Wednesday, February 21, 2018

Tisch Center MS Stem Cell Trial: Interview with Dr. Saud Sadiq, Director and Lead Research Scientist (Part Two)


Dr. Sadiq and research staff at the Tisch Center
The Tisch MS Research Center of New York (click here) will soon begin its first-ever FDA approved Phase 2 regenerative stem cell study for multiple sclerosis. Last week, I published the first part of my interview with Dr. Saud Sadiq, the Director and Lead Research Scientist of The Center, which discussed  the Phase 1 study and its results (click here). As promised, here is the second part of our discussion, which focuses on the upcoming Phase 2 study, the Tisch Center's new stem cell laboratories, how stem cells might help repair damaged nervous system tissues, and some of the other multiple sclerosis research projects being conducted by Tisch Center researchers and scientists.
This interview has been lightly edited for readability, and I’ve added some “WK Notes,” which attempt to translate overly complicated medical jargon into plain English.

WK: The Tisch center is now preparing to embark on Phase 2 of your MS stem cell trial. When do you expect this next phase of the study to get started?

Dr. Sadiq: After the  Phase 1 study ended, we made a commitment at The Tisch Center that we needed to make our stem cell laboratories absolutely state-of-the-art. We’ve invested heavily in building a new stem cell lab, which is being completed now. Everything’s automated, it’s a next generation stem cell facility that will be functional and certified in about a month and a half. Then we will be prepared to start the Phase 2 study. We do still need some additional funding for Phase 2. We are applying to the National Multiple Sclerosis Society for a grant. Though they didn’t support Phase 1, given the impressive results of that trial we are hopeful that they will support us as we go forward. We also expect private contributions to help fund Phase 2, as these have always been the lifeblood of the foundation.

WK: How many patients will be involved in the Phase 2 study?

Dr. Sadiq: There will be 50 patients involved. It will be a double-blinded crossover study specifically designed to establish the effectiveness of the neural progenitor stem cells we've developed in our laboratories. So it has an entirely different aim than the Phase 1 sstudy, which was intended primarily to determine the safety and tolerability of our stem cell procedures. We are going to give Phase 2 study participants six treatments, one every two months. Therefore there will be more treatments given in greater frequency than in the Phase 1 study.

WK: So, with 50 patients, 25 will be getting actual stem cells, and 25 will be getting placebo treatments?

Dr. Sadiq: Yes, in the first year 25 subjects will get treatment and 25 will get placebo, and in the second year the ones who got placebo will get treatment and vice versa.

WK: What will the patient population look like for this Phase 2 trial?

Dr. Sadiq: The patients for this trial will have to meet much tighter inclusion criteria then the patients in Phase 1. They all must be diagnosed with SPMS or PPMS. They have to be ambulatory, so they’ll all have EDSS scores between 3 and 6.5. The FDA is requiring that we have an equal distribution of the EDSS scores. So there will be equal numbers of patients distributed between all the points along the EDSS scale. The other limitation is that all patients will need to have had the disease for 15 years or less.

WK: Will the study participants continue with their disease modifying drugs?

Dr. Sadiq: Yes, but they can’t have switched medications within six months from the start of the trial.

WK: Once they are in the trial they’ll have to remain on the same DMD for the duration of the study?

Dr. Sadiq: Yes.

WK: What will be the total duration of this trial?

Dr. Sadiq: There will be two years of study and placebo, and one year of follow-up. So a total of three years.

WK: Just to be clear, in the third year none of the patients will be receiving stem cells?

Dr. Sadiq: That’s correct, in the third year there will be no stem cells and no placebos. After the second year, all patients will have received six treatments. The patients who received stem cells in the first year will have placebo in the second year, and the patients who received placebo in the first year will receive stem cells in the second. The third year will be for observation of all patients.

WK: For all the folks out there with RRMS, if the Phase 2 trial proves successful then the stem cell protocol developed at Tisch could be applied to them as well, correct?

Dr. Sadiq: For patients with relapsing-remitting disease who experience a relapse that results in damage from which they don’t recover, stem cells could be introduced in an attempt to repair that damage. That would be the dream scenario, and it could render disability resulting from MS a thing of the past. But at this point were getting ahead of ourselves…

WK: As we move forward into a world in which stem cell treatments for MS become a standard of care, would you anticipate that patients will need continued and repeated stem cell treatments to maintain or advance whatever benefits they realize until a cure is finally found for multiple sclerosis?

Dr. Sadiq: Yes, that’s likely. I think the Phase 2 trial will really go a long way towards answering that question. It will be important to ascertain what happens to patients in the years after they receive their stem cells. Do they maintain their benefits, do they return to baseline, or do they fall somewhere in the middle? These will be significant findings. The design of this crossover trial will allow us to figure that out. My feeling going in is that patients will need stem cell treatments over the long-term, maybe not six a year after the initial treatment., but perhaps less frequently to maintain whatever improvement is seen.

WK: The neural progenitor cells developed by the Tisch Center – or any regenerative stem cells, for that matter – don’t directly address the disease process, correct? If so, does the disease remain active despite the use of these stem cells?

Dr. Sadiq: Yes, that’s right, the cells are not a cure for the disease. They hopefully secrete trophic factors that would stimulate the body’s own progenitor cells to activate and induce repair at sites of injury. (WK Note: trophic factors are elements which cause the body to maintain or start some action, in this case repairing damaged nerve cells and possibly affording some protection against attack from immune cells.)

WK: So, the stem cells may not necessarily repair injury all by themselves, but they may jumpstart natural repair mechanisms within the bodies of the patients in which they are implanted?

Dr. Sadiq: I think that’s the most likely mechanism. Whether they play some direct role is something we have to figure out, but I think it’s more likely that they’ll turn on a patient’s own progenitors and also create a trophic environment that acts as a shield from the immune system and allows the body to make repairs.

WK: I know that stem cells aren't the only focus of the Tisch Center's researchers and scientists. I’d like to touch on The Tisch Multiple Sclerosis Research Center of New York itself, and some of the other areas of research that are currently ongoing in The Center’s labs. Could you give us a peek inside and tell us about some of the other projects Tisch researchers are working on?

Dr. Sadiq: Well, at the Tisch Center our original goal was to identify the root cause of the disease. It may be some type of immune cell, or some unidentified infectious agent, or maybe some other environmental element. Once we can identify the cause of multiple sclerosis, we can then methodically work towards a cure. And finding a cure is our ultimate goal.

WK: So, the Tisch Center currently has researchers who spend their days searching for the root cause of multiple sclerosis?

Dr. Sadiq: Yes, absolutely. I try to focus on the real challenges that I see as a clinician treating patients every day. My focus is on trying to understand primary progressive MS, which is perhaps the most challenging form of MS as far as treatment is concerned. There are very few treatments that can alter the course of progressive MS. We’ve created an animal model in our lab to try to understand the mechanisms of progression and why remyelination does not take place at all in this form of the disease. In relapsing-remitting MS we see damage occur and then some repairs get made by the body, especially in early disease. This is something not seen in progressive MS. We need to understand the mechanisms of progression better. We are also focused on cognition dysfunction because that can really dehumanize the patients who suffer from severe cognitive deficits.

We are also hard at work identifying biomarkers that can indicate the activity and severity of the disease. We’ve published a lot of papers in this area. We are doing a lot of work on metabolic dysfunction in the central nervous system in MS, and hopefully, that will lead us to readily identify markers that can pinpoint progression and disease activity, which will, in turn, allow us to assess the effectiveness of treatments in individual patients. In conjunction to the Phase 2 stem cell study itself, one of our aims is to analyze the spinal fluid of all of the study participants for markers that may predict which patients are going to get better by Identifying which patients experience actual repair and remyelination. The goal of identifying biomarkers is to be able to tailor treatments to each individual patient, specific to them and the intricacies of their disease. MS is a very heterogeneous illness, meaning that it affects each patient differently. Through the use of biomarkers, we hope to be able to address these differences on a patient by patient basis.

WK: The Tisch Center is not affiliated with any hospital or academic institution, correct, so it’s an entirely independent research entity?

Dr. Sadiq: Yes we are completely independent. We run Tisch like an academic center in every regard. We have guest speakers and all of the activities that would be associated with typical University research centers, but we are not affiliated with any academic centers. We retain absolute independence in choosing our areas of research.

WK: If you don’t have any of these affiliations, how is all of the research we’ve discussed funded?

Dr. Sadiq: We rely entirely on grants and donations. We use almost all the funds raised directly for research. Fully 90% of all monies raised goes directly into research, which is really an extraordinarily high number compared to other organizations. We keep expenses very low, so only a small percentage of funds raised go towards administrative costs and other such overhead. All of our tax forms and documentation in this regard are available online.

WK: My understanding is that you are not currently receiving any funding at all from the National Multiple Sclerosis Society. Is this correct?

Dr. Sadiq: Yes, that's right, we’ve had some bad luck with the MS Society, but they promised to look into our Phase 2 study, and I’m putting in a grant application. Hopefully, this time they’ll get involved.

WK: Obviously, the Tisch family (click here) is involved, but where does the rest of the Center’s funding generally come from?

Dr. Sadiq: The Tisch family is a very big supporter, but so are our patients and their loved ones. We have a very loyal following of patients and their families and other supporters that really enable this to happen. They’ve been supporting us for close to two decades, even before we were formed as an independent center.

WK: How much is this Phase 2 trial going to cost?

Dr. Sadiq: The build-out of the laboratory cost $5 million, and that’s a done deal. The trial itself calls for another $4 million, and we are currently raising funds for the study itself.

WK: So funding is still needed for the Phase 2 trial?

Dr. Sadiq: Yes.

WK: Well, speaking strictly for myself as a patient who has been ravaged by this disease, I can’t think of any cause more important and worthy of donations.

Dr. Sadiq: That’s very kind. Maybe I should hire you as a fundraiser…

WK: You can pay me in stem cells… Even though I know I don’t qualify for the trial because of my  level of disability…

Dr. Sadiq: That’s true, but don’t ever lose hope. Every day researchers here at Tisch and others around the world are working hard towards solving the puzzle of MS. I’m personally obsessed with curing multiple sclerosis.



As a patient of Dr. Sadiq’s, I can attest to his obsession with curing the disease. The man works at least six out of every seven days and even has a bedroom behind his office at the clinic affiliated with the Tisch Center. The clinic is called The International Multiple Sclerosis Management Practice (click here).  I’m also acquainted with some of the researchers at the Tisch Center, who are so dedicated that they'll even put up with my incessant questions when I manage to corner one of them with my wheelchair.

For those interested in donating to the Tisch Center, you can learn about the various ways to contribute by (clicking here). If you’d like to encourage the National Multiple Sclerosis Society to get behind the first ever FDA approved Phase 2 MS stem cell trial with a nice big grant, here’s a webpage with contact info for all of the Society’s senior leadership (click here). Please be polite If you do reach out to the NMSS. As my grandmother always told me, you can catch more flies with honey than you can with vinegar…

Wednesday, February 14, 2018

Tisch Center MS Stem Cell Study: Interview with Dr. Saud Sadiq, Director and Lead Research Scientist (Part One)

The Tisch Multiple Sclerosis Research Center of New York (click here) recently published the Phase 1 results of the first-ever FDA approved multiple sclerosis regenerative stem cell study (click here). The results created quite a buzz in the MS community, as the headline results stated that 70% of trial participants experienced increased muscle strength, and 50% saw improved bladder function. As the study included only patients with progressive MS, many of them with advanced disability, these results seem especially impressive.

Given the level of interest in this trial and stem cells in general, I thought it important to interview the man behind the study, Dr. Saud Sadiq, the Director and Lead Research Scientist of the Tisch MS Research Center. Luckily, Dr. Sadiq has been my MS neuro for the last 14 years, so a simple phone call was all that was needed to set things up. Dr. Sadiq and his researchers had been working towards this Phase 1 study for over a decade. Since the Tisch Center is not affiliated with any academic or healthcare institution, all monies for the trial were raised privately through a certified nonprofit foundation.

My interview with Dr. Sadiq is quite long but full of important information, so I’ll publish it in two parts. This installment will explore the recently released Phase 1 trial results and their potential implications. The next installment will include an overview of the upcoming FDA approved Phase 2 trial, as well as a discussion of how regenerative stem cells might work and their possible impact on the treatment landscape of multiple sclerosis. It also covers some of the many different areas of groundbreaking research currently underway at the Tisch Center's laboratories. I’ll publish the second installment next week.

This interview was lightly edited for readability. I’ve included some “WK Notes”, which explain in layman’s terms some of the more complicated medical jargon used in the discussion.

WK: Dr. Sadiq, you recently published the results of your Phase I MS stem cell trial, and they look quite strong. To start, can you tell me about the patient population of the study?

Dr. Sadiq: The patient population consisted of patients with clinically definite multiple sclerosis who had either secondary progressive or primary progressive MS. They had relatively stable disability scores – we use the EDSS scale to assess disability scores – in the years preceding inclusion into the study. Their EDSS needed to have not changed in the six months proceeded the study. Of the 20 people in the study, 10 of the patients we included used wheelchairs or had EDSS of 7.0 or above, and another 10 patients had an EDSS of between 3.5 and 6.5. The majority of patients were in the more disabled category and were using aids such as canes or wheelchairs.

WK: Why didn’t the study include any relapsing-remitting patients?

Dr. Sadiq: Well, remember, this was a Phase 1 trial that was designed primarily to assess safety. Relapsing-remitting patients tend to do well with disease modifying treatments, so evaluating recovery would have been much more difficult, even though this wasn’t a primary focus of this trial.

WK: You mentioned disease modifying drugs. Were the patients chosen for the study on disease modifying drugs, and if so, did they continue them throughout the study?

Dr. Sadiq: Yes, most of the trial subjects were on the drugs we commonly use to treat MS, including Tysabri, Rituxan, and intrathecal methotrexate (WK note: intrathecal (spinal) injections of methotrexate is one of Dr. Sadiq’s preferred treatments for patients with progressive MS. He also treats many of his progressive MS patients with Rituxan).

WK: What was the age range of the patients?

Dr. Sadiq: The youngest patient was in his 20s, and the oldest were in their 60s.

WK: Let’s talk about the type of cells that were used. These were not raw mesenchymal stem cells, which are the most common type of cells used in other stem cell trials and in for-profit clinics, correct?

Dr. Sadiq: That’s right. Basically, in our laboratory, we take a patient’s bone marrow and separate out the mesenchymal stem cells. We then purify and clone them, and then freeze them for use in subsequent treatments. The cells harvested from one bone marrow extraction – we harvest from the breastbone – can be used for multiple procedures. Before the actual treatment, the cells are then grown to about 100 million mesenchymal stem cells which we then convert into neural progenitor cells, cells which are committed to a neural lineage (WK note: neural progenitor cells are stem cells specific to the central nervous system). We usually get between 5 million and 10 million neural progenitors, and that’s what we inject into the spinal fluid of the patients.

WK: What exactly are neural progenitor cells as compared to raw mesenchymal stem cells?

Dr. Sadiq: Mesenchymal stem cells have the ability to differentiate into several different types of tissues. They can turn into fat cells or cartilage cells, but they can also differentiate into heart cells and liver cells, among others. Because we were injecting cells directly into the spinal fluid, we wanted to commit them to neural lineage so they would not differentiate into other kinds of tissues once inside the patient.

WK: I understand that the transformation process that turns mesenchymal stem cells into neural progenitors is something that was developed exclusively in the Tisch Center’s laboratories?

Dr. Sadiq: Yes, we published the process in a number of papers. The details of the differentiation process were detailed in these reports.

WK: So, the details of this process aren’t a secret, they can be replicated in any stem cell laboratory?

Dr. Sadiq: Yes, between this paper and previously published papers all of the details are available.

WK: To your knowledge, though, the Tisch laboratories are the only ones using this process?

Dr. Sadiq: Yes.

WK: Let’s talk about the treatment protocol that was used in this Phase 1 trial. How many stem cell treatments did the trial subjects get, and at what time intervals?

Dr. Sadiq: In this Phase 1 trial, we used three treatments on each patient, and the treatments were given every three months. We used between five and 10 million cells for each treatment. So, in this trial of 20 patients, we did a total of 60 stem cell treatments, and roughly 80% of those involved the injection of 10 million neural progenitor cells.

WK: How long did the study last? And was there a placebo control group?

Dr. Sadiq: The trial lasted two years, and there was no placebo control group. The capacity of our laboratories at the time was a limiting factor, so we had to stagger the treatment of patients.

WK: Even though the trial lasted two years, none of the patients received more than three treatments, and they all received them at three-month intervals, correct?

Dr. Sadiq: That’s right, nobody got more than three treatments.

WK: Okay, let’s move on to the topic that’s probably of most interest to patients, the actual results that you saw from the trial. The headlines were that 70% of the patients are an increase in muscle strength and that 50% saw improvement in bladder function. Could you give us some details on those numbers?

Dr. Sadiq: I think the main thing that has to be stressed is that the study was designed to look at safety and tolerability because nobody in a trial setting had previously injected stem cells multiple times at regular intervals into patients. We really had to establish safety and tolerability. We did this successfully, as all patients received all of their treatments and tolerated them well. There were no adverse effects except for very mild headaches and fever, which were transient and generally didn’t last more than 24 hours. There were no hospitalizations and no deaths, and this safety profile was really the primary purpose of this Phase 1 study.

As to the question of efficacy, we have to be very careful because this was not a placebo-controlled or blinded study, and most of the patients expected that they would get better. What we did see when assessed by muscle exam using the standard assessment tools – which were performed by a neurologist who wasn’t involved in the administration of the cells – was that 70% of the treated patients did see an increase in muscle strength in at least one muscle group. In addition, 50% of patients had significant bladder function improvement.

WK: Did some patient groups appear to respond better than others?

Dr. Sadiq: Yes, although patients did tend to improve across the board. Not unexpectedly, the less disabled they were, the more likely they were to improve. Overall, the less disabled did better than those with higher degrees of disability. Also, the secondary progressive patients tended to do better than the primary progressive patients. But remember, these were very small numbers, only a total of 20 patients of which only four had PPMS. But generally, we saw a drop off in response rates in patients with EDSS 6.5 and above.

WK: Why do you think there was this drop-off in efficacy seen in patients with EDSS 6.5 and above?

Dr. Sadiq: I think the integrity of axons is probably a key factor in whether they will rehabilitate or not. If you still have an electrical connection, it’s easier to repair, and scar formation from lesions probably also impedes repair. The less structural damage there is, the easier it is to repair the problem.

WK: What are your thoughts on repairing the damage of patients with higher levels of disability, who currently must rely on wheelchairs?

Dr. Sadiq: I think these are our hardest challenges. Once we can figure out how to eliminate scar tissue in the central nervous system, that will really open the door (WK note: scar tissue is created by the damage done by long-standing MS lesions). At one point we were using enzymes to try to eliminate scars. Once we can understand not just remyelination but also the regeneration of axons, I think that will be the way to achieve the goal of restoring function in more disabled patients (WK Note: axons are the long threadlike part of a nerve cell along which impulses are conducted from the cell body to other cells). That’s why we are so focused in our lab in trying to figure out primary progressive multiple sclerosis.

WK: Were any of the patients complete nonresponders?

Dr. Sadiq: Yes, there were. Some of the PPMS patients as well as some of the more disabled SPMS patients.

WK: You mentioned the lack of a placebo-controlled group. I’d like for a minute to discuss the placebo effect because many patients don’t, I think, have a very good understanding of what the placebo effect actually entails. Many believe that when improvements are attributed to the placebo effect that these benefits are being disparaged as imaginary or “made up” by the patient. Could you comment on the science behind the placebo effect?

Dr. Sadiq: The placebo effect is real. It’s scientifically shown to be real. Even in cancer trials, whatever the mechanism, it’s real. It’s not simply psychological. It’s a conviction where the patient thinks they are going to get better and somehow that has a physical impact. Now whether the brain produces certain well-being cytokines or humoral factors or if you get an endocrine surge, somehow that has a positive effect that we still don’t fully understand. Since the late 1950s, the placebo effect has been recognized as a genuine phenomenon. In fact, there is a case of a cancer patient who got cured even though they had been given a placebo and not the drug being tested. So it’s not just some insignificant, mild effect. Generally, it’s considered that in any study without a placebo arm there’s about a 30% effect that can be attributed to placebo. This is real, when the patient is hopeful, the patient often feels better.

The thing about our study which is encouraging and leads me to believe the improvements we saw are not all attributable to the placebo effect is that we saw the most improvements in the patients that were the least disabled. This is something you would expect to see in a double-blind trial. In our trial, we probably chose the worst patients to study in that they had the disease for many years and most of the patients had significant disability. Our mean EDSS was 6.8 at baseline. Our average disease duration was about 18 years. These are never the patients who are chosen for pharmaceutical company studies, who are generally much less disabled and have shorter disease duration. The patients we used actually stacked the study’s chances against getting any positive effect.

WK: Just to be clear about EDSS, what’s the difference between 6.0, 6.5, and 7.0?

Dr. Sadiq: 6.0 is somebody who needs a cane to walk, 6.5 is somebody who needs bilateral assistance like a walker or bilateral crutches, and a 7.0 is a somebody who requires a wheelchair.

WK: In the trial, what kind of results did you see in patients who were EDSS 7 or above?

Dr. Sadiq: We saw two patients who had not been able to take more than a step or two who after treatment were able to walk with a walker for 25 feet. Whether that was placebo or not, I don’t know because this level of effect hard to explain. This was out of 10 patients who needed wheelchairs. It’s certainly intriguing.

WK: So two out of ten patients who hadn’t been able to ambulate at all and were entirely reliant on wheelchairs before the trial were able to walk with the aid of a walker for 25 feet after the study, correct?

Dr. Sadiq: Yes.

WK: Well, placebo or not, that seems like a remarkable result.

Dr. Sadiq: Yes, but we need to see if similar results are seen when we do the Phase 2 trial, which will be specifically designed to assess efficacy.

I hope readers have found Part One of my interview with Dr. Sadiq useful and informative. Look for Part Two next week, in which the Phase 2 study and just how the stem cells might work are explored. We’ll also talk about some of the other research currently being conducted in the Tisch Center’s laboratories.

Monday, February 5, 2018

Can A 100-Year-Old TB Vaccine Stop MS, Diabetes, and Other Diseases?

If I told you that a century-old vaccine – initially developed to combat tuberculosis – now appears capable of stopping or slowing multiple sclerosis, type I diabetes, and other autoimmune diseases by changing the workings of the immune system at the genetic level, would you think I’ve finally gone off the deep end? Well, hold onto your hats, or hair, or whatever else may be sitting on top of your head because the truth is out there (yes, I’ve been binge-watching episodes of The X-Files), the ramifications of which could change the treatment landscape for many hideous diseases.

I recently attended a presentation given to a group of neurologists and MS researchers by Dr. Denise Faustman (click here), a Harvard University medical researcher. Dr. Faustman is at the forefront of research into the Bacillus Calmette-Guerin (BCG) vaccine and in early trials has shown that the vaccine is capable of restoring dysfunctional parts of the immune system in patients with long-standing type I diabetes (click here). Dr. Faustman is currently conducting a phase 2 trial on long-term type I diabetics, with hopes of reporting results this summer.

Other studies have shown that BCG can alter the course and severity of multiple sclerosis (click here), and ongoing studies around the world indicate that the vaccine could have similar effects on a wide range of autoimmune diseases (click here), including Sjogren’s disease, fibromyalgia (click here), and immune mediated allergies. The vaccine is also the preferred treatment for a common type of bladder cancer (click here) and there are indications that BCG may dramatically reduce the incidence of leukemia in children (click here). It is even effective as a treatment for leprosy (click here)!

The BCG vaccine was developed at the beginning of the 20th century by two French scientists, Albert Calmette and Camille Guerin, work for which they were nominated for the Nobel Prize in 1928 (click here). Spurred in part by the observation that milkmaids appeared to develop tuberculosis in far lesser numbers than the general population, the two scientists developed the BCG vaccine using live but very weakened bovine (cow) tuberculosis bacteria, which makes cows sick but isn’t infectious in humans. The vaccine was first used in 1921 and although it ultimately proved to be only 20%-50% effective its use soon became widespread. It remains the only vaccine for TB and is still used extensively throughout Third World countries where TB runs rampant. The BCG vaccine is on the World Health Organization’s List of Essential Medicines.

At that time of the vaccine’s development, tuberculosis was epidemic and deadly. In the 1800s, TB caused about 25% of all deaths in Europe (click here). The disease, commonly called “consumption” back in the day, is highly contagious and has been infecting mankind since antiquity. Signs of TB have been found in human skeletal remains dating back millennia, even into prehistory. Before the Industrial Revolution and the beginnings of modern medicine, folklore had it that tuberculosis was caused by vampires. My recent X-Files binge tells me not to completely discount this theory.

BCG effect on MS
(click to enlarge)
Fast-forward to the 21st century, and modern scientists are discovering that the potential uses of the BCG vaccine go far beyond the treatment of TB. A phase 1 trial conducted by Harvard’s Dr. Denise Faustman, demonstrated that multiple injections of the vaccine given to patients with long-standing type I diabetes – an autoimmune disease – produce major changes in the immune system, restoring some back to normal, though a full cure and restoration of normal blood sugars has not yet been reported (click here). Italian researchers, using the same multiple BCG vaccination approach and the same potent strain of BCG, have demonstrated that patients given the vaccine after their first MS attack are up to 50% less likely to develop full-blown multiple sclerosis than similar patients not given BCG (click here), and that those who are eventually diagnosed with multiple sclerosis experience a more benign disease course. Click on the graphic to the left for a visual representation of BCG's effects on MS. Further studies are expected to explore whether aggressive treatment with BCG may temper or stop already established MS.

In addition, early studies indicate the vaccine can protect against allergic asthma (click here).  Retrospective studies have demonstrated that BCG may protect against a range of childhood cancers (click here). Other studies have shown that children infected with human tuberculosis bacteria before the age of seven have an extremely low incidence of developing multiple sclerosis (click here), hinting that the TB bug changes the immune system profoundly, and may impact a range of diseases.

The above benefits, as significant as they are, may only scratch the surface of BCG’s potential. The vaccine appears to work by altering the workings of the immune system at the genetic level (click here). Because it works on the genes themselves, the effects of the vaccine are long-lasting, and the vaccine's effectiveness appears to increase with time. Thus, a set of two or three vaccinations with BCG may offer robust defense against a wide variety of the autoimmune diseases that are now becoming epidemic in developed nations.

Evidence of Hygiene Hypothesis
(click to enlarge)
Tuberculosis is caused by a type of germ called mycobacteria (click here). The human immune system evolved in the presence of mycobacteria, which have been found in the bones of 70,000-year-old cave dwellers (click here). Over the last 40 or 50 years, though, as the developed world has become increasingly focused on hygiene and cleanliness, mycobacteria have been largely eliminated from the populations of First World nations. At the same time, autoimmune diseases and allergies have become epidemic in the same regions (see graphic to the right). The “old friends” or hygiene hypothesis (click here) suggests that the absence of the bugs that were our evolutionary companions has led our immune systems to go haywire.

Think of it like this: one spouse in a long married couple that first met in grade school suddenly exits the relationship. The remaining spouse is confused, disoriented, and likely to behave in unpredictable and perhaps self-destructive ways. According to the old friends hypothesis, this sort of disorientation in the immune system is driving a startling rise in diseases such as MS, lupus, diabetes, and fibromyalgia, all of which were much rarer even just 50 or 60 years ago when mycobacteria infections in humans were still common worldwide. Since BCG reintroduces mycobacteria into the body, it may help restore balance to immune systems that evolved with constant exposure to such bacteria.

Unfortunately, a variety of factors are hampering research into the benefits of BCG. Modern studies exploring the use of the vaccine to combat autoimmune and other diseases are still in their early stages, and many questions remain. The vaccine is manufactured using live but inactive bacteria, meaning its potency varies depending on the manufacturing facility. In her type I diabetes studies, Dr. Faustman uses a very potent version of the vaccine manufactured in Japan which is not available in North America. In fact, BCG isn’t available anywhere in North America, as the last BCG factory in the region stopped production in 2016, due to manufacturing issues and the low profit potential of the drug (click here). Additionally, queries regarding the number of vaccinations needed for full potency as well as the most optimal methods of safely introducing BCG into the human body are still to be answered.

The most significant impediment to the development of BCG as a therapy for autoimmune and other diseases, though, is a severe lack of funding. Since the drug is nearly a century old and quite cheap (single doses cost pennies in Third World nations) there is very little to incentivize the for-profit medical establishment to get behind the research. The reasons for this are myriad, but boil down to the obscene fact that all too often profits take precedence over patients in our current twisted model of medical research, which is more often propelled by the drive for ever-increasing revenues than by scientific imperative. Many potentially paradigm-shifting therapies like BCG have been left to die on the vine simply because they lack blockbuster profit potential. MS and diabetes have become mega industries generating yearly revenues of $25 billion each, creating a status quo that discourages disruptive innovation. We can’t kill the geese that lay the golden eggs, now, can we?

Research into the BCG vaccine holds tremendous possibilities for fundamentally changing the treatment landscape for a wide variety of terrible diseases that are being seen with dramatically increasing frequency, including multiple sclerosis. In a perfect world, or even a less imperfect one, massive resources would be devoted to investigating BCG and other treatments that hold great promise but little profit potential. Instead, innovative researchers like Dr. Faustman and her colleagues are left to work in the shadows while a seemingly never-ending stream of “me too” drugs are brought to market, fueling massive industries devoted to treating diseases, not curing them.

If only a fraction of the monies spent developing blockbuster drugs that keep patients perpetually dependent upon them were dedicated instead to seeking cures or researching innovative therapies like the BCG vaccine, modern medicine and the patients who find themselves stuck in the belly of the beast would be much better served. As they say in the X-Files, the truth IS out there. And it may just be hiding in plain sight.

Here’s a terrifically informative video of Dr. Faustman giving a presentation on her work. Definitely required viewing:







On a completely different note, I was recently interviewed for an article that appeared in The Accelerated Cure Project's latest newsletter (click here). For those who might be curious about what I actually sound like, the piece includes a link to the audio of our original interview. God, I hate the sound of my own voice, and I think it may just be impossible to say “um” and “you know” more than I do during the interview…

Monday, January 15, 2018

Some Wheelchair Kamikaze Film and TV Recommendations

Dealing with multiple sclerosis, especially as it advances, can be an all-encompassing, overwhelming pain in the buttocks. We all need our diversions and these can be increasingly hard to find as the disease diminishes access to the outside world, especially during the winter months when wonky limbs and overwhelming fatigue can make it almost impossible to get outside without assistance. Thankfully, in this age of streaming media on electronic gizmos of all shapes and sizes, there’s a seemingly infinite universe of high-quality films and TV shows available for the watching, so watch I do. Nothing like losing yourself in a great flick or binge-watching an engrossing TV series to temporarily keep thoughts of the MS beast at bay.

Last year I posted a list of some of my favorite, somewhat obscure films (click here). I figured it’s about time to put together another such inventory – especially since I’m not in the mood to write yet another essay excoriating the MS status quo or plumbing the depths of my own experience with the disease. Time enough for that later, but for now here’s a list of some of the movies and TV shows I’ve been keeping myself occupied with of late.

There are a few oldies but goodies sprinkled in here, as well as some foreign fare. For those who are put off by the prospect of subtitles, I’d urge you to give at least one or two of these suggestions a try, as I’ve found that watching foreign flicks is like virtual tourism. I love soaking in the little details and differences of life in foreign lands, from local social customs and dress to such esoterica as the differences in light switches and bathroom fixtures, even if it's only by way of TV screen. Nothing like taking a short trip to Paris or Belgium while sitting in your wheelchair, stuck in your living room wearing nothing but your skivvies. And I promise, if what you're watching is good enough, before you know it you won't even realize that you're reading subtitles.

Please feel free to comment on any of my selections or to supply a few of your own in the comments section of this post. Enjoy…

Films:

The Grand Hotel Budapest – This quirky gem by director Wes Anderson is a sheer delight. A visitor to a long in the tooth but once grand hotel is told an enchanting tale of the venue’s glory days by a stranger he meets in the lobby. The film swoops and swerves as it follows the adventures of the hotel’s once legendary concierge and his sidekick lobby boy as they traverse a fictionalized and fantasized Europe in the time between the two world wars, getting mixed up in all sorts of absurdist escapades along the way. This is kookiness and eccentricity at its best, filled with heart, sentiment, tremendous humor, and a sense of pure revelry. Available to rent from Amazon video.




Boy – from the same director as Hunt for the Wildepeople (Taiki Waititi) – which I recommended in my last list – this charmer from New Zealand is the coming-of-age story of an 11-year-old Michael Jackson obsessed Maori boy as he gets to know his miscreant father, who is just back from a stint in jail. Set in 1984, the film is original and whimsical, heartfelt and idiosyncratic, as we follow the father’s comically obsessive search for ill-gotten money he buried in a field years before, employing the help of his inept outlaw gang and his son’s friends and acquaintances. Included are priceless reenactments of some of Michael Jackson’s most famous videos, including this Maori version of “Thriller.” Available for streaming on Amazon Prime…






The Swimmer – This all but forgotten 1968 Film is perhaps more pertinent today than when it was made 50 years ago. Starring the great Burt Lancaster as what initially seems to be a gregarious and successful ad man, The Swimmer follows this character as he makes his way across a wealthy Connecticut suburb one beautiful summer day, on a quixotic quest to swim home by stopping in his neighbors’ backyards and doing one lap in each of their pools. At each stop, the reality of the character is slowly revealed, his initial polished veneer stripped away bit by bit. The film explores the shallowness of a consumerist society that defines the value of a human being by the material goods they possess and shines a light on the lies we tell to others as well as the ones we tell ourselves. Based on a John Cheever short story, some of the cinematic techniques used seem a bit dated now, a half century after the film’s production, but the themes it explores and Lancaster’s stellar performance transcend any such quibbles. Available for rent on Amazon video.


Let The Right One In – this Swedish film focuses on a bullied 13-year-old boy who is befriended by his new neighbor, a mysterious 12-year-old girl who he only sees at night, and who sometimes smells a little funny. Okay, I’ll let the cat out of the bag – she’s a vampire, but I would hardly label this a vampire film. Let The Right One In tells a story of affection, devotion, alienation, and manipulation in a stark and intimate way. Although there is some blood spilled along the way, the story is more existentialist than horrific. Beautifully shot and directed, the film is set in a desolate and icy town outside of Stockholm. This is a cerebral film that leaves plenty of room for interpretation and is one of those movies that sticks with you for quite a while after viewing. Let The Right One In was remade in an English version as Let Me In, which is also quite good but a bit more straightforward in the telling than the original. I personally prefer the Swedish version, but the two films are good enough to warrant watching both. Start with the original Swedish version, though, unless you just can’t stand the thought of subtitles. Both films are available for rent on Amazon video.


TV shows:

Broadchurch – this magnificent British crime drama features a big-city police detective with skeletons in his closet who finds himself reassigned to a small coastal town in northern England. The show is three seasons long, with eight episodes per season. Seasons one and two deal with the murder of a young boy and its aftermath, which threatens to tear all involved and the town itself apart at the seams. Season three focuses on the investigation of a sexual assault, while the principles still contend with the emotional fallout of the crime investigated in the first two seasons. This show is about as good as it gets, with acting, tone, and content all achieving perfect pitch. The characters are intricate, the writing spot on, and the scenery itself breathtaking. I can’t recommend Broadchurch highly enough. Available for streaming on Netflix.


Hotel Beau Sejour – I absolutely loved this Belgian show. Kato, an appealing young woman, wakes up to find her own murdered body in the bathtub of an old hotel undergoing renovation. Confused and disoriented, she makes her way back to town and slowly realizes that she is indeed dead, but that five of her friends and family can still see her. Determined to unravel the mystery of her murder (she can’t remember anything from the night of her death), she sets about trying to assist in the solving of the crime as best a ghost can. As Kato struggles to uncover the truth, she discovers the secrets and deceptions of nearly all involved, secrets that even those who hold them are loathe to confront. I found this 10 episode series to be addictive, so much so that binge-watching seemed to be the only option. An added bonus, for me at least, is that the characters speak Flemish, a language I’d never before heard spoken and which seems to be a mix of Dutch, German, French, and English. Again, I’d urge not to let the prospect of subtitles deter you. Though there are some lapses in logic – why does a ghost need to wear a helmet when riding a motorbike? – this is a terrific show. Available for streaming on Netflix.


The Returned – this French series is spooky and disconcerting in the best possible way. Set in a remote French town that has suffered through a series of past tragedies, the community is once again rocked when some of its dead start returning in seeming perfect health and at the same age they were when they died. They have no sense of their own deaths and have no idea how or why they were resurrected. Shot in muted colors that perfectly match the mood of the series, The Returned explores the wounds of what might have been, and whether or not that those who were once given up for lost can ever truly be fully recovered. Throw in the resumption of a series of killings that had stopped years before, and you have the makings of an engrossingly moody Gallic meditation on the circle of life and the nature of good and evil. The show is two seasons long, eight episodes per season, and is available for streaming on Netflix. (Please note, this series spawned several remakes, including an absolutely horrendous American TV network version and a word for word English translation of season one that aired on the A&E network. I haven’t seen the latter, but only one season was produced, so the A&E version does not come to any resolution. This version is also available on Netflix, though, so please make sure to pick the original French version, which was titled Les Revenants).






Glitch – this is an Australian take on The Returned. It’s a markedly different show than The Returned, absent the moodiness and mystery of the original, but is excellent in its own way. Glitch doesn’t spend much time contemplating the metaphysical ramifications of resurrection, instead placing its focus on the personal histories of seven folks who have clawed their way out of the cemetery of a small western Australian town – most are from different historical periods – and on the science that brought them back. There are some shady characters about, most connected to a suspicious pharmaceutical company located in the vicinity. Each of the resurrected has a fascinating backstory, which they only start remembering in pieces. Much of the show is driven by each character attempting to put together their own personal history and the circumstances of their death. As the show progresses, it becomes more bittersweet than spooky and evolves into more of a thriller than a study in horror or philosophy. Despite its differences from The Returned, both shows had my wife and I hooked early on. Glitch is available for streaming on Netflix, but be forewarned that to date only two seasons have been produced, with the third seemingly still up in the air. The show doesn’t come to any hard resolution, but I found it so enjoyable that it warranted a mention regardless.

Hope you enjoy some or all of these picks. As mentioned earlier, please feel free to use the comments section to voice your own opinions or offer some viewing suggestions for fellow WK readers.



WHEELCHAIR KAMIKAZE SNEAK PREVIEW: I recently conducted a 90 minute interview with a naturopathic doctor who specializes in treating MS patients. The interview is jampacked with lots of important information and actionable ideas. I should be posting the first part sometime in the next several weeks – I have a lot of transcribing in front of me – and I think this interview will be of great value to WK readers.

Sunday, December 31, 2017

New Year’s Eve Through MS Eyes

(This essay was first posted two years ago. Guess this makes it a golden not so oldie, but it's timely and the sentiments expressed will hold true as long as MS remains my unwanted life partner…)

Back in in the days before I got jumped by MS I always loved New Year’s Eve. While many of my fellow habitual night crawlers derided the night’s festivities as “amateur’s hour”, a time when those less accustomed to nocturnal hijinks were apt to get sloppy and make fools of themselves, I embraced the ringing in of the new year con mucho gusto. Never content with just one party for the duration of the night, my friends and I would go on a kind of New Year’s Eve tour, hitting four or five shindigs and nightclubs before heading home well after dawn on January 1. The sentimentality of the holiday, with its tacit promises of sins forgiven and futures bright with hope held me in its thrall.  Though I seemed to live in a state of perpetual neurotic dissatisfaction, I also brimmed with expectations that bigger and brighter days were waiting just over the horizon. New Year’s Eve was the one night a year that this heady brew of emotions and expectations were codified into celebration, to be shared with friends and strangers alike.

For sure, my fondness for the holiday has its roots in my early childhood. My mom and dad divorced when I was three, and for several years after the split my mom and I lived with my grandmother and my unmarried aunt. On New Year’s Eve my young, single mom – who herself loved the nightlife – would head out with her friends into the NYC of the swinging 60s, and my grandmother, aunt, and I would watch Guy Lombardo and his Royal Canadians playing old timey big band hits for the well-heeled crowd at the Waldorf Astoria Hotel, broadcast live to our ragged black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to a tenement than a high-rise, but our lack of means did nothing to diminish the excitement and expectations of the evening.

Though I was only four or five years old, on New Year’s Eve I was allowed to stay up till midnight to take part in a family tradition that stretched back decades. We didn’t have any fancy noisemakers or horns, but at the stroke of midnight, as confetti and balloons floated down on the well to do at the Waldorf and Guy Lombardo’s boys played “Auld Lang Syne”, my grandmother, aunt, and I grabbed sturdy but well-worn metal pots and pans. Then, using big spoons as drumsticks, we burst into the hallway of our apartment building, banging with joyous intensity on those old, scarred cooking implements, creating a raucous racket and shouting at the top of our lungs “Happy New Year’s!” Most of the other residents of the building joined us in creating a jubilant and low rent but somehow defiant cacophony, delirious and intoxicating stuff for the very young me. I daresay that for those few moments we had a lot more fun than the swells at the Waldorf.

When I grew older, as a young adult I fully embraced the revelry of the holiday. I had quite a few memorable New Year’s Eves in my late teens through my mid 20s, from seeing the new wave band The Waitresses playing a show at 5 AM at the famous Peppermint Lounge to bumming cigarettes from a then barely known Howie Mandel at an MTV “after party” that rollicked on and on as if it might never end. I recall with great fondness stumbling out of a nightclub with a group of deliriously intoxicated friends and madly howling at the moon as the last seconds ticked away on one long ago year. As I transitioned into full adulthood, mixed in with raucous annual celebrations were the occasional intimate, more romantic New Year’s get-togethers with lovers and close friends. No matter the circumstances, though, the night never passed without champagne and good cheer, and always kindled within me expectations of bigger and better things to come.

Now, nearly 13 years since I was diagnosed with Primary Progressive MS, the night carries with it a much more complex and troublesome mix of emotions. For the first several years after my creeping paralysis struck, while I was still relatively able bodied, my wife and I would host New Year’s Eve parties, more sedate than my revelries of the past but good times nonetheless. Now, with my body increasingly compromised and my stamina waning, even a small gathering of friends can prove taxing. This New Year’s it was just my wife and me watching celebrations from around the world beamed into our living room in high definition on our big-screen TV, images so crisp and detailed it seemed as though I could step right into them. That is, if I could step.

Despite my best efforts to stay fixed in the moment, I soon found it impossible to watch millions of people celebrating without enviously contrasting their situation with my own. With nary a thought given to their tremendous good fortune at simply having limbs and senses intact, the televised multitudes danced and sang, drank and strutted, laughed and hugged and mingled and voiced exuberant expectations about a future brimming with possibilities. Lubricated by flowing booze and the magic of the night, all could convince themselves that the coming days held better fortunes then those which now belonged to history.

For the healthy masses, New Year’s Eve crystallizes the reality that the future is but a blank canvas, the images to be painted on it not predetermined but subject to the will of each individual. All but the most intransigent of difficulties will give way to effort, ingenuity, and discipline. Reality is but a construct of the human mind and the emotions it creates, and as such can be born anew once the self-defeating habits of the past are no longer allowed to dictate actions in the present. Not that these kinds of changes are easy, but with sound body and mind anything – anything – is possible. Sadly, it took my getting sick for me to fully understand this, but there is no greater truth.

And here I sat in a wheelchair – a wheelchair, goddamnit – trying my best to not begrudge the healthy, to vicariously share in at least some of the delirium, to laugh along with them and not let the sneaky tears that kept making their way to the corners of my eyes expose the turmoil that roiled within. There is indeed a reason they call progressive disease progressive. Physically, this last year has been a rough one, with old symptoms getting noticeably worse and new ones breaking the surface. Activities that could be accomplished with relative ease just a year ago are now at times tortuously difficult, and some of those that had been difficult have become damn near impossible. And by activities I don’t mean anything as devilishly complicated as walking or tying a shoe, but rather firmly gripping a fork, or struggling into a sweater, or on bad days, even just staying out of bed for more than four or five hours at a time. 

Unlike those healthy New Year’s Eve revelers on TV, no amount of willpower or change of habits will arrest this bitter physical decline. Though for the most part my spirit stays strong, in the face of this insidious physical onslaught and its accompanying indignities I find it impossible to not at times give way to the weight of it all, having my breath taken away daily by the shocking realization that this is no dream that I can wake from, but instead a concrete reality in which I am being forced to watch myself slowly wither away. The mantra of “staying in the moment” does help to keep me grounded, but there are also times when the moment just sucks. Though I can and do fantasize about a future free from illness, my utter conviction to stare this bastard straight in the eyes lands such fantasies well into the realm of the far-fetched, right there alongside my old dreams of becoming the next Mick Jagger or Philip Roth.

New Year’s Eve is a time to look back and project forward, and for the healthy this shedding of the old and embracing of the new can be cathartic, if even just for a few hours. This New Year’s brought me no such respite, though, as a look back illuminated the losses suffered these past 12 months, and peering too deep into the future can be perilous, a glimpse at the dark at the end of the tunnel, a glance at an unthinkable void. 

Yet I am not without hope. I keep myself immersed in the latest research and MS news, and though much of it is, quite frankly, garbage, there are approaches that do show promise. Perhaps I am delusional, but even through this morass of illness and increasing disability my resolve to not back down sometimes bends but doesn’t break, even as I acknowledge that merely stabilizing my disease state is at this point quite a longshot. But I know for a fact that sometimes longshots do come in. After all, I’m a guy who once won $15,000 in the Florida lottery, so I’m proof positive that you’ve got to be in it to win it.

So, as I sat there watching the partiers on TV, wrestling with my complicated and disconcerting mass of emotions, when the clock struck midnight I chugged some champagne and kissed my wife, while my inner five-year-old banged on pots and pans and screamed at the top of his lungs, “Happy New Year’s!”…




Wednesday, December 20, 2017

All I Want for Christmas Is a Cure for This Damned Disease!

(For those receiving this via email, the following post contains videos which can't be viewed in email clients. Please visit the Wheelchair Kamikaze blog page to view videos (click here).)

I had a slight meltdown while serving as a semi-official MS patient advocate last week. Please let me explain…

I was invited to take part in a conference call organized by a significant multiple sclerosis consortium. The group is planning an MS conference which will take place over several days, with one of the days devoted to patients and patient education. My purpose on the call, along with several other patient advocates, was to help decide which seminar topics would be most interesting and useful for patient attendees of the planned meetings. In advance of the call I was supplied with a list of potential subjects and was told to be ready to choose which I thought should be included as part of the conference program.

As I perused the list, which included items such as "2018 MS Drug Pipeline" and "Mindfulness and MS", I found myself surprised and then increasingly angered by one glaring omission: there was no mention at all about the search for a potential cure for MS. This annoyed me to no end. After all, shouldn’t one of the primary goals of every MS Association, researcher, and neurologist be figuring out how to put themselves out of business by curing this damned disease? I thought it quite telling (and nauseating) that the planners of this MS conference hadn’t thought enough of this subject to even include it as part of the equation.

Despite assurances to myself that I would remain calm during the conference call, once it came my turn to speak I just couldn’t help myself. What began with my evenly pointing out that the prospect of a cure had somehow been overlooked quickly devolved into a sputtering, barely coherent chastisement of the entire MS medical establishment. Let’s not forget, the field of MS neurology was not so long ago considered a medical backwater, but has since been transformed into one of the biggest cash cows in all of modern medicine, all on the backs of outrageously expensive pharmaceutical products that may curtail disease activity but do absolutely nothing at all to cure MS.

Is this really where the MS status quo now resides? A place where we must accept that disease management is the best we’re going to get? Where patients struck with a hideous illness should be content or even grateful that the modern medical divinities have graced some of them with the ability to keep their potentially crippling malady in check for who knows how long? Where the torrents of cash generated by insanely priced drugs have so corrupted the MS establishment from top to bottom that the prospect of a cure seems unfit for conversation in polite company – why, for fear of spooking the goose that lays perpetual golden eggs? And what about those of us with progressive disease, who now have a whopping total of one approved drug that might, just might, slow the insidious decline of a subset of us by a less than dazzling 20%-25%? I readily admit that the disease modifying drugs currently available do dramatically improve the quality of life for many of the patients taking them– they also carry with them long lists of frightening and sometimes fatal side effects – but they do nothing at all towards stomping out MS. Forgive me for not genuflecting at the feet of the MS gods. How about this? Come up with a drug that cures my creeping paralysis and I’ll genuflect my ass off.

Some of the other patients on the conference call responded to my little tirade by saying that they’d given up hope for a cure in their lifetime. Though I do understand the frustration that lies at the root of this sentiment, to that I respectfully say “bullcrap”! Each of the top-selling MS drugs generates profits measured in billions of dollars per year; you’d think that some of that money might be spent looking for the cause of and then cure for multiple sclerosis. Instead, we have pharmaceutical companies devoting more money to marketing than to research (click here), and the funds that are spent on research are almost exclusively directed towards finding newer and better ways of manipulating the human immune system. NEWSFLASH TO MS RESEARCHERS: the aberrant immune response seen in MS patients is not the cause of the disease, it’s a symptom of some much deeper ill. Though the following analogy may be a bit of a stretch, treating MS by suppressing the immune system is like treating a broken leg with painkillers. It may make the patient feel better, but it doesn’t do a damned thing towards fixing the underlying problem.

At this point, you might rightfully ask, so, Mr. Smarty-Pants, if you’re so clever and smug and full of yourself, where would you suggest we start this quest for an MS cure? Well, I’m glad you asked. Even though I’m not a physician or researcher, I think I have a few good ideas. Here are just some of them:

  • We’ve known for years that the Epstein-Barr virus is somehow implicated in the MS disease process. In fact, there seems to be such a close relationship between EBV and MS that some researchers have gone so far as to state that if a person doesn’t have EBV, they don’t have MS (click here). Certainly, EBV alone doesn’t cause MS, but in conjunction with specific genetic predispositions, it may just be the fire starter. We now have the ability to map patients’ genomes, so shouldn’t there be at least a few researchers laser-focused on understanding the interaction between EBV and patient genetic profiles in an attempt to get to the guts of the problem? At the very least, a comprehensive database of the genetics of MS patients should be started posthaste so that gene variants and epigenetic changes can be detected and identified.
  • It’s been observed that HIV patients taking powerful antiretroviral drugs seem to develop MS in far lesser numbers than the general population (click here) and that HIV patients who already have MS often see their disease go into nearly complete remission once starting these drugs (click here). Again, why isn’t this a subject for intense scrutiny? Especially since one of the most commonly used anti-HIV drugs, AZT, has been shown to have anti-EBV properties (click here)? Please note, there was one trial of an anti-HIV drug, Raltegravir, on MS patients. This trial failed, but Raltegravir does not effect EBV.
  • HSCT, the form of stem cell therapy that first eradicates an MS patient’s immune system with strong chemotherapy drugs and then reboots it via stem cell transplant has been shown to put properly selected multiple sclerosis patients into long-term remission (click here). Shouldn’t these patients be carefully tracked and tested to see just why this treatment can be so incredibly effective? Is it simply that their reconstituted immune systems are no longer autoreactive, or might there be some other reason? Does HSCT not only put MS into remission but actually cure it, with those patients who see a resumption in disease activity somehow developing MS anew after coming into contact with some environmental trigger? The fact is that Epstein-Barr virus, when dormant, resides in immune system B cells which are wiped out during the chemotherapy-induced eradication of patient’s immune systems at the start of the HSCT process. This means HSCT rids the body of EBV. Does this allow the genetic triggers of the disease to then reset, putting a halt to the autoimmune process? A shot in the dark, maybe, but one worth examining…

  • Researchers at Harvard are currently studying the use of a century-old tuberculosis vaccine, called the BCG vaccine, to treat patients with type I diabetes, an autoimmune disease. They are reporting remarkable success, completely reversing the disease in some patients (click here). Apparently, the BCG vaccine works on both the immune system and on the genetic level, and thus could theoretically be of use not only in type I diabetes but across a broad spectrum of so-called autoimmune diseases. In fact, before the introduction of the MS disease-modifying drugs, there was promising research into the use of BCG to treat MS (click here), which seems to have been abandoned once money started rolling in from the first MS drugs. Why devote research monies to a 100-year-old vaccine that costs relative pennies when gazillions of dollars can be generated developing a never-ending stream of boutique drugs that profoundly alter the workings of the human immune system, the long-term ramifications of which are entirely unknown? As Deep Throat told Woodward and Bernstein, follow the money…

Okay, in the parlance of corporate speak, I’ve just spitballed a few ideas on which MS researchers devoted to finding a cure for the disease might focus their considerable brainpower. Of course, many of these ideas don’t have near-term blockbuster profit potential, so in the upside down world of pharmaceutical company driven medical research, they likely won’t get much attention. I’ve said it before, and I’ll say it again – capitalism is a wonderful system for creating wealth, but the marriage of capitalism and medicine is proving to be an unholy one. As long as profits take precedence over patients, as is currently the case, cures for any diseases will be rare beasts indeed.

MS organizations should never lose sight of the fact that their prime directive should be hastening their own demise by contributing to the effort to find a cure for the disease. The current status quo must not stand, and patients should not stand for it. I for one will not shut up about this topic, no matter how nuts it may make me seem to those less inclined to histrionics. If MS patients themselves don’t demand better, we will never get better, both figuratively and literally.

Oh, yeah, Happy Holidays!

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Since it is the season of giving, please allow me to recommend two MS nonprofits that are very worthy of your and your families’ and friends’ donations. I’m not suggesting the National Multiple Sclerosis Society, as, quite frankly, they have a vast contribution generating machine that sucks up lots of the cash that might be better directed at smaller MS organizations. Given the topic of this essay, I’m recommending two groups that are striving to find a cure for multiple sclerosis.

The first is the Tisch Multiple Sclerosis Research Center of New York (click here), which is currently in the process of building the largest stem cell laboratory devoted strictly to stem cells for MS, and will soon be starting the only FDA approved phase 2 stem cell trial on PwMS. In addition, the Tisch Center is involved in a wide range of groundbreaking research, from identifying MS biomarkers to understanding the root cause or causes of the disease, without an understanding of which there can be no cure.

My second pick is the Accelerated Cure Project (click here). The ACP is currently focused on the iConquerMS project, a crowdsourced database of information supplied by MS patients that will give researchers worldwide the opportunity to detect patterns and trends in the MS population that very well could provide the clues needed to come up with a cure for the disease. In addition to donating to the ACP, if you’re not already a participant in the iConquerMS project, I urge you to visit their website (click here) and start participating by answering some quick surveys. This is a patient-driven research effort and gives you a chance to join in the search for a cure.

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Finally, here’s a little Christmas present to my dear readers. The following clips are from the exquisite but little-known 1995 film “Smoke”, one of my faves.. Despite the fact that there are no explosions or car crashes, this one of my favorite scenes in all of filmdom, just one friend telling another a compelling Christmas story. Is the story true or made up, and does it matter? The scene features a masterful performance by the great Harvey Keitel playing opposite William Hurt, and touches on just about everything that makes Christmas and human beings such endlessly fascinating subjects.

Please watch both clips to get the full effect (I recommend viewing full-screen), as I couldn’t find a single clip that encompasses the entire sequence. As an added bonus, the sequence finale features one of my favorite Tom Waits songs, Innocent When You Dream. If you’re interested in watching Smoke in its entirety, it’s available for streaming on Amazon (click here). Enjoy!






Wednesday, November 22, 2017

Happy No-Thanksgiving!

Well, this year I’m in no mood for Thanksgiving. Quite frankly, the state of my life, health, and the world in general has me feeling grumpier than a starving vegan in a steakhouse. Between being increasingly decimated by a progressively crippling disease, forced to witness a nation and a planet gone mad and suffering through the worst fantasy football season I’ve had in over a decade, I find myself more inclined this year to say “no thanks” than “thanks.” So, I’ve decided to invent my own little holiday: No-Thanksgiving, a day when one can feel free to share their disdain and disgust with freedom and pride.

No-Thanksgiving coincides precisely with Thanksgiving, so those who find themselves forced this Thursday to sit around a table of people gushing with gratitude while feeling only varying shades of repulsion are hereby granted license to let loose with a bile laced torrent of grievances when it comes your turn to speak. You’ll feel a whole lot better, and you can tell the others at the table – as they look at you horrified in slack-jawed bewilderment – to pull up their big boy pants and just carve the freaking bird. And then you must swallow some air and unceremoniously burp out a hearty “Happy No-Thanksgiving!”. A burped “Happy No-Thanksgiving” is the only mandatory ritual required of those celebrating this new holiday.

So, what am I especially not thankful for this year? Oh, let the litany begin…

I am aghast at the list of famous and powerful men who have proved to be harassers and sexual abusers of women, a register that seems to grow daily like an ignored melanoma. Granted, some of the grievances committed are worse than others – in my mind, there is a world of difference between cupping someone’s butt and sexually touching a 14-year-old – but none can be considered acceptable behavior. These ongoing revelations have led me to ponder questions I never imagined I’d formulate, such as how much satisfaction can there be in forcing somebody to watch you masturbate? Back when I was healthy and single, the thrill of finding a new partner lay largely in the fact that she actually liked me. When introduced to a beautiful woman I never once had the slightest urge to corner her in a private space with the intent of forcing her to watch me pull out my Wee Willie Banjo and start strumming a tune. Definitely not my idea of making beautiful music together. The fact that women subjected to such spectacle didn’t immediately projectile vomit on the men in question is testament to the strength of the female gender. A pox on all of these degenerates, along with an especially nauseated “no thank you.”

I am horror-struck at the destructive power of my disease, which knows no bounds and defies any attempts to arrest it. This thing is Godzilla, and my life is Tokyo. It doesn’t help that during the last few months I’ve been hit with a series of flu bugs and other viruses, which are to multiple sclerosis as fine hooch is to a recovering alcoholic clinging to the edge of the wagon. The frightening thing about my getting sick with any kind of bug is that the resulting physical carnage always proves to be a preview of things to come in the not-too-distant future of my disease’s relentless progression. I’ve often surprised myself and others with my stoicism in the face of hurricane MS, but I must admit there have been moments these last few months that have left me scared shitless. Not being able to get myself in or out of bed, control my bladder, or summon up the strength to push a fork through a piece of broccoli are not exactly harbingers of a rosy future. Note to my doctors or any other doctors who happen to be out there: help! And to my disease: an emphatic no thank you!

I am driven to distraction – literally, I can’t sleep – over the abominable tax plan being rammed down the throats of the American people by Congress. I’ve always tried to keep politics off of these pages, but not speaking out against the abhorrent is the worst kind of cowardice. And these tax proposals, as currently constituted, are most certainly abhorrent. Putting aside the fact that they are yet another attempt at supply-side economics, a theory which has never, ever proven successful whenever it’s been implemented – “But, but, Reagan!” I can hear some sputtering, conveniently forgetting that President Reagan raised taxes 11 times after he initially cut them (click here) – what is really unsettling me is the fact that by all objective estimates the current tax proposals will increase the federal deficit by between $1 trillion and $2 trillion (click here, here, and here). This very likely will trigger mandatory cuts to Medicare (click here), and I fear will eventually be used as an excuse for yet another misguided push to privatize Social Security, Medicare, and Medicaid. The combined effects of these changes would leave millions of the most vulnerable Americans – the elderly, chronically ill, and disabled – without the social safety net they so desperately need. There is no doubt that the US is in need of tax reform, and getting through the process will always be as pleasant as a national root canal, but the hyper-partisan tax proposals now on the table should be anathema to all reasonable Americans. So, with all the strength I can muster, I shout “no thanks” to the current version of tax reform. If you agree, call your Representatives and Senators at (202) 224-3121.

I am a horribly disillusioned by modern medicine as it is currently practiced, rife with conflicts of interest and cynical calculations that put profits over people. Due to the explosive growth in the cost and profitability of pharmaceutical drugs, it seems the goal of modern medicine has become treating rather than curing, a model which is great for Big Pharma but sucks elephants for those of us saddled with horrible diseases. The eye-popping amounts of money generated by drugs that treat but don’t cure have insidiously transformed the landscape of medicine from top to bottom. The medical journals, increasingly reliant on Big Pharma monies for their survival, predominantly publish studies favorable to pharmaceutical company interests. These studies are usually conducted by researchers who are on the payroll of the companies whose drugs they are studying. The doctors reading these published studies are in turn very often paid handsomely in the form of shady speaking and consulting fees by the very pharmaceutical companies whose products they prescribe. In any other industry people would go to jail for this kind of crap, but in medicine, where they can perhaps do the most harm, these practices are now considered business as usual. For an insightful article on just how pernicious these shenanigans can be, (click here). So, come this Thursday’s No-Thanksgiving I will include the entire medical establishment high on my list of no thank you’s…

I’ll end my list here due to time constraints, though in my current state of disgruntlement I could easily extend it ad infinitum. No-Thanksgiving day will soon be upon us, and it wouldn’t make much sense to publish this article once the day has passed. I’d ask all who wish to join me in celebrating this new holiday to refrain from throwing a drumstick at your idiot uncle and instead help to grow the popularity of No-Thanksgiving day by providing a list of your own candidates for “no thank you’s” in the comments section of this essay. Come on, give voice to all of your pent-up grievances, grudges, and gripes so that all of your fellow MS curmudgeons can revel in your misanthropic meanderings!

To all my wonderful Wheelchair Kamikaze readers, I wish you a tremendously Happy No-Thanksgiving! And a Happy Thanksgiving to the more well-adjusted among us…

Wednesday, November 1, 2017

WK Honored – And You Can Get A Free Comprehensive Health Panel Test!

I’m pleased to announce that Wheelchair Kamikaze has been named one of Healthlabs.com’s top 25 MS blogs (click here). WK nabbed the fifth spot on the list, just behind the blogs of such huge organizations as the National Multiple Sclerosis Society, the UK’s MS Society, and the Multiple Sclerosis Association of America. While this is a tremendous honor, the best part is that Healthlabs.com is offering all US-based Wheelchair Kamikaze readers a free Comprehensive Health Panel, including blood tests and urinalysis.

Wheelchair Kamikaze has achieved success beyond anything I ever could’ve dreamed when I started these pages back in 2009. I honestly never expected more than a few dozen people to ever give this blog a gander. Now, nearly 9 years later, WK is approaching 3 million page views. Amazing. Heartfelt thanks to all Wheelchair Kamikaze readers, and of course to Healthlabs.com.

Tremendous congrats go to all the other blogs that Healthlabs’ list. Each selected blog is high-quality, entertaining, and informative, and I urge you to check each of them (click here). Healthlabs.com has provided very informative synopses of each, so their list of chosen blogs is a valuable resource in and of itself.

Now, for the really good stuff –  Healthlabs.com is generously offering free comprehensive health test panels (a $99 value – click here) to all US-based Wheelchair Kamikaze readers. This health test panel includes blood tests for lipids (cholesterol levels), a comprehensive metabolic panel, iron and total iron binding capacity tests, a thyroid panel, and a complete blood count (CBC), as well as a urinalysis.

If interested, please use the following instructions for accessing your free Comprehensive Health Test Panel:

1. Wheelchair Kamikaze readers can place their orders over the phone by calling 1-800-579-3914 . Please mention that you are calling about the free Comprehensive Health Test Panel for Wheelchair Kamikaze readers.

2. Healthlabs.com’s certified health care specialists will order a Comprehensive Health Test Panel for you free of charge over the phone.

3. Once the test is ordered, readers can simply use the lab nearest them. Healthlabs.com has a partnership with Quest Diagnostics, so users can get tested at any of 2,000 labs across the United States. Most labs are open during regular business hours, and no appointment is necessary. Readers can use Healthlabs.com’s "Find a Lab" tool (click here) to find the lab nearest them.

4. Results are delivered by email in 1-2 business days.

This offer expires on November 1, 2018.

I’d asked anybody taking advantage of this offer to please leave a few words about their experience in the comments section of this post. I’d like to keep track of how well the process goes.

Once again, a big thank you to Healthlabs.com and to all the readers that have made Wheelchair Kamikaze a popular part of the MS Internet. I’m humbled to have been able to be of service through the years to my fellow members of the MS club, one which none of us ever wanted to join. You’ve all given me some method to the madness of my experience with this disease. For that, I will forever be grateful.