all during their years living there. I get very sick in airports and buildings where there has been water damage. Also, doing NOTHING to avoid mold I had, at one point recovered to where I could walk, swim and travel. Not anmore, but it is not the mold level that has changed.

    Okay, I will shut up. Anyone want to discuss the role of modern day wheat?

    Ha! Look out…

  2. >Paula, you had no idea that you were reacting to mold until I explained it to you at the Peppermill. Wasn't it amazing to find out that this effect was in plain sight all along, yet had not risen to the point of your being conscious of it?
    Did you think that told you everything you needed to know?

    After all my posts in that private group, did you never stop to consider that there might be a lower level at which overt discernment fails, yet the immune system could still be affected?

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