Endless Knots

If this is true, bye-bye MS

Thanks to Clara Shih, I've just come across this article reporting on research claiming that MS has been reversed in animals, namely mice. Researchers at Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal are reporting that "a new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans."

According to the article in physorg.com:

The new treatment, appropriately named GIFT15, puts MS into remission by suppressing the immune response. This means it might also be effective against other autoimmune disorders like Crohn's disease, lupus and arthritis, the researchers said, and could theoretically also control immune responses in organ transplant patients. Moreover, unlike earlier immune-supppressing therapies which rely on chemical pharamaceuticals, this approach is a personalized form of cellular therapy which utilizes the body's own cells to suppress immunity in a much more targeted way.

GIFT15 was discovered by a team led by Dr. Jacques Galipeau of the JGH Lady Davis Institute and McGill's Faculty of Medicine. The results were published August 9 in the prestigious journal Nature Medicine.

The only proviso?

MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment's efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.

But when it was caught early, the treatment appears to be quite simple:

"It's easy to collect B-cells from a patient," he added. "It's just like donating blood. We purify them in the lab, treat them with GIFT15 in a petri dish, and give them back to the patient. That's what we did in mice, and that's what we believe we could do in people. It would be very easy to take the next step, it's just a question of finding the financial resources and partnerships to make this a reality."

Phenomenal.

Walking with MS--a triumph

Christie Beverly, who works with our friends at Strategic Knowledge Solutions, is participating in the Walk for MS, sponsored by the National Multiple Sclerosis Foundation/Hampton Roads Chapter, with the goal of raising $2000. Though I don't post many of these requests (if I did, I'd be running one every day), this issue is rather close to my heart. Please help and thanks. Here's Christie's appeal:

Why I Walk for MS

I walk because I'm a fighter. Diagnosed in 2005, I've been fighting ever since, and I refuse to let it own me. Thankfully, my case seems to be mild - at the moment - but most are not so fortunate. Not a day goes by that I don't wonder if tomorrow will be the day my MS reappears.

I walk because I have a beautiful daughter who I hope will make it through life without ever having to hear the words "You have MS."

I walk because two friends were also diagnosed this year, and I want to do everything to prevent more people from learning what it means to live with this disease.

There is no cure for multiple sclerosis, and with a diagnosis most often occurring between 20-50 years old, many people face a lifetime of uncertainty and unpredictability.

Why You Should Sponsor Me

Don't do it for me...do it for the millions out there who desperately need our help. The National Multiple Sclerosis Society will use funds collected from the MS Walk to support research for a cure tomorrow, and to provide programs that address the needs of people living with MS today.

Because we choose to walk for those who sometimes can't, because we choose to donate to walk MS, we are getting closer to the hour when no one will have to hear the words I heard four years ago and my friends heard this year -- "You have Multiple Sclerosis."

Bucky cures MS?

OK, I'm exaggerating but not by much.

Judy Siegel-Itzkovich's article, "Buckyballs may score a goal against MS," in today's Jerusalem Post, explains:

Fullerenes - molecules of pure carbon named after architect Buckminster Fuller and the spherical geodesic domes he invented - are being exploited by Tel Aviv University and Harvard Medical School researchers for the treatment of Multiple Sclerosis.

In partnership with a group including Prof. Howard Weiner from Brigham and Women's Hospital at Harvard Medical School, Dr. Michael Gozin from TAU's school of chemistry is attempting to create the next-generation MS drug based on a delivery platform of fullerenes (also known as buckyballs). They believe these tiny structures can function as "invigorating antioxidants" to keep neurons in the brain alive.

In MS, which usually attacks by the age of 40, the immune system mistakenly considers the myelin sheath around nerves as a "stranger" and attacks it, causing weakness, paralysis and lack of function. There are an estimated 350,000 Americans with MS and a few thousand Israelis with the disease. The researchers believe that fullerenes (and related carbon nanotubes) can be used in sensors and electronic applications for making much smaller and faster processors.

There's something wonderful in the idea that Bucky, "the planet's friendly genius," as he was known--and who, along with his ancestor, Margaret Fuller), has been such an inspiration to me, with MS--could possibly become the origin of its cure.

At risk of reproducing too much of this article here, I've got to drop in one more quote:

"I wanted to target with antioxidants specific receptors in the brain that are involved in the disease progress, and thus stall the deterioration of motor function in MS sufferers," Gozin says.

"We've created a molecule based on the C60 fullerene, a soccer-ball-shape with great biomedical potential," says Gozin.

This is big news, folks, because it represents a different approach to interrupting MS's progression. Antioxidants. Just what the nervous system wants.

(One last thing: remember the founding of the Fullerenes last May 23?)

--Alert to this article sent by my cousin, Alan Blank. Thanks!

Rx for writing

The real reason I went to the Poets & Writers site: Andrea Crawford's "For Writers, the Doctor's Definitely In." Excellent piece on "The literary lineage of those who pursue medicine and also write..." Crawford makes the point that doctors write ALL the time:

Physicians actually write all the time too; as Bazell ["who left a PhD program in literature to study psychiatry and whose first book, a crime novel, is forthcoming from Little, Brown this month"] noted, on a page-by-page basis, he produces more on a day he practices medicine than on a day he writes fiction. The case history, or progress note, is the basic unit of medical practice; it's something doctors work on constantly, and students learn from the first year to see a patient, hear her story, distill it into a chief complaint or main narrative, and write it down. It's not unlike the process of writing fiction, Lam ["an emergency physician whose story collection, Bloodletting and Miraculous Cures (Weinstein, 2007), was the first debut work to win Canada's Giller Prize"] says: "The art of figuring out the medical narrative is, on one hand, to be very intuitive, instinctual, open, and expansive, and, on the other hand, to be very reductionist."

"Tell me," doctors say. What great material comes their way and what a terrific way to practice the art of story-telling. All of which gives the opening to point you toward my essay, Feeling Numb, that appeared in Ars Medica.

"The voices of multiple sclerosis"

NY Times has a great little compendium of material, "The voices of multiple sclerosis," running on its interactive site. It includes six audio stories with still photos of people with MS - and a long list of comments from people like myself who have the disease. I posted a link to "Feeling Numb," my essay that came out last spring in Ars Medica, and have been pleased to see how many people have clicked through to it. A bow to Tara Parker-Pope and the other folks at The Times for pulling this together.

Socially responsible healthcare consuming?

The Boston Globe is looking into the dirty little secrets of the healthcare world around here in a two-part Spotlight series ("Spotlight Team members [are] Scott Allen, Marcella Bombardieri, Michael Rezendes, and editor Thomas Farragher, as well as Liz Kowalczyk and Jeffrey Krasner of the Globe staff. It was written by Allen and Bombardieri."]

The first article, which ran a couple of days ago, "A healthcare system badly out of balance," discloses that the same tests and procedures receive wildly different reimbursements from insurers depending on where they're done. Look and ye shall see:

So why am I posting this? Because I need an MRI. This is not an unusual situation for me - as previously revealed, I have MS and MRIs are one principal way of tracking whether more plaque is building up in the brain, which is, like plaque on your teeth, not a good thing. My wonderful, beloved, attentive (and suffering from the flu) neurologist promptly returned my call yesterday, listened to my symptoms, and said the expected, that I should subject myself to the impossible hammerjack procedure once again (painless yet intensely annoying, for those of you who haven't had it - and not for the claustrophobic, i.e. take the Valium, if they offer it).

Then I remembered the chart, where I had instantly gone to the column with the MRIs earlier this week. If I go to his hospital, it will cost my health insurer roughly twice what it would if I go to the hospital just across town. Both are excellent hospitals - though this series has lifted up another blind, i.e. in many regards, the less expensive hospitals have superior results. I don't know about MS or MRI comparisons so I won't comment. What I do now is that I have a truly superior relationship with my neurologist and that I've been astonishingly healthy under his care, i.e. why tamper with something that works?

But...here's where the socially responsible reflex comes in. Can I in good conscience cost our overburdened healthcare system another half a thou to get the results of a pretty standard procedure? Now that the info is out there, it's really hard to know how to proceed. What would you do?

"Feeling Numb" - Ars Medica

"Feeling Numb," my essay about MS in Ars Medica, Vol 4, No 1.

Download ars_medica_feeling_numb.pdf

With thanks to Allison Crawford, Ian MacKenzie, and Liz Konigshaus of Ars Medica.

Contact Ars Medica.

Pub day

Writing's rewards are protracted - a draft, 800 more drafts, waiting, acceptance, corrections, pdfs (used to be page proofs that took weeks to arrive), publication, waiting, hard copy in hand.

Two waiting last night:

The Handbook of High-Performance Virtual Teams, all 764 pages of it. Big cheers to editors Jill Nemiro, Michael Beyerlein, Lori Bradley, Susan Beyerlein - and to my fifty authors who never met. Not even a mega conference call. Virtualteamspedia. And you can download tools, frameworks and even a spreadsheet with a taxonomy for all the significant studies on virtual team leadership. Our bit is last, The Virtual, Networked Organization.

"Feeling Numb," my essay on MS in Ars Medica, the medicine, arts, and humanities journal from Mount Sinai Hospital in Toronto. Will post once scanned. Have read several stunning pieces so far - "Two Minutes with Zack: A Found Poem" by Zachary Faceman and Ben McGren, and Myra Sklarew's "Lie Perfectly Still."

Yoga: Rx for MS?

When I began my first real job as a reporter for my hometown daily, The Pottstown (Pa) Mercury, I had two regular assignments: writing up weddings and writing up obituaries. Both were compiled from forms - in the case of the former, the family filled out the details, including the description of the bride's and bridesmaids' dresses; for the latter, the funeral director would come into the newspaper, stand at the counter, and go over the details with me. The result of this early training is that I always read the obits first - and, on Sundays, I never skip the weddings in The New York Times.

Thus today I read the Boston Globe obituary of Janet Marzilli, who died of complications of Multiple Sclerosis (MS). I did not know Ms. Marzilli but I do have MS. Like so many others I've met over the years with the disease, she, according to the obit, developed many coping mechanisms, including starting a group for others with MS (ATOMS - the Association to Overcome Multiple Sclerosis). And, notably, she lived for 43 years post-diagnosis and gave birth to five children.

For anyone reading who has MS or who knows anyone else with MS, I offer this: Do yoga. I cannot claim it as a cure, for I continue to have episodes many years after my original one, but I can attest to its efficacy in reducing my symptoms. About a month ago, all the telltale signs of an episode descended - extreme fatigue, numbness in my back, legs, and feet, "banding," the sensation of terrible tightness, in my calves. Sometimes when this has happened, I've soldiered on, doing my best to ignore it. But, as I've grown up, I've come to understand that this is not the wisest approach.

This time I decided to pay attention to what I know works: laying low, meaning a lot of time in bed (ah, wireless computing) and increasing my yoga practice significantly. Significantly. For the past month, I've pushed myself to do at least an hour of yoga a day. While I cannot say my symptoms are gone, I can say that I feel immeasurably better than I did a month ago. Stronger, more energetic, and happier - and for those who know the symptoms, decreased banding, less tingling, and a whole lot less pain.

If you've never tried yoga, don't be put off by photos of people who can turn themselves intro pretzels. Even a motion so slight as bending your neck, reaching your chin toward your chest, done slowly, consciously, without strain, is a form of yoga. You can do it right now. Right here at the screen. Don't push - and, please: If you have MS, avoid the craze called "hot yoga." Heat exacerbates symptoms.