Friday, March 11, 2011

My NFA Investigation: A Response from Joe & Jan Chambers

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Note: updated 3/11/11 at 11:20 PM.

This is These are a comment comments that appears under the post Update: I Think I Know What Happened to the National Fibromyalgia Association! I'm giving it it's them their own blog post so that everyone can read this them.

I did not write this these and at this time I choose not to respond to it them.

I would respectfully suggest that you contact me or my wife Jan Chambers directly and simply ask us yourself what questions you have rather than have hundreds of people calling our personal home line just to be told the same thing.

My wife's FM experience (for the matter our whole family's) put us on the same path as hundreds of thousands of other FM patients trying to find solutions to their pain. She is sincere in trying to give back to the FM community her time (and our money) trying to encourage more research and then get that research out to the public - to make FM patients lives better.

Your blog makes it sound like there is something sinister going on. Perhaps that is for your readers. The real problem is that it takes money to run these programs and donations in this economy are down with all charities, not just the NFA. In order to continue to provide services to the FM community a limited portion of the NFA's programs are being transferred to the NFMCPA organization. It is unfortunate that those in the FM community cannot simply cooperate rather than argue over turf.

With all due respect your blog borders on defamation and impunes a person who just wants to help. More important it consumes our (hers and mine) time and energy that could be better spent pushing for more research, education and understanding of a medical disorder that many in the world simply thinks is not real. WE KNOW IT IS REAL and moreover know first hand how it affects us and our families. My plea is for more cooperation. Call us. Get to know us before you judge our intentions. My wife has spent the last four years donating her time to this cause.

Joe Chambers
Logan, Utah
March 11, 2011 8:58 AM

It is too bad this next comment wasn't the first one submitted to my blog by the Chambers. As you can see, Joe left his comment first with a link to his law firm. Then he somehow found my unlisted telephone number and called me at home. Feeling shocked, among other things, I decided I did not have the energy to call and discuss his concerns. I replied to Jan's email at 4:31 PM PST and let her know I did not have the energy to speak with her today. I also asked that they both refrain from calling me at home.

(This is a re-submission of my earlier comment.)

Dear Selena,

Early this morning I sent an email to you asking if you would please call me on my cell phone. I have not heard from you.

Since you have all of my personal contact information, I’m wondering why you didn’t call me when you first wondered about what I was doing. The National Fibromyalgia & Chronic Pain Association (NFMCPA) website isn’t quite ready for the public to use as you could easily see. I would have happily told you what we’re working on as I am very excited about all of the great Awareness Day events we have planned in addition to the community programs.

We only get one chance to make a good first impression, and I wanted to be sure all the links were ready before the National Fibromyalgia & Chronic Pain Association made its public debut with a proper press release on March 15. My employees and I have continued to work on the website to make it something wonderful for everyone to use while you continue to make disparaging remarks and not give me the benefit of the doubt and contact me. This would have all been so pleasant if you had been truly interested in what I was doing and just called me. I have never had anything to hide—you found me easily just like many others have.

I appreciate your interest in my work and invite you to help me. Would you like to do that? I would love for you to help me. I am a volunteer—always have been. You seem to be interested in keeping the public up to date, and I value having sharp people on my team.

Tomorrow I’m serving on a panel discussion for the Utah Fibromyalgia Association until 2 PM MST. Then I’m coming back to work on the website.

Thanks and I look forward to hearing from you.

Jan Chambers

Janet Favero Chambers, President
National Fibromyalgia & Chronic Pain Association

March 11, 2011 8:29 PM

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Lori said...

So why wouldn't the NFA send out something telling its members that some of those programs were transferred? Of course, you had no way of knowing that was a home number as there has been no communication from NFA or the NFMCPA about any changes. And how can we "simply cooperate" when we don't know what's going on?

Well, this answers some questions but upfront communication would have helped a lot.

Annie Sisk said...

THIS. Yes, Lori. A thousand times "THIS."

A little upfront communication would have gone a LONG way towards defusing and smoothing over this situation.

Selena said...

@Lori and Annie - Thank you for your comments.

Please note: The contact information for Jan Chambers that I published appears on the Utah Fibromyalgia Website where anyone with Internet access can see it: http://www.nufibroconn.org/html/contact_us.html

Nhmommaof5 said...

Selena, I'm new to my diagnosis and very new in educating myself. Clear honest communication is the absolute, best policy. Thank you for bringing these things to light so I might better prepare and educate myself. My thoughts and prayers are with you. Don't over extend your self and pay the physical price. I find your insight, tips, ideas, and education to be invaluable to me. Thank you again!

Anonymous said...

I dont see inspiring leadership on fibromyalgia- but i see a lot of repeating the mistakes of the past. Wheres the inspiring leadership? Wheres the energetic plan? It would seem were making little progress for people with fibromyalgia- the falcon isnt hearing the falconer and we are slouchuing toward bethlehem in fibromyalgia care- we have failed to trouble the sleep of medicine as medicine still is not held accountable for the poor and lazy care they provide people with fibromyalgia. As the Overlapping conditions Alliance wrote modern medicine has little to offer women in pain. Machine logic and profits still guide medicine- theres been no improvement in the humanity of medicine. The dried voices of people with fibromyalgia remain mute and meaningless to the government and the health care industry. Wed better find ourselves new passionate leaders with real plans for people in fibromyalgia