Recently, several studies have illuminated the important role that the proper flow of cerebrospinal fluid (CSF) through the brain and central nervous system plays in maintaining neurologic health, and also suggest that a disruption of CSF flow may play a part in a number of neurodegenerative diseases, MS included. Like CCSVI, which postulates that impeded bloodflow through the central nervous system plays a role in the development of Multiple Sclerosis, new research hints at a similar role for the flow of cerebrospinal fluid through the CNS.
Cerebrospinal fluid is a clear liquid that flows around the brain and spinal cord, and also fills natural voids in the anatomy of the brain, such as the ventricles and cisterns (the “empty” spaces in the brain as seen on MRI images). CSF serves several purposes. The brain and spinal cord are surrounded by CSF, the fluid in effect holding the brain in a state of suspension so that the weight of the organ is neutralized, keeping the lower part of the brain from suffering damage as a result of the total weight of the brain bearing down on it and pressing against the skull wall. In effect, the brain floats in a pool of CSF, which also acts as a cushion against sudden jolts or blows to the head. In instances where such trauma results in forces too great to be compensated for by the CSF, concussions can occur as a result of the brain crashing against the hard bone of the skull. Additionally, and no less importantly, CSF helps cleanse the brain of metabolic waste products, and also helps regulate the flow of blood through the central nervous system.
Most MS patients are familiar with CSF due to the ever popular and oh so pleasant procedure known as a lumbar puncture, or spinal tap. The stuff that the neuro draws out of your spine after sticking a spike into your back is CSF, which when analyzed can provide several indicators helpful in diagnosing the disease, such as oligoclonal bands, better known as O-bands. O-bands are an indicator of inflammation and immune activity going on within the central nervous system, an environment in which such activities are not welcomed. A vast majority of MS patients (upwards of 90%) have multiple O-bands, and the combination of CSF analysis and multiple lesions on MRI images are major components in completing a diagnosis of Multiple Sclerosis.
A number of recently published studies suggest that a breakdown in the natural flow of CSF can be quite detrimental to the central nervous system, and may be a driving force in the factors that culminate in neurodegenerative disease. One study (click here) discovered a previously unknown series of pathways that CSF follows throughout the central nervous system, providing new insights into the importance of CSF in the brain’s efforts to cleanse itself of potentially toxic metabolic waste products. Another study, done by Doctor Robert Zivadinov and the good people at BNAC, who are also doing extensive research into CCSVI, showed that CSF flow dynamics are altered in the brains of MS patients (click here).
Building upon the work of chiropractor Doctor Michael Flanagan, who has researched and written extensively on the role of CSF flow and neurodegenerative diseases (click here and here), another study, which used a specialized upright MRI device – known as a FONAR MRI – to scan MS patients, linked trauma to the upper neck and bottom of the skull to abnormal CSF flow and the eventual development of MS in study subjects (click here). This research, in turn, led to an ongoing investigation using FONAR MRI imaging in conjunction with a specialized chiropractic technique, known as Atlas Orthogonal, to demonstrate that not only is CSF flow abnormal in MS patients, but that this flow can be corrected by physically manipulating the Atlas bone, the uppermost cervical vertebra in the spinal cord. The bone gets its name because the weight of the entire head rests upon it, just as, in Greek mythology, the weight of the world rests on the shoulders of Atlas. This study is being headed up by chiropractor Doctor Scott Rosa and Doctor Raymond Damadian, the man who actually invented the MRI back in the 1970s.
The graphic below, which can be found at the information packed ATLANTOtec website (click here), nicely illustrates the detrimental impact a misaligned Atlas bone might have on blood vessels and nerves associated with the central nervous system:
In the above depiction, the yellow dot represents the vagus nerve, the blue dot the internal jugular vein, and the red dot the internal carotid artery. As the animation shows, a misaligned Atlas bone can put pressure on all three of these features, which, by appearances, one wouldn't imagine could do much good for the patient. Atlas Orthogonal chiropractors attempt to put the Atlas bone back into alignment using specialized techniques originated by Doctor Roy Sweat, which are taught at the Sweat Institute in Atlanta, Georgia (click here). The Atlas Orthogonal (AO) technique uses gentle pressure applied to the mastoid bone (behind the ear) to realign the Atlas bone, using a specialized table and an AO instrument carefully calibrated to each patient’s needs.
Since January, 2012, I’ve been taking part in the ongoing study being conducted by Doctor Rosa and Doctor Damadian, one of dozens of patients participating in the study. My involvement began with a trip up to Albany, New York, this past January, where I was scanned in an upright FONAR MRI that was outfitted with a prototype coil developed specifically to track CSF flow by Doctor Damadian, and which also utilized proprietary software to direct the scanning. After my initial scan, I was given an AO treatment, and then scanned again. Indeed, the differences between the two scans were rather dramatic. In my pretreatment scan, CSF flow was disrupted and seemed to double back and jet against my spinal cord directly at the spot where my one big lesion is located. After the AO treatment, the scan showed a much more normal flow of CSF, resulting in a larger amount of fluid separating my brain from my skull base, and a more steady flow of CSF throughout my CNS.
It’s important to note that Doctor Rosa is using his own carefully developed derivation of the original Atlas Orthogonal therapy technique, using FONAR MRI imaging to calculate very specific parameters and angles for treatment (known as “vectors”). Therefore, his approach differs from that done by other AO practitioners, so much so that it is patent pending.
I’ve been receiving weekly follow-up treatment here in New York City by Doctor Scott Bender, who is working closely with Doctor Rosa on the study, and has been trained by Doctor Rosa on these specific techniques. This is not to say that the techniques practiced by other AO chiropractors are not potentially helpful, but the precise methodology Doctor Rosa uses is, at this time, unique. If study results warrant it, Doctor Rosa plans on training many additional practitioners in his approach, but until that time the exact techniques being used in this study are generally unavailable except from the few practitioners that have already been trained under Doctor Rosa’s guidance.
Although Doctor Rosa’s study is still underway, initial results appear to be promising. Some patients are reporting symptomatic improvements, but it is still too early to draw any conclusions. My own experience has thus far not been successful, as I have not (yet) derived any benefit from treatment. I’m a very poor example by which to judge, though, since my condition is extremely atypical, and, as I’ve previously written (click here), has defied all efforts at definitive diagnosis. Additionally, my body seems to have trouble holding the AO adjustment. Some patients report staying in alignment for many weeks after adjustment; I’m generally out of adjustment by the time I go back for my weekly visit to Doctor Bender.
Although provocative, the findings and hypotheses of Doctor Rosa and his associates are sure to be controversial, for many of the same reasons that CCSVI shook things up. Both theories fly in the face of traditional MS dogma, and offer explanations for neurodegenerative disease that differ greatly from those proffered by mainstream neurology. Multiple Sclerosis is nothing if not complicated, and its pathogenesis is almost certainly multifactorial. It’s doubtful that any one theory will prove to be THE key to solving the entire MS puzzle, but, given proper attention, some of these “radical” theories may have the potential to unlock the many mysteries held by MS, even if they do so tangentially. Investigations into the widely accepted autoimmune theory have yet to offer up anything approaching a cure, and the exploration of alternative theories, done responsibly, can only benefit patients as researchers broaden their horizons and begin understand MS as not strictly an immune modulated disease confined to the CNS, but a condition involving yet to be understood degenerative mechanisms with systemic implications as well.
As always, hope is on the horizon, and patience is the key. Unfortunately, for those of us suffering from a progressively crippling disease, patience comes at a very high price.
A photograph of part of page 65, Woman's Home Companion, August, 1921, to get the 1921 Underwood logo (Photo credit: Wikipedia)
(To those who receive these posts via e-mail, this post contains several videos, which can only be viewed on the Wheelchair Kamikaze website…)
Well, how often do you get to see the word smorgasbord in print these days? Seems when I was a kid, back in the 70s, you heard the word smorgasbord a lot more. But then again, maybe it was just my family, although I don't know why a working-class Jewish family in Queens would use the word smorgasbord all that much. So, I'll go back to my original premise and suppose that smorgasbord was used in everyday conversation more back in the decade of leisure suits and disco balls, neither of which are seen much these days, either.
Actually, there was a famous commercial back then for Underwood Deviled Ham that featured a child actor who looked like a living Cabbage Patch kid, Mason Reese (click here), saying that the stuff tasted like a "borgasmord", so that might explain my associating the 70s with smorgasbords. On a side note, I once saw a teenage Mason Reese in the Museum of Natural History, and thought he'd have made a better display than patron.
Anyway, for those unfamiliar with the word, a smorgasbord is nothing more than a buffet, Swedish style. I'm not a big fan of buffets, they seem somehow unsanitary and besides, I like being waited on. And now that I'm stuck in a wheelchair and have only one working arm and hand, doing the buffet thing would probably be all kinds of difficult, so I guess I no longer need to be concerned about buffets at all. See, every cloud has a silver lining.
Okay, enough mindless prattle, here's this month's buffet of MS and disability related info, so take what you will and try not to sneeze on the rest, as other people will be reading it after you.
♦ Starting out on the ever popular CCSVI front, several studies presented at this year's annual Society of Interventional Radiology (SIR) conference demonstrated that CCSVI treatment appears to positively benefit a cohort of MS patients (click here). Like almost all studies of this type conducted thus far, these studies were done retrospectively, using patient reported outcomes, which are generally regarded as less accurate than more strict scientific research methodology. In any event, the reports generally fall in line with previously reported data, finding that the symptoms most likely to be beneficially impacted were "quality-of-life issues" such as fatigue, cognitive function, and heat sensitivity. While these tidbits are encouraging, there are more rigorous treatment trials underway, so hopefully we'll have some robust data to chew on sooner rather than later.
On the negative side, a study on mice (click here) who had their jugular veins ligated (read "snipped") found that they did not develop any nervous system dysfunction as a result of the damage to their jugulars. As mice don't ever really develop MS (the most widely used mouse model of MS isn't MS at all, but rather is an allergic reaction induced by researchers), I'm not sure how much weight to put behind these findings. I believe similar research is being done on marmosets, which kind of sucks because marmosets are really cute, but the results of marmoset research would be much more convincing.
The lead singer of the Divinyls, Christina Amphlett, has MS, and recently had CCSVI treatment (click here for video). She says that the treatment definitely benefited her, and I'm sure all of you who enjoyed her signature tune "I Touch Myself" back in the 90s will join me in wishing her well. Now, stop that or you'll go blind…
♦ Turning now to the wide world of MS drugs, it seems that the new oral drug Gilenya has taken it on the chin lately. The drug is now under review in several countries because of safety issues (click here), after a number of deaths due to cardiovascular side effects were suspected. Additionally, a patient on the drug recently developed PML (click here), although that patient had previously been on Tysabri, which somewhat clouds the picture. Since Gilenya is the first oral MS drug, its release was generally greeted warmly in the MS community, but the mechanism of the drug would appear to be somewhat troublesome. Gilenya traps T cells within the lymphatic system, thereby keeping them from patrolling anywhere in the body, which one would assume might have negative repercussions on the body's ability to fight infections and other maladies. As usual, it's a complicated picture, as Gilenya may have neuroprotective properties (click here), and such properties have long been one of the holy grails of MS research. Neuroprotection good, patient deaths bad.
In other drug news, a recent study provides evidence that the CRAB drugs don't do anything to slow MS disease progression, even though they do reduce MS relapses and white matter lesions (click here). The study spanned 10 years and looked at 262 patients. Another study showed that cannaboids (the good stuff in marijuana) inhibited disease progression in mice (click here), but, as I stated earlier, the mouse model of MS is really pretty terrible. Still, the case for medical marijuana only seems to be getting stronger, so smoke 'em if you got 'em…
♦ The Multiple Sclerosis Association of America (MSAA) does some terrific work, and has programs designed to help MS patients in financial need acquire safety and mobility equipment at little or no charge (click here). They have a similar program involving the distribution of cooling equipment (click here), which can be a godsend during the hot summer months for those of us bedeviled by heat sensitivity. If you are a US citizen struggling financially during these tough economic times, please don't be shy about taking advantage of these truly wonderful programs.
♦ Movement on Wheels (click here) is a social networking site designed specifically for wheelchair users. The site is very new, and doesn't yet have many members, but I think the idea is a great one and I wish Movement on Wheels much success. If you are a wheelchair or scooter user, I'd encourage you to check out the site and help it become a thriving community.
♦ For those interested in learning about buying wheelchair accessible vans, this site has a lot of valuable information (click here). I'm not endorsing the company that runs the site, but they have put together an impressive website chock-full of really good info, and knowledge is power.
♦ A company in Italy, Genny Mobility (click here), is marketing a wheelchair made from converted Segways. The chairs are not yet available in the US, and the website is strictly an Italian, but check out the videos to see just how cool this little beast is. Looks like riding around in one would be a hell of a lot of fun, and I appreciate the con mucho gusto attitude that the inventor/marketer displays in the videos. Here's a video of the inventor riding around with his very adorable dog, and please forgive me for subjecting you to "Who Let the Dogs Out", a tune that the world could have very easily lived without:
♦ In my never-ending quest to shine a spotlight on assholes, here are a couple of pieces about jackasses ripping off the disabled. The first (click here) involves a chap in England who seems to specialize in robbing the vulnerable, and the second (click here) details the theft of computers from a Georgia office of the NMSS. To the miscreants involved in these incidents, I wish a pox on you and all your ancestors.
Just to make up for the "Who Let the Dogs Out" thing up above, I'll leave you with a much more pleasurable listening experience. Although I don't understand a word of French (okay, maybe I understand a few words) I listen to a lot of French music. I got started on Jacques Brel (a Belgian, actually) a few years ago, and since then a wide variety of chanteurs and chanteuses have been finding their way into my ear holes. Here's one of my more recent discoveries, Emily Loizeau. The song even has a bit of English in it, expressing a sentiment I think we can all identify with:
Actually, the word "scared" hardly suffices; I guess "terrified" would more fit the bill. Fear in copious amounts might as well be listed as one of the symptoms of MS. I've talked and corresponded with hundreds of MS patients, on topics ranging from treatment options to conjecture about the nature of the disease to the day-to-day strategies we employ to simply get by, and though it's often unspoken, all of these interactions share one inexorable feature: an undercurrent of fear, at times more prominent than others, but even at its quietest, always present.
Multiple sclerosis is a diagnosis brimming with frightening features. Before getting sick, most of us had only cursory experiences inside the world of modern medicine. We'd get the flu or suffer an injury, make the obligatory trip to the doctor’s office or emergency room, and after a period of days or perhaps weeks our association with doctors and nurses would come to an abrupt and welcomed end, the arc of our lives resuming their previous trajectories. Getting hit with the diagnosis of a chronic and serious illness, though, transforms us from occasional patients to perpetual ones, and throws some nasty curves into the course of our lives. Quite suddenly we are faced with a Pandora's box of terror, which once opened spews forth a never ending stream of reasons to be frightened. From diagnostic tests to treatment options to uncertain futures, we are bombarded with physical and psychological body blows that sometimes literally leave us breathless.
When I was going through the diagnostic process, I expected that at some point there would be answers. Someone would tell me what exactly was happening to me and how to fix it. After all, it seemed that every day, on television and in newspapers, I was delightfully infomed of one momentous medical breakthrough after another, a steady stream of scientific miracles brought forth by the shiny whiz-bang machine of modern medicine. But once I found myself a reluctant resident inside that machine, entangled in it like a fly in a web, it quickly became apparent that despite all of the fancy gizmos and sometimes impenetrable terminology, there wasn't all that much substance to hold onto. Instead of concrete answers I was offered a fusillade of "I don't knows"and "We're not sure's", all delivered in a rather self-assured manner that was completely at odds with what was being said.
Although I somehow managed to maintain an outward demeanor of rationality, inside my mind reeled with the gradual realization that all those people in white coats very often more resembled the gang that couldn't shoot straight than the intricately synchronized and intellectually enlightened medical gurus whose image popular culture had propagated all these years. I felt lied to and cast adrift, not by any individual but by the system as a whole. How else is one supposed to feel when told that the only treatments available for a disease whose cause is a complete unknown were drugs whose methods of action were equally as mysterious. In the parlance of the 21st century, WTF?
Since I have progressive disease, I can only imagine the fears and anxieties that go along with the relapsing remitting flavor of MS, not knowing when going to bed whether or not your body will be functioning come the next morning. Might you wake up temporarily blind? Unable to stand? A quadriplegic? I am intimately acquainted, though, with the unholy terror of watching yourself slowly get whittled away, gradually withering on the vine as, quite consciously, the losses just continue mount. I first noticed a slight limp in my right leg almost exactly 9 years ago. Since then I've looked on in horror as that leg slowly became useless, even as my right arm and hand followed its example. Now my left arm and leg are mimicking their right sided brethren, and though internally I scream for them to stop, they appear to be intent on enacting a repeat performance, like a good child turned bad by a naughty friend. I've already watched this movie once, and I really didn't like the way it ended. Fortunately, when my right side eventually reached the point of complete incompetence, my left side was there to take up some of the slack. Now that the left side is going, well, let's just say that if I don't figure out how to grow another arm and leg, the situation might get a tad bit ugly.
What demonoid could come up with such a disease, a fiendish thing that forces you to watch yourself disappear but then doesn't have the good manners to finish you off? One of my greatest fears as a youngster, having been eleven years old when the film Jaws came out, was being eaten by a shark. Well, now I am being eaten by a shark, only it's invisible, takes its good time, and somehow lives inside me. And it's a hungry fucker, seemingly insatiable. As Sheriff Brody says in Jaws, after catching a glimpse of the huge man eater in the water, "We're going to need a bigger boat!" Problem is, none of the well-intentioned shark hunters in the white coats seems to have a clue as to where I can find myself a bigger boat. In truth, they haven't even been able to throw me a life preserver. There are no known effective treatments for progressive disease, and even the new wave of treatments now available to treat RRMS are rife with the specter of horrific side effects, bringing with them, along with their increased efficacy and hope for relief, all new reasons to be terrified.
I am constantly amazed at the courage displayed by my fellow patients. Faced with a potentially paralyzing disease, and with it a terror that can be just as paralyzing, we persevere, channeling all of that raw emotion into life, wonderful, glorious, crazy, mixed up life. Despite days when the simplest of tasks seems insurmountable, we forge ahead, maintaining whatever semblance of normalcy we can cobble together, constantly making the adjustments necessary to navigate an increasingly difficult landscape. Through the Internet and in person, we reach out to each other, offering advice, comfort, and often just the knowledge that there are others out there like us, dealing with similar hardships and plowing through the dread only a fellow sufferer can know. I've seen the emotions engendered by MS turned into incredible pieces of visual art and tremendously moving poetry and prose, all loudly expressing that we are here despite the fear, and though physically diminished our spirits remain defiant.
Sheer terror can be an energizing force, as the medical world is learning through the tremendously transformational patient advocacy being done on behalf of CCSVI research, a movement whose spirited core is animated not only by the horror of the damage the disease may wreak, but also at a dogmatic medical profession that seems stuck in neutral, unable to give up on theories that are treated as fact despite there being little or no evidence to back them. Faced with terror at what is happening to them and frustration with the inability of anybody to do anything about it, patients are educating and liberating themselves, and by doing so becoming a powerful force of self advocacy. CCSVI may or may not prove to be the turning point we fervently wish for, the jury is still out, but at the very least the patient movement behind the CCSVI tsunami has flipped the traditional patient-doctor relationship on its head, and no longer will patients placidly accept answers that simply don't make sense. It is the terror born of the disease that has emboldened patients, and all of that focused energy has shaken the walls of a medical establishment that too often puts profits ahead of people, a situation that we the terrorized will plainly stand for no longer.
In the end, when faced with a reality that the "healthy you" would have found just about unimaginable, terror is a completely rational reaction. There can be no denying it, and though sometimes it is felt more keenly than others, it is our constant companion, worn as a second skin, permeating all that we do. But terror need not be a solely negative force. As with all things in nature, the darkness of fear is accompanied by the light of courageousness, as is demonstrated every day by those of us who by sheer power of will make it through another stanza in the face of pain, weakness, and frustration, more often than not speaking nary a word of the terror within. Sometimes we cry, sometimes we scream, but most of the time we just go about our business as best we can, and that may be the most courageous act of them all.
It seems almost incredible, but it's been nearly 3 years since I wrote my first Wheelchair Kamikaze post on CCSVI (click here). At the time of that first post, CCSVI had hardly been heard of outside of some researchers in Italy and a few dozen patients debating the merits of the hypothesis on an Internet forum. Today, CCSVI has become a patient driven social media medical phenomenon. An estimated 25,000-30,000 patients have already undergone CCSVI treatment, researchers from around the world are investigating the hypothesis, and the surgical treatment of CCSVI has become a thriving industry. CCSVI has certainly come a long way, but in many ways we've only taken the first steps on what could be an epic journey.
Last week, the International Society for Neurovascular Disease (ISNVD) held its second annual scientific meeting, which lasted five full days, in Orlando, Florida. A tremendous amount of information about the nature and treatment of CCSVI was exchanged by researchers and physicians, a compendium of which can be found in a 106 page online PDF publication put out by the Society (click here).
Of most interest to patients are undoubtedly the treatment outcomes reported by several CCSVI treatment practitioners (which can be found on pages 62, 79, 83, 84, 86, and 87 of the PDF), which displayed a wide variety of treatment outcomes, but do seem to suggest several identifiable trends. It appears that quality of life issues (fatigue, cognitive issues, heat sensitivity) saw more benefit post treatment than mobility related issues, and that RRMS patients fared better than patients suffering from SPMS or PPMS. None of these studies was double blinded, all being observational and most relying on self-reported information, which can lead to inaccuracies. Still, the findings generally fall in line with some of the few double blinded studies that have been done, such as a recently completed study done in Italy (click here). CORRECTION:an anonymous reader points out that this Italian study was in fact not double blinded, and just used an independent physician to evaluate EDSS scores. Thanks for the heads up.
The meeting did bring into focus the fact that the CCSVI treatment protocol is far from standardized, with physicians varying in opinion on issues ranging from which veins to treat, whether treatment should concentrate on valves rather than the veins themselves, the use of intravascular ultrasound, and other important issues, a list of which can be found on pages 104-106 of the PDF document linked to above. There were quite a few presentations on the use of noninvasive imaging techniques (Doppler Ultrasound and MRV technology) to diagnose CCSVI, with the consensus appearing to be that neither method was especially accurate, except for extremely specialized MRV protocols that are practiced at only a few facilities. One leading CCSVI practitioner went so far as to state that he no longer requires his patients to undergo Doppler Ultrasound investigations before venoplasty, since the ultrasound results were found to be so prone to error (page 63 of the PDF).
In addition to presentations involving CCSVI treatment techniques, some important observations about the nature of the condition were also presented. The effects of reduced blood flow through the brain were discussed, as was the possible connection between bloodflow disruptions and a breakdown of the blood brain barrier, and the role of iron deposition in the MS disease process. In all, my impression (keeping in mind that I did not attend the meeting) is that the findings presented at this year's ISNVD scientific meeting were more evolutionary than revolutionary, which I suppose is something to be expected. The explosion of interest in CCSVI amongst interventional radiologists and research physicians must logically lead to attempts to fill in the many gaps of knowledge that remain in regards to CCSVI, before more dramatic leaps in understanding can be accomplished.
This eruption of interest in CCSVI within the interventional radiology community is in some ways a double-sided sword. On the plus side, it has given patients access to treatment, which in the early days was extremely hard to come by. Today, patients have their choice of treating physicians, and must do their due diligence when choosing which physician in whose hands to place themselves. As noted above, treatment techniques and philosophies vary widely from physician to physician, and patients exploring the possibility of CCSVI treatment should not be shy about asking questions in an effort to find a doctor whose treatment modality best fits their comfort level.
On the potentially negative side, CCSVI has become big business. With CCSVI treatment procedures costing about $10,000, and somewhere between 25,000-30,000 patients already treated, a little math reveals that treating CCSVI has already generated hundreds of millions of dollars in gross revenue for treating physicians. Yes, those procedures covered by medical insurance probably don't get reimbursed at the full rate charged, but this is likely made up for by patients who have undergone multiple procedures because of CCSVI's ongoing problems with restenosis. Given the fact that the number of treated patients represents only a tiny percentage of the worldwide MS population, it's easy to see that CCSVI treatment could quickly develop into a multibillion-dollar a year enterprise.
The David vs. Goliath narrative that has driven the CCSVI story thus far may soon become obsolete. To be sure, the neurology community still remains incomprehensibly steadfast in its negativity regarding CCSVI, but this is becoming counterbalanced by the enthusiasm of the interventional radiology community, and, I suspect, by the interests of the medical device manufacturers, who also stand to profit greatly should CCSVI become an accepted treatment option for MS patients. Despite the fact that very legitimate issues remain regarding the efficacy of CCSVI treatment and the lack of a consensus as to optimal interventional techniques, CCSVI treatment is being aggressively marketed by several US and international treatment facilities, which should raise some ethical questions.
Until issues with effectiveness and technique are satisfactorily answered, the CCSVI treatment procedure must be considered an experimental one, a fact that should not be lost on patients who are understandably desperate to address their illness but are faced with a dizzying array of statistics, patient testimonials, and marketing efforts by for-profit ventures. In a very real way patients who choose to undergo CCSVI treatment at the current time are guinea pigs, a fact that I understood explicitly when I underwent my venoplasty back in the dark ages of CCSVI, almost two years ago. Although we've come a long way since then, in some ways the procedure remains as experimental as ever, as physicians treat a much wider array of veins much more aggressively than they did back when I underwent the procedure. Though the treatment is a minimally invasive one, it is not without risks, as is evidenced by the contingent of patients who have experienced clotting issues and vein thrombosis in the aftermath of their procedures. Indeed, one of the presentations at ISNVD highlighted a patient whose condition worsened after treatment (page 89 of the PDF), a rare occurrence to be sure, but a possibility that must factor into the decision-making process of patients considering venoplasty.
One of the most volatile controversies raging on CCSVI forums and social media sites is whether or not the condition is a cause or effect of multiple sclerosis, with those arguing for CCSVI as cause often citing the fact that the venous abnormalities being found appear to be congenital (developed in the womb) in nature. I am unsure as to the question of cause vs. effect, although I do believe that if CCSVI is a cause of MS, it is only one of many factors involved in the initiation of the disease. Even if the vascular defects being found in the veins of MS patients are congenital, this does not necessarily mean they are a cause of multiple sclerosis. There are many congenital defects that cause no adverse effect whatsoever, and I'd venture to say that many of us have some physical trait somewhere in our bodies that is outside of normal variance.
We've all heard stories of world-class athletes suddenly collapsing during or directly after extreme physical exertion. Quite often, the follow-up story is that the unfortunate athlete was a victim of a congenital heart defect, which would never have been noticed had that person not pushed his body to physical extremes. Had they not been athletes, they very well could have lived a normal life span. Likewise, a person born with congenitally abnormal ligaments in their knees might never know of their condition unless they encounter an environmental element (such as a hit to their knees) that brings their abnormality to the fore, in the form of a knee injury more severe than that which might have been suffered by a person with "normal" ligaments. Given the varied elements that have been linked to MS (infectious agents, exposure to toxins, vitamin deficiencies, genetic markers, etc.), a likely scenario is that vascular abnormalities play a part in predisposing an individual to developing MS when exposed to an unfortunate storm of other factors.
To my mind, it is becoming increasingly clear that, despite our greatest hopes, CCSVI is only a part of a much bigger and more complex MS picture. Precisely how big a part it plays is still open to question. Although CCSVI treatment does appear to benefit many patients, it has also been shown to be of little or no value to many others. CCSVI does not explain some of the factors that have previously been established about MS, such as the geographic distribution of the disease (click here), the male-female ratio that is well known to exist in MS (click here), the existence of "multiple sclerosis clusters" (which would seem to point to an infectious cause-click here), or the unmistakable link between MS and Epstein-Barr virus (click here). Nevertheless, CCSVI offers the promise of opening up whole new areas of research into the causes of, and treatments for, multiple sclerosis. Certainly, interested MS patients should investigate the possibility of CCSVI treatment, and make a sober assessment as to whether now is the proper time for them to jump in.
There are several ongoing research projects that should further illuminate the CCSVI picture scheduled to publish results later this year, but further robust and expeditious research is desperately needed. It is essential that we ascertain just how prevalent CCSVI is in the healthy population, gain a better understanding of the role, if any, of vascular abnormalities in the MS disease process, determine which MS patients respond best to CCSVI venoplasty, refine the techniques used to treat CCSVI, reduce the number of patients who experience restenosis, and see the development of surgical implements specifically designed to treat venous abnormalities. Neurologists need to get on board to provide interdisciplinary expertise to CCSVI studies. After all, whatever the results of the research, positive or negative, answering these questions can only be in the best interest of their patients.
CCSVI has come a long way, but there is still a long way to go. Thankfully, the pace of CCSVI research is gaining momentum, and hopefully we will see answers to many of our questions sooner rather than later. In the meantime, my best advice is to educate yourself to the best of your ability, be your own most powerful advocate, and make treatment decisions based more on reason than emotion.
( For those readers who receive Wheelchair Kamikaze via email, this post contains videos, which can only be viewed on the WK website.)
As you may have noticed, I've changed the look of Wheelchair Kamikaze, more out of necessity than preference. Google's Blogger service, which hosts this blog, has been introducing new blog templates over the last year or so. Along with these new templates, some new functionalities have been added, many of which don't work with the templates originally provided by the Blogger. One of these new functionalities provides an easy way to reply to individual comments left by blog readers, which I thought would be an elegant and useful tool to utilize. Unfortunately, this new function doesn't work with the old blog template that I had been using, so, after holding out for several months, I've finally switched to one of Blogger's new designs. Not so sure that I am all that thrilled with its look and feel, so I'll probably be doing some tinkering over the next several weeks. Feel free to leave your input and or suggestions on the new design in the comments section of this post if you're so inclined.
As for this edition of Bits and Pieces, I've collected some interesting links related to CCSVI, stem cell research, and a very important new law that will finally rip away the veil of secrecy that now shields the financial monkeyshines that go on between pharmaceutical companies and the physicians that they constantly court to get them to prescribe their products.
Included in the mix is a video of Suzanne Somers talking about her boobs, so let me never be accused of not providing culturally redeeming materials…
♦ On the CCSVI front, The International Symposium on Endovascular Therapy was held this past week in Miami, Florida (click here). The symposium featured several presentations on CCSVI, including data from what I believe is the first large-scale study looking at CCSVI treatment outcomes since Dr. Zamboni first published his initial findings. This study (click here), conducted in Sicily, tracked 170 patients who underwent CCSVI angioplasty. Patients were assessed by physicians prior to treatment using the standard scale to measure MS disability (EDSS), and were asked to assess their own quality of life using a 16 item questionnaire. At the three-month point post treatment, it was found that median EDSS scores fell from 4.5 to 4.0, with patients who suffered from less disability benefiting more than patients with more severe disability. Quality of life scores followed a similar pattern, indicating that patients relatively less impacted by the disease reported greater improvements than those experiencing a more advanced disease state. Since the symptoms most often cited as being improved by CCSVI treatment are fatigue, cognitive functioning, and heat intolerance, these findings do make some sense. Patients with less advanced disease (as defined by mobility issues) often find these symptoms to be their most debilitating, whereas more severely disabled patients might not find the relief of the symptoms quite so impactful. The authors of the study note that a longer observation time and a control group are needed to confirm these findings.
♦ An interesting theory out of Australia links chlamydia pneumonia infection with CCSVI (click here). According to this theory, the venous defects and anomalies found in the veins of MS patients might not be congenital (developed in the womb), but instead may be caused by chronic inflammation due to infection with the chlamydia pneumonia bacteria. According to this hypothesis, when inflammation within the vein walls subsides, it may leave behind the webs, septums, and valvular abnormalities now being found by doctors performing CCSVI angioplasty. There has long been a small but adamant group of researchers (led by a research team at Vanderbilt University) and patients who believe that MS is caused by chlamydia pneumonia, and some of these patients have successfully treated their disease using a long-term course of combination antibiotic therapy. More info on the link between MS and CPN can be found that CPNhelp.org (click here).
The proposed link between CPN and CCSVI certainly opens the door to new areas of investigation, and highlights just how much there is left to be learned about CCSVI and its relation to multiple sclerosis. What initially seemed to be a relatively simple hypothesis with a fairly straightforward minimally invasive surgical solution is now slowly being understood to be more complex than we had originally anticipated. The treatment protocol used to alleviate CCSVI is still a work in progress, with the techniques used varying greatly from physician to physician, and the results experienced by patients who undergo the procedure varying widely as well. Unfortunately, very little scientifically valid tracking of patient results has thus far been done, so most of our evidence remains anecdotal. The discovery of the vascular abnormalities associated with MS, now called CCSVI, is, I think, an extremely important one, but it's becoming increasingly clear that CCSVI is a part of a bigger MS puzzle, one that includes not only vascular issues but also genetic predisposition, infectious exposures, and environmental factors as well.
♦ The coming 6-12 months should bring important research data from ongoing CCSVI studies, information that very well could raise as many questions as it answers, as is so often the case with scientific investigation. The upcoming second annual International Society for Neurovascular Disease (ISNVD) meetings will be held in Orlando, Florida from February 18-22nd, and should bring with it a veritable smorgasbord of CCSVI findings (click here). For those readers in the Central Florida area, a patient information program is being held on February 18 at the Orlando Hilton, and registration is now open for the event (click here). Please note, for those not in the Florida area, registration for a live webcast is also available, at the link previously provided.
♦ Here's a chance for you to get involved in CCSVI activism. Activist Karen Golden Oronte has started a letter writing campaign to members of the US Congressional MS Caucus. A list of Congress members to write to, as well as tips on what points to make in your letter, can be found on the always informative CCSVI in MS Facebook page (click here). Compared to coverage in other countries, CCSVI has received very little attention here in the US (strangely so, actually), and this letter writing campaign is a great idea for raising awareness of the issue amongst our elected representatives. So write a letter and use the tools of democracy to make our voices heard. Power to the people, right on!
♦ It seems there has recently been a palpable uptick in the number and pace of advancements being made in the field of stem cell research. One early stage study was recently completed on patients suffering from SPMS, using autologous (taken from the patients themselves) mesenchymal stem cells infused into the patient intravenously (click here). Although the study was small (10 patients) and primarily aimed at assessing the safety of this kind of stem cell treatment, it also assessed the impact of the treatment on some of the visual deficits experienced by the patients involved. After 10 months researchers were able to document several physiological improvements in the treated patients.
♦ An interesting study done on mice demonstrated that exposing older mice with MS like nervous system damage to blood taken from younger mice activated stem cells resident in the central nervous systems of the older mice, resulting in nervous system repair (click here). Although this research is in its earliest stages, this may point the way to therapies that allow the stem cells that are resident in all patients to someday be stimulated to regenerate nervous system damage done by diseases like MS. In early MS, stem cells that are already a part of the nervous system can effectively repair damage done to myelin, but this ability decreases with age and time afflicted with the disease. In this study, exposure to youthful blood increased myelin regeneration in older subjects.
♦ Another group of researchers were for the first time able to convert umbilical cord stem cells into oligodendrocytes, the central nervous system cells that produce myelin (click here). This is a very important advance, as stem cells specifically targeted at central nervous system damage would, in theory, be more effective at repairing this damage than generic stem cells when transplanted into a patient. The use of umbilical cord cells circumvents all of the moral and ethical controversies surrounding the use of embryonic stem cells, and research on these cells, as well as on adult stem cells, offers the greatest promise for rapid deployment into a clinical setting.
♦ As an American male who was a teenager in the 1970s, I can attest to the incredibly powerful effect that the jiggling Suzanne Somers, star of the sitcom Threes Company, had on the raging hormones of red-blooded American males of the era. I'm not too proud to admit that I watched the show not for the deadpan humor of Norman Fell or the comedic timing of John Ritter, but for the substantial endowments of the young Ms. Somers, which the producers of the show put to prodigious use by packing each half-hour with as many scenes of the actress dressed in tube tops or cut off T-shirts as possible. I've been aware for the last several years that Ms. Somers has been battling breast cancer, and was extremely heartened to come across this video clip, in which she explains that she appears to be winning the battle, and that an experimental stem cell treatment helped regrow one of her breasts after breast cancer surgery. Breast cancer is serious business, as is the disfigurement its treatment can leave behind, so this was all very welcomed news. Here's Suzanne Somers, happily explaining how stem cells helped her grow a boob:
♦ Under the United States' new healthcare law, sometimes derisively referred to as Obamacare, pharmaceutical companies will soon be forced to disclose the payments they make to doctors in an attempt to increase the sales of the drugs and medical devices the companies produce (click here). Physicians are routinely paid tens of thousands of dollars in "consulting fees", are treated to all expenses paid "educational symposiums" that are most often held at luxury resorts in exotic locations (where more time is spent on the golf course than in educational conferences), and are treated to expensive dinners, all in the name of "educating" them as to the merits of a particular pharmaceutical product. Analysts have found that at least one quarter of doctors routinely taking cash payments from drug or device makers, and that two thirds accept gifts of food, including lunch for staff members and dinners for themselves.
The New York Times reports that it "has found that doctors who take money from drug makers often practice medicine differently from those who do not and that they are more willing to prescribe drugs in risky and unapproved ways, such as prescribing powerful antipsychotic medicines for children." How nice.
Under the new regulations, a website will be set up on which patients can research exactly how much pharmaceutical largess their physicians have received, and thus be able to make better informed medical decisions for themselves. All I can say is, it's about freaking time…
♦ On a very sad note, one of my favorite recording artists, the incomparable Etta James, has died. Although beset with drug abuse problems for much of her life, Ms. James had an incomparable voice, one that conveyed the deepest of emotions with a simple inflection or a throaty growl. Having spent much of my career working for a major label music company, I can attest to the fact that many of today's most lauded singing stars sound no better than you or I do when warbling in the shower (you would be shocked, believe me), their careers kept aloft by the prodigious use of electronic wizardry and slick production. Not so with Etta James, who built a career in an era when actual talent and the soul of an artist were required to achieve stardom. Sleep well Etta, your powerful essence will live forever in the hearts of many, in the form of your magnificent music.
The last two months have brought a deluge of MS research data, much of it coming out of October's ECTRIMS (European Council on Treatment and Research in Multiple Sclerosis) conference, this year held in Amsterdam. While the meeting was dominated by the release of drug study data (naturally), there was also tantalizing research data revealed regarding CCSVI as well as a number of other MS related matters. I'll attempt to provide a broad overview of the recent research goings-on, and will try my best to not put readers to sleep with too much scientific mumbo-jumbo. Just in case, better grab a blanket and a pillow, because I have a feeling this is going to be long…
♦ CCSVI - On the CCSVI front, ECTRIMS appears to have been the latest venue for the ongoing pissing war that's being waged between CCSVI supporters and detractors, featuring dueling research reports, most of which are entirely based on imaging studies finding greater or lesser degrees of venous abnormalities in MS patients. To my mind, the problem with all of these studies, both pro and con, is that the imaging techniques used (MRVs and Doppler sonography) are prone to technical and/or operator error, so the wide disparity in findings may more reflect the failings of the technology then the hypothesis being explored. MRVs are highly subject to artifacting, and sonography is extremely operator dependent. While time and experience has brought more accuracy to both technologies in regards to revealing CCSVI, the fact remains that the only way to assess the state of a patient's veins with a high degree of accuracy is to actually go in and explore those vessels with an invasive (minimally) catheter venography, which so far has proved impractical for large-scale study purposes, especially when it comes to subjecting healthy subjects to a potentially (again, minimally) risky procedure.
While quite a few studies were presented that refute the theory that multiple sclerosis has a vascular component (click here), some others provided intriguing finds that support the CCSVI hypothesis. The most striking of these was a small study out of the esteemed Cleveland Clinic that compared jugular and azygos veins taken postmortem from the cadavers of MS patients and healthy control subjects. This of course begs the question, can a cadaver truly be a healthy control subject? Certainly, healthy though they might once have been, at the very least they'd be terrible guests at dinner parties. But I digress… The unique aspect of this study is that investigators were actually able to hold and examine the veins in question, the only imaging technology utilized being the ever trusty human eye (presumably aided by some type of optical magnification).
Although quite small, limited to only 13 subjects, the study hints at some rather dramatic trends (click here). The researchers looked at the veins of 7 MS and 6 non-MS subjects, and found a variety of structural abnormalities and anatomic variations. Interestingly, vein wall stenosis (narrowing) occurred in equal numbers among the MS and non-MS samples. More prevalent in the MS veins, though, were abnormalities involving malformed valves and anomalous membranes (structures such as webs and septums that shouldn't be there) which could lead to disrupted blood flow. These types of abnormalities would be difficult to spot using noninvasive imaging methods, casting further doubt on studies reliant strictly on traditional MRV in particular, and also Doppler sonography unless the operators were well-versed in protocols specifically designed reveal such anatomic irregularities.
The findings of this study, if borne out by future, larger investigations, could shed light on the wide disparity in benefit (or, often, lack of benefit) experienced by those who have undergone CCSVI venoplasty (click here for a terrific discussion of this, written by Julie Stachowiak of about.com). Many CCSVI treatment procedures, especially those done within the first year or so after knowledge of CCSVI hit the mainstream MS population, concentrated primarily on areas of venous narrowing, which the Cleveland Clinic findings suggest are not as abnormal as first thought. Since these narrowings were seen in equal numbers among MS and non-MS subjects, they may fall within the parameters of normal anatomic variation, and have little actual significance.
The high prevalence of malformed or misplaced valves and other anatomic structures within the veins of MS patients, on the other hand, could very well prove to have considerable import. Although the goal of CCSVI treatment has in large part shifted away from simply expanding narrowed veins and moved more towards clearing malformed or otherwise broken valves, aberrant membranes would in many cases be difficult to treat using the balloon venoplasty techniques currently employed to address CCSVI. In theory, some of these treatments may have coincidentally alleviated the effects of such abnormal membranes by disrupting them and compressing them against the vein walls of treated patients. If this were the case, and these membranes eventually returned to their original form, this might explain the far too common phenomenon of restenosis experienced by patients treated for CCSVI. The failure to properly treat malformed valves and abnormal and misplaced membranes within the veins might also explain the failure of CCSVI treatment to significantly benefit many of those who have undergone treatment. This of course assumes that the MS-CCSVI link exists, which despite a growing body of anecdotal evidence, still needs to be confirmed by scientifically robust studies.
The Cleveland Clinic cadaver study certainly illustrates how little we still actually know about CCSVI and the proper way to treat it, and that some of the initial assumptions upon which treatment methodologies were based might have been misguided. Certainly, should CCSVI prove to be a vital piece of the MS puzzle, CCSVI venoplasty techniques must be refined, and very likely equipment and devices specifically designed to treat the condition effectively need to be developed and put on the market. As I've mentioned in previous posts, the study and treatment of CCSVI is still in its infancy, and patients and physicians alike need to be careful not to put the cart before the horse, despite the tremendous amount of hope and excitement that CCSVI has generated.
Another interesting CCSVI research project, conducted by the Buffalo Neuroimaging Analysis Center (BNAC) looked at the phenomenon of CCSVI in healthy patients, and attempted to identify risk factors that might be involved in the development of the condition (click here). BNAC has imaged hundreds of MS patients and healthy controls, and found that CCSVI is present in roughly 25% of non-MS subjects. By pinpointing the factors that might lead to the development of CCSVI in otherwise healthy people and cross-referencing these with known risk factors for MS, the relationship between CCSVI and MS might better be assessed.
Since a picture is said to be worth a thousand words, I suppose a video made up of moving pictures would be worth several million words, so, in the interest of saving you pages and pages of reading, here is the head researcher at BNAC, Dr. Robert Zivadinov, discussing the results of this study:
Indeed, the findings of this study are fascinating, in that many of the known risk factors of MS (particularly infection with the Epstein-Barr virus) also seem to be prevalent in healthy subjects who exhibit CCSVI when subjected to noninvasive imaging techniques. As Dr. Zivadinov stated, study findings such as these only emphasize the need for continued, multidisciplinary research into the CCSVI-MS connection. My e-mail inbox sees a steady flow of notes from patients who have benefited from CCSVI treatment, but also a disturbingly high number of reports from patients disappointed in the lack of results they've experienced. The CCSVI story has only started to be written, and with more research results set to be released in the coming months, our knowledge of the condition should expand exponentially.
Perhaps the most well-known MS sufferer to undergo CCSVI treatment is Montel Williams, who recently discussed his experience in this video with the celebrity physician Dr. Oz. Unfortunately, Dr. Oz gets some of the particulars about CCSVI treatment wrong, but there certainly is value in Montel's testimony. Here is Montel's story, in his own words:
♦ Pharmaceuticals -some late stage MS drug trial results have been released recently, most describing extremely positive results. Disparaging Big Pharma is a favorite pastime of mine, and I think the pharmaceutical companies deserve all the disparaging they can get, due to their sometimes devious and deceitful ways of doing business, and their iron grip on most of the medical research that takes place in the USA. Unlike some other MS advocates, though, who disparage all Big Pharma MS products as snake oil, I've come to realize the value of the ever-expanding arsenal of disease modifying drugs. Though none of them offers anything close to a cure, for those patients who find them effective, they do increase quality of life, sometimes dramatically so. Of course, many of them do come with a laundry list of frightening potential side effects, but by reducing relapse rates and in some cases alleviating the burdens of disability, the current crop of disease modifying drugs has been a godsend to the patients on whom they are effective. Hopefully some of the newer compounds on the horizon will be all the more effective while at the same time limiting deleterious side effects.
One of the most promising new compounds is BG 12, an oral MS drug being developed by Biogen. Also known as oral fumarate, BG 12 has been shown in late stage phase 3 trials to not only dramatically decrease relapse rates and the number of lesions seen in the MRIs of treated patients, but also appears to significantly delay the progression of the disease in some patients (click here). Research results showed that BG 12 reduced relapse rates by 50% when compared to placebo, and also reduced the risk of disease progression by 38% over placebo. The drug works in a way very different than any existing MS medication, by suppressing pro-inflammatory factors called cytokines, and possibly providing some protection against nerve cell death. Encouragingly, the drug also appears to have a very benign side effect profile, with the most common side effects being gastric disturbances and diarrhea. The drug does not appear to open patients up to opportunistic infections or cancers, as do some of the other available MS pharmaceutical therapies. Given that BG 12 is an oral drug that seems to be very effective, and carries with it a relatively benign side effect profile, I expect this drug may prove to be very popular with patients and the doctors who treat them.
Genzyme announced the results of phase 3 trials of the drug Alemtuzumab, which was previously known as Campath and will be marketed under the name Lemtrada (click here). This very powerful drug is given intravenously, with infusions once a day for 5 consecutive days for the first treatment and then, a year later, 3 infusions during 3 consecutive days. Lemtrada severely depletes the human immune system, acting on both lymphocytes and monocytes, which are then reconstituted by the body, resulting in permanent changes in the immune systems of patients treated with the drug. In effect, Lemtrada "reboots" the immune system, in the hopes that the reconstituted immune system will no longer attack a patient's own nerve cells. Trial results showed Lemtrada to reduce relapse rates by 49% when compared to patients taking Rebif, along with a 42 percent reduction in the risk of sustained accumulation (worsening) of disability as measured by the Expanded Disability Status Scale (EDSS). Previous trials have shown that the effects of Lemtrada are very long-lasting, with patients showing significant benefit five years after initial treatment ended (click here). However, while these results are very impressive, Lemtrada does carry with it the risk of some serious side effects. About 16 % of treated patients develop autoimmune thyroid disease, and 1% develop a potentially lethal autoimmune blood disorder known as ITP. Because of this, patients using the drug must be carefully monitored, and use of Lemtrada may be limited to patients with highly active disease. Research is currently underway to develop ways to identify patients most at risk for the autoimmune side effects of Lemtrada, to more easily identify patients who should be excluded from this treatment option (click here).
The potential MS vaccine Tovaxin has been granted fast-track status for the treatment of SPMS by the FDA (click here). Fast-track status can cut in half the time it takes a drug to be approved, and if Tovaxin does eventually get such an approval, it will only be the second drug specifically approved for the treatment of secondary progressive multiple sclerosis in the United States. Tovaxin is a compound individualized for each patient, which desensitizes a treated patients immune system T cells to their own nerve cells, thereby stopping the autoimmune reaction (click here). Several years ago, Tovaxin failed to meet the goals of its phase 2 trials (click here), and although it had shown great promise, was left for dead. The company developing it, Opexa, later re-examined the failed trial data and determined that Tovaxin had indeed demonstrated positive effect, and now Tovaxin has risen like Lazarus, giving it (and Opexa's stockholders) new life…
A study done to assess the risk of stopping Tysabri for "drug holidays" showed that this practice significantly increases the risk of patients suffering MS relapses within six months after stoppage (click here). The idea of drug holidays came about because Tysabri is linked with PML, a potentially fatal brain infection, the risk of which increases with the amount of time a patient is on Tysabri. It was thought that taking occasional breaks from Tysabri might allow the immune system to reconstitute itself enough to combat the emergence of PML, but this study suggests that temporarily switching to another MS therapy unfortunately carries with it an increased risk of patients suffering an MS relapse. Kind of a "damned if you do, damned if you don't" scenario…
♦ Miscellaneous Studies - A variety of other MS related research results have also recently been announced. The active ingredient in the spice saffron may prove to be effective in combating MS (click here). In experiments, this ingredient was shown to combat inflammation and cell stress, at least in petri dishes and test tubes. Interestingly, saffron is often used in Asian cuisines, and the incidence of MS is much lower in Asian countries than it is here in the West. The spice tumeric (cumin) has also been shown to have strong anti-inflammatory properties, and this spice too is used heavily in some Asian cuisines. So go out and have some Indian food, it's good for you. Chicken Tikka Masala, yum…
Researchers in Sweden have discovered that young people between the ages of 16 and 20 who work overnight shifts or odd hours are twice as likely to develop multiple sclerosis as those who never worked such hours (click here). The researchers explained the sleep restriction associated with working the night shift has already been shown to increase the risk for certain health problems, including heart disease, thyroid disorders and cancer, likely by interfering with melatonin secretion and increasing inflammatory responses. Kind of an odd finding, but upsetting circadian rhythms has been shown to have an adverse effect on health, so these Swedish meatballs might be on to something…
German researchers have linked gut bacteria to multiple sclerosis (click here). We all have millions of microbes living in our guts, normally to no ill effect. However, more and more research links these bacteria to some autoimmune diseases. The researchers who did this study used mice genetically engineered to develop a Multiple Sclerosis like disease, and allowed some to develop gut bacteria, and others to remain gut microbe free. About 80% of the mice with gut bacteria went on to develop MS like symptoms, while none of the sterile mice did. While it's a far cry to go from mice to humans, this study does demonstrate that intestinal microbes do interact with the immune system, something that has long been suspected. Of course, most of the bacteria are in our guts is harmless, and some even serve a beneficial effect, but these research results certainly warrant further investigation.
Well, let's call it a wrap. There's an astounding amount of MS research being conducted, much of it driven by the huge profits to be made treating MS patients with hyper expensive drugs that tamper with the little understood human immune system. Still, as is evidenced by the last few investigations I mentioned, the breadth of MS research is quite wide, and each bit of knowledge uncovered may hold the key that finally unlocks the puzzle that is MS. Certainly, research into CCSVI has the potential to upend much of the conventional wisdom regarding the disease, and it's of the utmost importance that MS patients themselves drive such research forward, by educating themselves, advocating for energetic and innovative research into the disease, and agitating against those who stand in the way. Power to the people, y'all…
With Thanksgiving week upon us, I'm going to keep this one relatively short. Stay tuned, though, as next week I plan on posting a review of the latest in MS research, as there's been lots of important info released over the past six weeks or so. I'll cover the latest news on CCSVI, disease modifying drugs, and other MS research findings, along with the usual few dollops of opinion tossed in.
Please, don't let the inevitable tremendous anticipation of next week's post distract you from enjoying the holiday festivities. As difficult as it may be, try to stay focused on the turkey.
For those readers outside of the United States, who don't celebrate Thanksgiving this week, you'll just have to find something else to occupy your time. My European friends can busy themselves with happy thoughts about figuring out how to survive the impending collapse of the continent's economic system. Actually, we all can probably occupy our minds with such thoughts, as things aren't so hot in the US or Asia either.
WK readers in Canada, whose relatively sane economic policies have spared that country much of the turmoil roiling the rest of the world, will have to find some other distraction. Since Canadian Thanksgiving was last month, perhaps thoughts of hockey will have to suffice, or finding new and entertaining uses for maple syrup. It'll be hard to beat Sortilege (click here), though, which for the uninitiated is some pretty strong hooch made with maple syrup. BTW, kudos on the Canadian national anthem. As far as national anthems go, "Oh Canada" kicks major booty…
Okay, I said I was going to keep this short, and it's already getting long, so on with the show…
♦ A neuroimmunology researcher from the Scripps Institute sent me a note alerting me to an online petition she has started (click here), urging the US government to devote more funds to basic biomedical research at the National Institutes of Health.
I agree with her sentiments wholeheartedly, as the NIH is a precious resource that can't be left to wither on the vine, and is one of the last bastions of unbiased large-scale medical research left in the USA. The vast majority of our medical research is funded by for-profit pharmaceutical and medical device companies, who naturally devote their hard-earned bucks to research that stands a chance of turning them a huge profit. Don't get me wrong, I'm a big fan of capitalism, but money and medicine often make for terrible bedfellows. Even in this time of looming budget deficits, squeezing the NIH of funds will do nothing to solve our economic problems. Consider the following numbers:
For 2011 budget, U.S. spending on:
Social security was $2564 per citizen (20.8% of the budget)
Defense was $2203 per citizen (18% of the budget)
Medicare was $1569 per citizen (12.8% of the budget)
Medicaid was $1172 per citizen (7.8% of the budget)
NIH was $99 per citizen (0.8% of the budget)
Certainly, the funding of medical research is one of the last places we should be looking for savings. Finding newer and more effective treatments and even cures for dread diseases would pay huge dividends in the long run, both in human capital and reduced health care costs. I would think this issue is something that rational citizens across the political spectrum should be able to agree on. So please sign the petition…
♦ I recently came across an interesting new medical information website, called Medify.com (click here). The site offers links to lots of research abstracts and papers, along with patient to patient communities. A wonderful source of medical info, some of it otherwise hard-to-find, well worth checking out.
♦ Saving the best bit of medical info for last, here's some extremely exciting news: one of the nation's first multiple sclerosis stem cell therapy trials has been given the green light (click here), and should be soon underway. The Multiple Sclerosis Resource Center of New York (MSRCNY), in conjunction with the International Cellular Medicine Society (ICMS), will be conducting a 20 subject trial on patients with a definitive diagnosis of progressive MS, using mesenchymal stem cell derived neural progenitor cells, harvested from the patients' bone marrow, in an attempt to regenerate damaged nervous system tissues.
The director of the MSRCNY, Dr. Saud Sadiq, is my personal neurologist, and I know firsthand that his research facility, staffed with world-class scientists from around the world, has been hard at work for many years doing groundbreaking research in preparation for this trial. Stem cell therapy offers tremendous hope for MS patients, as it holds the promise of actually repairing the damage done by MS and restoring function lost to the disease. Let's all hope this first trial is a resounding success, one from which we all may reap tremendous benefit in the years to come. The trial is set to run for three years.
♦ I leave you with the following piece of eye candy (it's not hard on the ears, either), which is simply breathtaking. It takes 30 seconds or so to really get going, but be patient, and you'll be amazed by a stunning natural phenomenon, created by nothing more exotic than a flock of starlings…
Sorry for the delay since my last post, but I've been a bit under the weather. Nothing serious, but as my fellow MSers know, just a touch of fever can really set MS symptoms afire. It's that whole heat sensitivity thing…
I'll be working on a new post in the next several days, but rather than leave everyone hanging, I thought I'd post this interview with the Interventional Radiologist who did my attempted CCSVI treatment, Dr. Salvatore Sclafani.
A quick recap for those who've discovered Wheelchair Kamikaze since my try at liberation: I underwent a catheter venogram procedure last March, which revealed that I do have a blockage in my right internal jugular vein, but, as with everything else about my disease, it's pretty strange. Unlike most other patients found to have the venous blockages associated with CCSVI, whose abnormalities occur inside of their veins, in the form of stenosis, valve malformation, or anomalous membranes, my blockage is caused by a muscle bundle outside of the vein pressing in on it, forcing it significantly closed. This blockage can't be addressed in the usual ways, with balloon venoplasty or with a stent, so further options are being explored.
I currently have tentative plans to undergo a second procedure with Dr. Sclafani sometime early in the New Year, to recheck my entire CNS venous system, as well as take another look at the blockage in my right internal jugular. Dr. Sclafani has learned much since I underwent my procedure nine months ago, as knowledge of CCSVI and how to treat it is evolving exponentially, almost by the day. This is why I've recommended in previous posts that those with milder symptom profiles and less aggressive disease should probably hold tight and wait 6 to 12 months before pursuing CCSVI treatment, since the procedures being done now are much more sophisticated than those done just a few months ago, and those done several months from now will be all the more refined. We'll also be discovering much more about the prevalence and impact of CCSVI in the coming months, as several trials start reporting initial results.
Unfortunately, my disease continues to progress rapidly, and I believe left unimpeded it will have me bedridden within the next 12 months, so I simply don't have the time to wait. Any port in a storm, as they say…
And so, without further ado, here's Dr. Sclafani, with a comprehensive assessment of the current state of CCSVI research and treatment, including an explanation of what CCSVI is, the methods used to treat it, the uncertainties surrounding the hypothesis, reasons for optimism, and the need for healthy skepticism and realistic expectations. BTW, I did not shoot this video…
