Wednesday, November 21, 2007

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.


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,

1 comment:

Vivian said...

Chris, I totally agree with you and I posted about this today on my blog. I hope you are doing well today. Big hugs to you and your family.