(note: for those who receive this via e-mail, this post contains some video links, which can only be accessed from the Wheelchair Kamikaze website itself)
Well, it's again that time of year when a jolly fat man in a red velvet suit slides down chimneys and performs home invasions in an endless search for cookies and milk. Yup, it appears my uncle Bart is once again off his meds. I think it may be time for an intervention…
The holiday season is upon us, but unlike in conflicts of old during which a truce was often called in reverence to the holiday, the war that MS wages upon its victims continues unrelentingly, as does the attempted counterattack being fought against MS. There's plenty of research news to catch up on, and I'll throw a few other seasonal tidbits on the Yuletide fire to keep with the holiday spirit.
So, grab a nice cup of spiked eggnog, hot cider, or kosher wine, as I submit the following items for your perusal, all the while wishing you a Merry Christmas, Happy Hanukkah, Good Kwanzaa, or, if none of those float your boat, then just a damn good week…
♦ Speaking of alcoholic beverages, a new study out of Belgium suggests that drinking booze and coffee, and eating fish may help delay disease progression in patients with relapsing multiple sclerosis ( click here -may require free registration, which is well worth it for the wealth of information available on this site). Unfortunately, the same does not hold true for patients with progressive MS, whose intake of these substances didn't significantly alter the course of their disease. As usual, progressive patients are the redheaded stepchildren of the MS world, spanked in the ass and sent to bed without dinner. Smoking was found to be detrimental to both relapsing and progressive patients.
Researchers found that relapsing patients who drank moderate amounts of alcohol and coffee, and ate fish at least two times a week, had a significantly increased time of disease progression to the level of EDSS 6, which is defined as the point at which a patient needs intermittent or unilateral constant assistance (cane, crutch or brace) to walk 100 meters with or without resting. Interestingly, in progressive patients it appears that the type of fish eaten (fatty or lean) impacted the speed of progression. Patients who ate fatty fishes (such as salmon, tuna, and mackerel) fared worse than those eating leaner varieties.
The discrepancy between relapsing and progressive patients' response to the dietary influences studied is likely attributable to the fact that relapsing disease is more inflammatory than progressive, and alcohol, coffee, and fish all have anti-inflammatory properties. Fatty fishes tend to pick up more environmental toxins, which may account for their association with increased rates of disease progression.
♦ A major new study recently completed by the Mayo Clinic in collaboration with the Cleveland Clinic has the potential to completely rewrite the scientific understanding of how multiple sclerosis develops and progresses ( click here , same deal with possibly having to register). For many years, the conventional wisdom has been that MS started deep in the brain, attacking white matter (myelin) first, and only later disrupting a patient's gray matter (nerve cells). In examining brain biopsies taken from patients very early in the disease process, the researchers discovered that, much to their surprise, there was inflammation and damage being done to the meninges (the membrane covering the brain), the subarachnoid space (which contain cerebrospinal fluid), and the gray matter, occurring concurrently with early damage done to myelin. In other words, instead of working from the inside out, the disease may work from the outside in.
The fact that such a basic understanding of the disease may have been wrong for many decades only underscores how pitifully little is actually known about the MS disease process, despite the tremendous amount of time spent researching the disease. This could be a discovery of terrific import, and may eventually turn the way MS is treated completely on its head. Interestingly, some news outlets reported this research as finding neurodegeneration in the absence of inflammation, which is incorrect. One of the lead researchers on this project, Dr. Claudia Lucchinetti, has done some previous research that hinted at such neurodegeneration, but this most recently released research finds inflammation throughout the CNS of patients very early in the disease process. Here's a video of Dr. Lucchinetti talking about the discovery:
♦ Another new hypothesis about the genesis of multiple sclerosis is being published in the Quarterly Review of Biology. Entitled "MS Is Not a Disease of the Immune System", the paper suggests that MS is a result of faulty lipid metabolism, or the inability of the body to properly uptake, breakdown, and release lipids ( click here ). In this scenario, an accumulation of toxic lipids, in conjunction with other genetic or environmental factors, leads to damage in the central nervous system and eventually to a clinical presentation of multiple sclerosis. Rather than get into a lengthy explanation here, I'll refer you to the blog of Nicola Griffith, a writer living with MS ( click here ). Her description of this new theory is quite clear and extremely well presented, and a big thanks to Nicola for bringing this research to my attention.
♦ In keeping with the Christmas spirit, here's a lovely little story about an MS patient who was ripped off to the tune of $65,000 by her health aide ( click here ). I'm constantly coming across news stories about MS patients being assaulted, having their wheelchairs or scooters stolen out from under them, or otherwise being criminally victimized. WTF? Some humans simply don't deserve to be called humans. Now, we've all committed deeds that would make our mothers embarrassed to have borne us, but by and large the MS patients I've met are a pretty decent lot. Who knows, maybe some were scumbags before getting sick, but I don't get that sense. Although my rational self knows not to expect some sort of easily discerned "just universe", it still galls me to no end to watch the nightly news and see a parade of murderers, rapists, and child molesters sauntering effortlessly past the cameras, even while handcuffed. Why do these evil, demented, living and breathing turd blossoms enjoy robust good health while so many decent folks I know suffer miserably with a progressively crippling disease? That's strictly a rhetorical question, no need for any direct answers…
♦ Here's a thought-provoking piece published in the Washington Post, entitled "Was My Doctor Loyal to Me, or to the Drug Companies?" ( click here ). Now, there's a question that has crossed the mind of many a patient. With the tentacles of Big Pharma reaching into almost every aspect of what I like to call the Medical Industrial Complex, one can never be sure if treatments are being offered because of their superior efficacy, or because the physicians prescribing them have been influenced by the largess of the drug companies producing them.
My personal neurologist doesn't allow any pharmaceutical reps into his clinic, and the facility is completely absent posters, pens, pads, or promotional materials of any type hyping one drug or another. This is in direct contrast to the offices of all of my other physicians, upon which the name of one pharmaceutical or medical device product or another is emblazoned on every available surface, placed strategically to be ingested wherever my gaze happens to land. Why the practice of Pharma companies paying off doctors (either as "consultants" who barely do any consulting, or with invitations to lavish "educational symposiums" held in luxury resorts, whose primary teaching function appears to be how to sink an 18 foot putt) is legal is beyond me. When I worked in the music industry, the practice of paying off radio station managers and DJs to play our labels' music was called "payola", and people who were caught engaging in this practice wound up doing time in the clink. Not so with Big Pharma and physicians, though. In an industry where the health and well-being of an entire nation is concerned, barely camouflaged bribery is considered business as usual. Ho Ho Ho, Merry Christmas…
♦ This is the time of year when charities rake in a tremendous amount of donations. I'm often asked which MS nonprofits are most worthy of my friend's and family's money, so here's a list of very worthy MS research organizations. These are all smaller outfits, dwarfed by the giant elephant of the MS nonprofit universe, the National Multiple Sclerosis Society. Unlike some other bloggers and activists, I have nothing against the NMSS. Although it might not always act quite the way I would like it to if I were king of the forest, the organization does do a tremendous amount of good across a wide array of issues impacting patients suffering from Multiple Sclerosis. The problem is that to the general public the NMSS is THE multiple sclerosis organization to which to donate, leaving the little guys scrambling for scraps. The following organizations all do exceptional work, and are very deserving of any donations that flow their way:
· The Accelerated Cure Project ( click here )-this group maintains a large MS repository, consisting of blood samples and extensive demographic data taken from well over 1000 MS patients, making it an extremely valuable resource to researchers worldwide. 2011 saw the 50th research project done using repository samples and data, and the ACP is currently putting together a repository devoted to neuromyelitis optica and other demyelinating diseases.
· The Myelin Repair Foundation ( click here )-the MRF is devoted to revolutionizing the way MS research is done, dramatically shortening the time it takes to shepherd a potential treatment from discovery through regulatory approval. The MRF, founded by Scott Walker, himself an MS sufferer, is especially devoted to hastening the development of neuroregenerative and neuroprotective therapies, which are the holy grail of MS research.
· The Multiple Sclerosis Research Center of New York ( click here )-this is the research arm of the MS clinic that takes care of me, under the direction of Dr. Saud Sadiq. This completely independent research center is on the cutting edge of MS research, and recently won approval for one of the first regenerative MS stem cell trials to be done in the United States. In addition to extensive stem cell research, MSRCNY scientists are hard at work exploring new and more effective MS treatments, looking for biomarkers to increase the diagnostic accuracy of the disease, and providing dramatic symptomatic relief for MS sufferers. Lots of outside of the box thinking going on in this place.
· The Buffalo Neuroimaging Analysis Center ( click here )-BNAC is at the forefront of CCSVI research, conducting extensive imaging studies on MS and non-MS subjects that have already shed much light on the CCSVI hypothesis and its role in the fight against MS. Led by world-class researcher Dr. Robert Zivadinov, BNAC is also undertaking one of the first CCSVI treatment trials being done to strict scientific standards. CCSVI has the potential to profoundly change our understanding of MS, and BNAC has the potential to be the organization that unlocks the secrets of CCSVI.
· The CCSVI Alliance ( click here )- the CCSVI Alliance promotes education and research about CCSVI and its relationship to Multiple Sclerosis by providing objective information to the MS community, supporting medical investigations of CCSVI, and fostering collaboration among patients, advocates, and professionals. They are currently working on patient education programs at major conferences around the country, and are working hard to encourage the interdisciplinary cooperation needed to unravel the mystery of CCSVI.
Well, as we come to the end of this post, I realize it might not have been filled with as much joviality as I initially intended. Sorry for that, and despite the "Bah Humbug" nature of much of the above, I'd like to sincerely wish all WK readers (and all non-WK readers) a scintillating holiday season. May all your wishes be realized, and all your dreams come true.
Here's a holiday song that seems especially fitting given the current state of world economic turmoil, which finds far too many struggling just to keep their heads above water. It's performed by a great rock 'n roll band that has long been vastly underrated. As the song says, "Have yourself a Very Merry Christmas, Have yourself a good time, But remember the kids who got nothing, As you're drinking down your wine".
RIP Christopher Hitchens