Bits and Pieces: Autumn Equinox Edition (also Tysabri, MS and HIV,viruses, relapse rates, misdiagnoses, diet, and asinine research)

Personification of Autumn (Currier & Ives lithograph, 1871) (Photo credit: Wikipedia)

Well, according to the full scale replica of Stonehenge that I have sitting in my living room (which is right next to my exact copy of the Sphinx and down the hall from my faux Taj Mahal – it’s incredible what you can fit in a 900 ft.² apartment with a little ingenuity) summer is over and autumn is now upon us. Time for packing away the seersucker, preparing for the harvest, and getting ready for the ceremonial sacrificing of virgins. Luckily, there are no virgins available in my apartment, so we’ll probably make do with sacrificing some gourmet chocolates.

Wish I could say I had an exciting summer, but this one was actually quite dull. A big shout out to Multiple Sclerosis for that one, as the beast has been heavy-handed with me these last few months. Even though I have progressive disease and the overall trajectory of my symptoms is always steadily downward, their severity does tend to inexplicably wax and wane a bit. The last few months they’ve definitely been waxing, and boy, I’m more than ready for a little wane – and I’m not talking about L’il Wayne, the notorious hip-hop artist (click here).

Alas, my replica of the Temple of the Oracle at Delphi tells me that it’s time for another edition of Bits and Pieces, my semi regular compendium of interesting MS related news and notions. Can’t argue with the Oracle at Delphi, lest mighty Zeus unleash a lightning bolt in my direction, and really, I have enough problems. So here goes…

♦ First up, some MS drug news. A study out of Italy has found that Tysabri is even more effective in real life clinical practice than it was during the trials that led to its approval for use in treating RRMS (click here). This study of 343 patients from 12 Italian MS centers found that, over time, treatment with Tysabri resulted in a 68% reduction in MS relapses, that 93% of treated patients saw no disease progression, and that 53% of Tysabri treated patients were free of any signs of disease activity. Very impressive numbers, to say the least, despite the fact that Tysabri is not without its concerns (chiefly the possibility of contracting opportunistic infections, primarily PML, a potentially fatal infection of the brain).

When Tysabri was first introduced I was highly dubious of the stuff, thinking that the drug’s dangers far outweighed its potential benefits, but I must admit that time has, it seems, proven me wrong. I personally know a quite a number of RRMS patients whose lives have been dramatically improved by Tysabri, some so much so that they refuse to come off the drug even after developing a higher risk of contracting PML. I’m still not entirely comfortable with the idea of screwing with the workings of the human immune system for years on end, and it pisses me off immensely that medical science (or at least the pharmaceutical companies) seems content at treating the disease rather than curing it, but if I was a newly diagnosed RRMS patient with a low risk of developing PML (in other words, negative for JC virus antibodies), given all of the available data starting Tysabri would certainly high on my list of treatment options. That's honestly something I thought I'd never say six or seven years ago. There are currently trials ongoing testing Tysabri on progressive disease, and it will be very interesting to see how those turn out.

♦ There’ve recently been a spate of headlines to the effect that “HIV May Help Prevent Multiple Sclerosis” (click here). The basis for these headlines is a study that looked at MS rates among people infected with the HIV virus (the virus that causes AIDS), which found that HIV-infected people were far less likely to develop Multiple Sclerosis then the general population (click here). What could be behind these shocking findings? Well, it’s certainly possible that the HIV virus itself has some kind of anti-MS properties. It’s also possible that HIV, which can do serious damage to the human immune system, suppresses the aberrant immune cells that are thought to lead to the development of Multiple Sclerosis. More intriguing, though, is the possibility that the anti-retroviral drugs given to treat HIV patients, which have become extremely effective over the last decade, may be doing something to curtail the development of MS in HIV infected people.

About a year and a half ago I wrote about an emerging theory that ancient retroviruses which have become part of human DNA over millions of years of evolution may be behind a variety of illnesses, including cancer, schizophrenia, and, yes, so-called autoimmune diseases like Multiple Sclerosis (click here). These ancient viruses are in the same class of virus as HIV, called retroviruses. Long thought to be simply “junk DNA” and merely innocuous remnants of the ancient past, it’s recently been found that some of these viral bits, which are part of every human beings’ genetic structure, might be activated by the presence of certain environmental factors (other viruses, bacteria, or toxins), and thus cause all kinds of trouble. This hypothesis provides an elegant explanation of autoimmunity, in that, if correct, it would mean that under certain conditions our own cells might act as attackers, thus initiating a response by our body's own immune system.

Could it be that the powerful antiretroviral drugs being given to HIV patients are shutting down these ancient retroviruses (called Human Endogenous Retroviruses, or HERVs), and so are preventing the HIV-infected people on these drugs from developing Multiple Sclerosis? An intriguing possibility, and one which is currently being investigated by a group in London who are using some off-the-shelf HIV drugs to treat MS patients in a trial that is now underway (click here). Additionally, another related trial being conducted by a research group in Switzerland is testing a drug specifically designed to target an ancient retrovirus that has been linked by some scientists directly to Multiple Sclerosis. This group recently released the results of a small preliminary trial which tested the drug on progressive MS patients and showed it to be safely tolerated. Furthermore, the trial demonstrated some early indications that the drug may be effective in treating the disease (click here).

This is exciting stuff which could potentially change the way we view and treat many dread diseases in some very profound ways. My gut tells me that there is really something to this research, and I only wish more time, money, and effort was being devoted towards fully exploring this hypothesis and its many implications.

♦ Yet more research on viruses and MS: a recently released study using new testing methods found that the spinal fluid of Multiple Sclerosis patients is rich in antibodies targeted at Epstein-Barr Virus (EBV) and Human Herpes Virus-6 (HHV-6), rather than against human myelin and nervous system tissues, as might be expected if MS were truly an “autoimmune” disease (click here). Epstein-Barr Virus, and to a somewhat lesser extent HHV-6, have long been suspected in playing some role in the MS disease process. Fascinatingly, both of these viruses have been implicated in activating HERVs , the ancient retroviruses that I discussed in the previous item. Could it perhaps be that in genetically susceptible people, common infections such as EBV (which is carried by more than 90% of the population) can turn on DNA switches that lead the immune system to attack tissues of the central nervous system? In the decades before the autoimmune theory took hold, much of MS research was directed at finding the presumed infectious cause of the disease. Perhaps these now discounted theories were in fact on the right track, and strict adherence to autoimmune dogma over the last 20 years has led MS research astray. Again, clues like those divulged by this study demand that more attention be paid to this area of research.

♦ Here’s one that belongs in the MS version of Ripley’s Believe It or Not. The gold standard of medical research is the double-blind trial, in which one group of patients is given whatever treatment is under study and another is given a placebo (such as a sugar pill or saline solution), so that the responses between the two groups can be compared. In MS research, one of the most common measures by which an experimental drug’s efficacy is judged are annual relapse rates, the number of MS attacks experienced by relapsing remitting test subjects over the course of a year. Strangely, over the last two decades the annual relapse rates of patients in the placebo arms of late stage drug trials has dropped by half (click here). That’s right, since the 1990s the rate of relapses experienced by patients being given “fake” drugs has declined by 50%, while the rates of people getting MS worldwide have gone up (click here). And no one knows why. Isn’t that reassuring?

♦ Some more reassuring news: I came across a list of the 15 most misdiagnosed diseases (click here), and wouldn’t you know it, our good friend and close confidant Multiple Sclerosis is right up there. Given the many mysteries surrounding MS and the fact that there is no diagnostic test that definitively determines whether or not a patient does indeed have MS, this really shouldn’t come as much of a surprise. Truth is, most experts peg the misdiagnosis rate of MS at somewhere between 5%-15%, meaning that perhaps 1 out of 10 of the MS patients reading this don’t actually have the disease. There are literally dozens if not hundreds of diseases and conditions which can mimic MS. Here’s an academic paper on the subject, which lists at its end 100 illnesses that can be mistaken for MS (click here). It’s easy to drive yourself crazy with such information, so be careful, but if you suspect you may have been misdiagnosed, there’s a reasonable chance that you could be right.

♦ The relationship between diet and MS has become a very hot topic of late. Through the years, many different diets have been said to be “anti-MS”, most often low-fat or low-carb diets rich in anti-inflammatory and antioxidant foods. In fact, I’m currently trying the Paleo diet, a way of eating that is supposed to resemble the dietary habits of our ancient ancestors. The theory is that the function of our digestive systems evolved over the millions of years that our forebears were hunter gatherers, and that much of what we’ve taken to eating since the discovery of agriculture some 10,000 years ago is actually bad for our health. The Paleo diet cuts out all sugar, dairy, wheat, and some of the most common cultivated crops. This means that people on the diet can’t eat bread, milk, cheese, rice, potatoes, corn, or many of the other staples of the modern menu.

Given the fact that I’m giving Paleo a try, my interest was quite peaked by this article (click here), which details the results of a study that followed dietary habits of 185,000 women over 20 years and found that diet seems to have absolutely no impact whatsoever on whether or not they developed Multiple Sclerosis. In fact, the numbers appeared to show that those eating what is considered to be an unhealthy Western diet developed MS in lesser numbers, although this trend did not reach statistical significance.

Now, I know there are many patients who swear that a radical change in diet has noticeably lessened the impact of their disease and some have gone as far as to claim that diet can even cure MS, and I’m certain that most of these claims are made in all earnestness. I'm not saying that this study is the last word on the subject, but it should provide food for thought (pun intended). At the very least a healthy diet is, well, healthy, and that can only be a good thing especially for people suffering from chronic illness. And for those who are wondering how I’m doing after more than two months on the Paleo diet, I’m sorry to report that I’m feeling pretty crappy, worse, I think, than before starting the diet. I have dropped a few pounds, which is definitely good since I was beginning to resemble a walrus (sitting in a wheelchair does nothing for the physique), but given my lack of results otherwise I believe my time eating like a caveman may be drawing to a close. I’m thinking that the next diet I try might be one of my own invention, which I dub the “Nothing But Philly Cheesesteaks Diet”. Probably not very healthy but… Yum.

♦ Okay, time for yet another edition of ASININE RESEARCH! Once again, I present another in apparently endless stream of studies that that delve into the ever enigmatic conundrum that is the relationship between multiple sclerosis, difficulty walking, and falling down. This topic really seems to float the boats of top-notch medical researchers who apparently can’t get enough of publishing papers probing the seemingly unfathomable relationship between a crippling disease and its patently obvious effects on ambulation.

Today’s asinine research paper is tantalizingly titled “Concern about Falling Is Associated with Step Length in Persons with Multiple Sclerosis” (click here). The abstract starts out with this sentence: “Fear of falling is one of the major concerns of people with multiple sclerosis.” Yes, yes, a dazzling observation! And fear of ruining ones undergarments is one of the major concerns of people suffering from explosive diarrhea. From this auspicious start, the paper goes on to detail research looking at how concern about falling alters the way MS patients walk. While investigators suffering from severe oxygen deprivation might assume that MS patients stride like Rockettes and strut about with all of the bravura of a young Mike Tyson, after much mumbo-jumbo about “spatio-temporal parameters of gait” and “gait asymmetry patterns” this study instead shockingly finds that multiple sclerosis patients tend to walk slower and take smaller steps than their healthy counterparts, and that this astounding effect is greater in those with a higher fear of falling. The study concludes by postulating that measuring step length might be a good tool for assessing the level of fear of falling in people with MS. I suppose assessing the level of terror on their faces is just too bothersome.

Did it ever occur to the researchers that MS patients walked slower and took smaller steps as a result of the disease, and that this might in fact be the reason behind their fear of falling and not the other way around? I certainly don’t remember having a healthy fear of falling before, you know, the disease took a hammer to the connection between my brain and my legs and left me no choice other than to walk slower and take smaller steps. In fact, these days if my steps get any smaller or my walking gets any slower my attempts at ambulation might better be termed "standing still". Yes, this all makes for a frightening experience, but it's not the fear that keeps my legs from moving, it's some little-known phenomena called "weakness" and "paralysis". Sheesh.

♦ It’s become my custom over the past several Bits and Pieces posts to end with some music from the “Neo-Soul/Retro-Soul” movement. Words can’t express how smitten I am with much of this music, which never fails to put some funk in my junk, some glide in my stride, some pep in my step, and some growl in my prowl. Hey, wait a minute, as mentioned above these days I can barely manage a stride, step, or prowl, so I’ll have to amend that – this funky stuff puts some chimp in my limp, some jumble in my stumble, and some gall in my fall. Can I get an Amen? Hallelujah!

The following ditty is by St. Paul and the Broken Bones, a band I was lucky enough to see at a free concert outside of Lincoln Center a few months ago. I went to the show primarily to see Charles Bradley, who I featured in a previous Bits and Pieces, but I was unexpectedly blown away by these guys, who I’d never heard of before they took the stage. As I mentioned earlier, this summer wasn’t a particularly terrific one in my book, but this show was definitely a highlight…