Sunday, July 11, 2010

Crisis and Discord in the World of Multiple Sclerosis, Continued

On June 28, 2010, an article about CCSVI appeared in the New York Times, the first major news outlet in the United States to provide such coverage. Written by Denise Grady, it is a succinct and balanced report on the condition, the treatment and, largely, the furor surrounding it.

I am on the fence about CCSVI and what is now referred to as the “liberation procedure” (because of the recovery, or “liberation”, that many patients have reported). The evidence at this time is primarily anecdotal and there has not been a large scale, blinded study. I also believe MS is a spectrum of diseases that will never have one single cure. However, I read the article with interest. And was stopped in my tracks by a statement attributed to Joyce Nelson, the President of the National MS Society. She was quoted as saying, in regard to the unprecedented hue and cry for this procedure:

“I wasn’t aware how thin the veneer was and how close to the surface the frustration was.”


The President of the National MS Society is not aware that MS patients ARE DESPERATE FOR EFFECTIVE TREATMENTS?!?

I wrote an outraged letter. I have never been a fan of the NMSS, although I have done the walk every year, mostly to avoid a sense of utter futility in facing this disease. But I receive a glossy magazine every two months that really offends me. It extols MS patients who climb Mount Everest or folks who are relentlessly cheerful as they claim MS is a gift that has caused them to appreciate life or people who parrot the MOST obnoxious lie of all and say “I have MS but MS doesn’t have me”. It is loaded with pharmaceutical ads, which cause me to question their neutrality. I have no place in this organization as someone whose life has been shattered by this disease and says so. You are never going to catch me saying anything but the truth: it absolutely, positively sucks. No plus side, none at all.

In my letter to Ms. Nelson I described my indignation at her seemingly oblivious remark. I cited her compensation, almost a half a million dollars, compared to mine, now practically nil despite years of work and multiple degrees. I was livid and it came out in my letter. If she had so little true knowledge of people with MS, she had no business being in her position.

This Thursday, I had some sort of bug and for the first time in ages rested the whole day, actually napping through the afternoon. And while I was sleeping, who did I get a call from but Joyce Nelson herself. She implored me to call her back, which of course I would, I am not a complete cold hearted cow. (Hey! Stop laughing!)

I was truly surprised and impressed. And embarrassed. The only important call I get in ages and I am napping for the first time in about two years. We eventually caught up with each other the following morning and had an extremely positive and, I think, encouraging, conversation.

Ms. Nelson explained she had spoken with the reporter for at least an hour, so there was far more to what she said. And, to her frustration, the one quote was not expressing what she intended at all. She told me that she was already directing change at the MSS within the framework of a five year plan, especially to embrace individuals who had progressive forms of the disease. The more she told me, the more it came clear to me that her perspective and focus, the revamping of the MSS to be more inclusive and a reconsideration of the tradition of caution in the face of new modalities, did not meet the reporter’s agenda of an article purely about CCSVI. So Ms. Grady, at the Times, utilized a statement that was not deliberately misleading or misquoting, but one that fit what she needed in the context of her article. And it did fit, because people with MS have created a passionate groundswell of faith for this procedure. That was one of the main points of the story. Besides explaining what CCSVI was, Ms. Grady was demonstrating how frantic people with MS are, that they would chance an experimental treatment with side effects like strokes and potential damage from stents that come loose and travel to the heart. It was unfortunate that while Ms. Nelson’s quote served the reporter’s purpose, it did not serve her well at all.

I was frank and told Ms. Nelson exactly what I thought of the MSS. I told her of stories from fellow MS patients, about their fruitless and frustrating negative experiences with the organization. My own experience was of offering help rather than asking for it. I sent my resume and a proposal for speaking topics several times to my local chapter, which is less than a mile from my house. I never received any follow-up. Not even a ‘no thank you’. One of these offers was relayed directly to the President of the local chapter, who also did not give me the courtesy of any response. This man has since been promoted within the organization.

Ms. Nelson expressed being heartsick at these occurrences. I have to say, I was touched by her apparent earnestness, her pride in the MS Society and her expressed desire to make the organization something that embraces all people with MS. I told her at this point, the MS Society really marginalized anyone who did not fit their glowing, denial-filled stereotype. I believe that was hard for her to hear. It would be hard not to take criticism like that personally when you have been at the helm of an organization for an extended time.

I (of course, angling for a job; communication and management is my area, after all, and I would give anything to work again), gave my input: the MS Society cannot afford to be a cautious, staid and business–as-usual organization any more. It needed a shake up, it needed to reinvent itself into something more dynamic and original. If it was me, I would not accept that the Society was not extraordinary, fresh and constantly looking for new ways to do things. This is the only way to survive in business and it is the only way they can truly serve the needs of the people they purport to be there for. People with MS have to constantly reinvent themselves. So does the MS Society.

To her credit, Ms. Nelson listened to every word I said and expressed gratitude for my honesty. She was warm and gracious and generous with her time. She may have hung up the phone and said “Oy, what a nut!”, but I don’t think so. I got the impression of sincerity and a true desire to have the MS Society be a world class, cutting edge, risk taking concern.

So, at the end of this week of drama, where are we? Well, I still don’t have a longed-for job. My house is still crumbling. CCSVI is still a wildly hot-button, controversial issue, reviled by some, tolerated by others, and pursued passionately by desperate MS patients. The MS Society did some impressive backpedaling and posted a truly informative page on the theory and procedure, even to the extent of linking some material that ultimately is not terribly flattering to them and their delay in addressing the issue. I made a positive connection with an individual in a position of influence that I believe really wants to do good; someone who wants to be an ally in the fight against this loathsome disease and is proposing an organizational paradigm shift as part of that fight.

It will be interesting to see how this all plays out.

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Pricilla said...

Well, that's something.
I guess time WILL tell.

The Mother said...

I have learned not to take seriously the short cuts given by "experts" in newsclips.

One of my friends is a true expert on childhood cystic fibrosis. She was interviewed for two hours for a news special.

They used one sentence, taken totally out of context. She no longer gives interviews to the media.

I thoroughly understand how that poor woman feels, and I'm glad you are giving her a second chance. I don't think anyone could be even halfway familiar with MS and not understand just how frustrated the patients are. I don't blame you for losing your cool with the story, but glad that the organization seems to be trying, at least.

Marie said...

Pricilla: When time tells, you can be sure I'll be telling it here too. lol I really do hope the organization improves. It has so much potential.

TM: I think almost everyone who has ever been interviewed has received a rude awakening once the words hit print.

I honestly was flabbergasted when Joyce Nelson called me. I fully expected my letter to end up in the "Crank" file. I give her enormous credit for reaching out. She deserved an opportunity to be heard.

I hope she writes to the Times clarifying her position. Obviously that will give her more exposure.

Jen said...

Have you ever considered writing your own book, with your own point of view about MS? Bright Sided is a book that talks about the 'gift' of breast cancer, the author takes your position which is 'it's not a gift'. She talks about how this attitude has permeated our society and even contributed to our current economic situation, and she makes a very compelling argument. I hope you can get a job out of this but I also think you have the makings of a great book.

Katherine said...

I have a good friend with MS, and my neighbor's son has MS. He has used bee stings for a long time.... my friend now works from home as she can't get in anymore... there needs to be a cure... the disease is just unfair. I also have a sister with Lyme disease who met someone who was diagnosed with MS and it turned out she had Lyme... ANOTHER disease not tested or treated well. I hope that the word gets out and stays out for MS patients, and that more will be done to find treatments and cures!

Marie said...

Jen: Thanks so much for your flattering comment! I am touched that you think I've got a book here. I have been giving it a lot of thought and will see what I can come up with. Thank you again.

Katherine: Thank you so much for your thoughtful comment. I am so sorry about your friend and your neighbor's son. This is a vicious disease, the gift that keeps on taking. I am grateful for your empathy and understanding. the word will get out if people keep talking about it.

Thank you for stopping by. :)

Becky said...

Very insightful - thank you. Wow, good for you for being so proactive and glad you were listened to. Loved your touching post on your son's birthday, too.

Marie said...

Thank you Becky!!

We are on the verge of becoming a mutual admiration society. lol I love your blog. It is genuinely inspiring to me and I, cranky cow that I am, am not easily inspired. You remind me, for one thing, I am not the only one who has been handed a shit sandwich and that MS is not the only awful thing that can happen out there.

Your sweet and gentle posts remind me that inspiration can be found every day in the people around us.

Margaret Welman Paez said...


Keep us all posted if there is any more follow up with this. I am glad Ms. Nelson called you (and glad you were able to nap), but I am still outraged at the overall lack of help the MS Society has to offer to people like my husband. Lots of position papers but no real push for policy change.

I too sent a letter, one to the President of husband's former employer (Fidelity) Abigail Johnson. I sent it from our own 501(c)(3) and although I sent it a month ago, I have not received a reply, so kudos to you for getting the attention of those who should already be paying attention.

Good blog and thanks,