Is the national multiple sclerosis society helpful or useless?

Does anyone ever feel like me, when I ask myself is the national multiple sclerosis society useless, or what?

I don't know? It just seems that every time I'm looking for support from the MS society , they deny me, an individual with MS, who is exactly who the society was designed to help, so I thought. But, they don't hesitate to ask for financial support so that they can buy wheelchairs, walkers, canes, and conditioners, etc to help us live better lives physically. Apparently, they can't see the need for mental, help guidance and support.

I was hoping that I could count on them to support my book at the annual MS conference. Hear what they had to say in an e-mail that I received from the society today.

Dear Chris,

Thank you for submitting your book, Life Interrupted: It’s Not All About Me, to the National Multiple Sclerosis Society, Central New England Chapter for review. After rigorous review by our chapter’s Clinical Advisory Committee, I regret to inform you that the chapter is unable to assist you in marketing or promoting your book.

The committee that reviewed this book is comprised of healthcare professionals, who volunteer their time in support of the chapter and people with MS. Their decision is based on the following:

§1 In most cases, it is our policy not to market or promote self-published books
§2 While everyone who has MS has a unique story to tell, it is the committee’s opinion that this narrative has a limited appeal for a broad audience
§3 Because the book endorses bee sting therapy, which is still controversial as a management technique for MS, the chapter cannot provide a forum to disseminate this information to others.
§4 The committee determined that the information listed in the book about disease modification therapies is inaccurate and incomplete, and misinforms readers about the choices and potential benefits of these treatments.

We appreciate your openness and willingness to share your personal story with others, and wish you well in your future endeavors. Coincidentally, I placed a letter to you in today's mail that also states the decision of the review committee.

Sincerely,

Linda R. Guiod, RNExec. VP, Chapter Programs and Services
National Multiple Sclerosis SocietyCentral New England Chapter101A First Avenue Suite 6 Waltham MA 02451tel + 1 781 693 5124fax +1 781 890 2089

I would love to hear your comments.

Thanks and be well,
Chris

Wed 11/14/07 The Issue Is Prevalent

Today I received two phone calls from individuals, whom I have never met who have recently read my book. The feedback was wonderful.The first call was from Mary, who suffers from multiple sclerosis and has a four-year-old who suffers from autism. He refuses to be potty trained, so life is difficult to say the least for Mary. Her MS fatigue hits her at about 1:00 in the afternoon after she has done all the morning chores like cleaning laundry, playing with, cleaning and feeding her four-year-old son. When her husband arrives home from work he accuses her of doing nothing all day because he sees her lying down nesting. Then the verbal abuse starts and ends when they go to sleep.Just because her husband can't see the illness, he refuses to think that anything wrong with Mary. That's just horrible. She doesn't know what to do. The sad thing is, this situation is so prevalent among suffers of MS.The second call came from Susan. She actually had not started reading the book yet, she couldn't get past the cover and wanted to know who did the design. Susan suffers from severe fibromyalgia and is terribly weak and exhausted after only being awake two to three hours in the morning. She, however is married to a very understanding husband of 32 years who plans on sticking by his wife's side for better or worse in sickness and health like the wedding vows state. It's nice to know when the going get's difficult there are still loving and compassionate people out there.

Related newspaper articles

Framingham, MA Sunday October 7 2007
WRITER'S hisCORNER: Life Interrupted, It’s Not A ll About Me
Holliston resident Chris M. Tatevosian has used his personal experience to pen his new book, "Life Interrupted: It's Not All About Me." Diagnosed with multiple sclerosis at a young age, Tatevosian describes how self-destructive and negative behaviors destroyed his marriage and left him with a poor-me attitude. In writing this deeply personal account, Tatevosian says in his introduction, "my hope is that you draw from (my experiences), identify similarities and avoid making the same relationship destroying mistakes (I did)."

"Life Interrupted: It's Not All About Me," by Chris M. Tatevosian, is self-published (126 pages, $12.99) and available at Amazon.com.

From: Multiple Sclerosis Foundation Internet Newsletter [mailto:lists@msfocus.org] Sent: Friday, September 28, 2007 12:34 PMTo: Subject: MSFYI - October 2007 Issue
In This Issue:* DO YOU HAVE PRIMARY PROGRESSIVE MS? * DOES TYSABRI HAVE A REBOUND EFFECT? * MS CHAT ROOM FOR KIDS * SECOND-HAND SMOKE AND RISK OF CHILDHOOD-ONSET MS * BIKE RIDERS TRAVELING IN PENNYLSVANIA AND NEW YORK * MS HOLIDAY CARDS ARE HERE!* DACLIZUMAB SHOWS BENEFIT IN PHASE II STUDY* WANT TO TALK ABOUT SEXUAL ISSUES? * GENETICS/TRAUMA CAUSATIVE FACTORS IN MS? * TRIAL EXAMINES INCREASING VITAMIN D IN MS* WRITERS WITH MS SHARE THEIR STORIES * DVD ADDRESSES ACCESS TO MEDICAL CAREWRITERS WITH MS SHARE THEIR STORIESWhat do Janice Foster, Barbara Marchant, Don McNeal and Chris Tatevosian have in common?

They all have MS and have persevered in the face of many obstacles to self-publish their stories in order to help others cope with the ups and downs of this chronic disease. Picking Up the Pieces: Rising Above a Loss Again & Again, by Janice Foster, is the story of a woman who retired at the age of 37 due to health issues associated with MS. She writes about her illness and the death of her father to encourage others to put their life back together after a loss. Her book is available at http://www.authorhouse.com.Home Team Advantage, by Don McNeal, is a story of overcoming incredible obstacles while still maintaining a positive attitude and a sense of humor. Don played pro football with the Miami Dolphins and was named Defensive Back of the Year in 1982 and 1984. Looking back over his life, Don writes, "I realize my family was my first, most important team, and in many ways my dad was my toughest coach." His book is available at http://www.powerpublishinginc.com. Dance On chronicles the lives of three very different women who share the same diagnosis: MS. Written by Pity-Us-Not MS Support Group Leader Barbara Marchant, Dance On is available at major online booksellers. Royalties benefit MSF.Life Interrupted:

It's Not all about Me, by Chris M. Tatevosian, is a candid and humble memoir about one young man's diagnosis and how his "poor-me" attitude cost him his marriage. Chris hopes others might learn from his mistakes to communicate more effectively and not allow disability and low self-worth to destroy relationships. Chris also writes about his faith in God, his experiences with bee venom therapy, and his new wife, Jane, who he married in April of 2007.