Friday, March 11, 2011

Update: I Think I Know What Happened to the National Fibromyalgia Association!

Nicolas R├ęgnier: Allegory of Vanity — Pandora,...Image via Wikipedia
So right about now I am feeling like Pandora right after she opened that box full of all sorts of bad things.

I want to give you a head's up on some recent, very eye-opening discoveries I have made. Unfortunately, they only raise more questions than answers...

On March 2nd, I got an email from newletter@fmaware.org with a link to something called the FM-Chronic Pain News Report. As I mentioned before, the link took me to a website that had the name National Fibromyalgia and Chronic Pain Association in the bottom left corner. That was a surprise to me since the publication featured the logo of the NFA. I was also suspicious because this news report specifically states that this publication will only be available by paid subscription in the near future.

When I went back a second time today, I noticed that the URL of the link began with http://www.nfmcpa.org. So I deleted everything that came after that and found a website that appears to be under construction. I discovered who owns this site after clicking a link that says About AFMCP - Our History at the bottom right:
The Association for Fibromyalgia & Chronic Pain is a 501(c)3 not for profit organization founded by Jan Chambers, who developed the Utah Fibromyalgia Association. We work to support people who have chronic pain illnesses and their families and friends by contributing to caring, professional, and community relationships. Through continuing education, networking with support groups/advocates, and affiliation with professional organizations, the members of the Association for Fibromyalgia & Chronic Pain have a place to be informed, get involved, and recognize achievements.
Does this mean that the Association for Fibromyalgia & Chronic Pain and Jan Chambers have taken over the National Fibromyalgia Association?

If so, why haven't they come right out and said so?

My husband got an email from newsletter@fmaware.org on March 9th. I have not idea why he got the email and not me. That email was a "Special E-Alert" with the subject line FM Aware Newsletter. Using the NFA logo, it was an advertisement for something called Fibro Innovations and a Dr. Cory Kingston. I went to the website of Fibro Innovations and wouldn't you know, they linked right back to that FM-Chronic Pain News Report I mentioned above.

Seems The>Association for Fibromyalgia & Chronic Pain a.k.a the National Fibromyalgia and Chronic Pain Association a.k.a the National Fibromyalgia Association did an in-depth report on Dr. Kingston in the FM-Chronic Pain News Report and then turned around and sold him advertising access to the NFA email mailing list.

I don't know about you, but I am seeing red right now.

My advice: do not trust anything that comes disguised as the National Fibromyalgia Association because I do not believe it is the NFA we have know and relied upon anymore.

In addition, I have learned that "Jan Chambers" is actually Janet Favero Chambers of the Utah Fibromyalgia Association.

I think it is time for all of us to contact Janet and let her know we are on to her and her deceptive practices. You can email her at jan@nufibroconn.org, write her at Utah Fibromyalgia Association, 31 Federal Avenue, Logan, UT 84321, call her at 435-753-4148 or fax her at 435-752-3556. (ADDENDUM: See a response from Joe Chambers here.)

Let me also say "Shame on you!" to Lynn Matallana and the Board of Directors of what I suspect is the now defunct National Fibromyalgia Association for their role in this deception. They should have been clear with the previous clients and donors associated with the NFA about this transition of services to another non-profit agency.

Boy, do I want to hear what you have to say now.

ADDENDUM: Based on the first comment I received on this post, I have discovered that the FM-Chronic Pain News Report is published by a company called Cause Marketing, LLC. I went to the Cause Marketing, LLC website.

On the About page, it says:

Cause Marketing, LLC is a boutique public relations and marketing agency specializing in aligning your business with not-for-profit organizations for increased awareness and to improve sales and goodwill.

As an Affinity Company of the National Fibromyalgia Association, Cause Marketing, LLC is uniquely positioned to effectively reach the significant Fibromyalgia and other chronic pain illness markets – millions of individuals anxious to learn about your products and services!
Then I was shocked to see on the contact page that the email for this company is LMatallana@4CauseMarketing.com. The rest of the contact information is: telephone: (714) 414-6552; address: 2578 N. Courtland, Orange, CA 92867.

So is L. Matallana selling the NFA email database of persons living with fibromyalgia to everyone and anyone willing to pay?!?

So maybe the Association for Fibromyalgia & Chronic Pain and Jan Chambers didn't take over the National Fibromyalgia Association, they just purchased the email database and the rights to use the NFA logo. This is still a deceptive practice and still worthy of your complaints to Jan Chambers.
Please feel free to send L. Matallana an email and let her know what you think of this new money-making endeavor conducted under the auspices of the NFA.

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Anonymous said...

Selena, I received the FM-Chronic Pain News Report. At the bottom (end) of page 14, provided free of charge on behlf of Cause Marketing, LLC. I Googled Cause Marketing and in the contact section, it listed an email address that you should see. Also in the About Us section it says: Cause Marketing, LLC can provide its corporate partners with:

•“Proud Sponsor” designation of cause organization
•Access to patient and member database

Adds more fuel to the fire? Yikes!

Jamee @ A New Kind of Normal said...

I got the email from FM Aware with that advertisement yesterday and I started thinking about your post. It seemed really fishy!

Joe Chambers said...

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.

Annie Sisk said...

Joe, your intentions and your wife's may be pure, but unfortunately coming on the heels of the radio-silence maintained by the organization formerly known as NFA, the way this has been handled has led to questions rightfully being asked. A lot of people gave a lot of money (not to mention time and emotional investment) to NFA, and when it just went dark, without so much as a word of explanation, a lot of us had cause for concern. And I'm still not sure about the purchase of mailing lists issue raised by the first commenter and updated by Selena.

People in the FM community will certainly give you the benefit of the doubt, IF you're up front and engage in full disclosure with them, I feel sure I can promise you that.

Rosemary Lee said...

Joe: What people don't seem to realize is that the organization has responsibility to the people that are their members and the people that look to the organization for education and support. By not being forthcoming about the issues or changes coming to the NFA it is perceived as deception. And rightly so.

Defamation? I think not.

If all of this was forthcoming and not shoved under the rug this post and response would not be necessary. How these changes have been done is wrong. Period.

Just be open with your members. Don't pull out words like defamation and impunity. That just makes you look worse, in my opinion. You could have written about the changes and made a promise to address all of the concerns stated. Instead you chose to become defensive. That speaks volumes.

Tom Winters said...

Since fibromyalgia was diagnosed in my family, I try to stay up to date with the latest research and medicine. I just think it's sad that we're all criticizing each other and not working together. Why is it such a bad thing if groups share information together? If my information was given to another organization trying to fight for fibromyalgia, then more power to em!

And we'll have to wait and see what this new organization is like, but I hate to be saying bad things about someone I don't know and don't really know about. It's hard enough fighting fibro fog without fighting each other.

Selena said...

@anonymous - Thank you. Addendum added.
@Jamee - Exactly.
@ Joe - Your comment has been moved to its own post above: http://www.ohmyachesandpains.info/2011/03/my-nfa-investigation-response-from-joe.html
@Annie & Rosemary - Thank you for your comments.
@Tom - Are you confirming that there is a new organization? Because I am not sure of this myself. I am willing to consider posting any statement from this new organization that answers my questions and clarifies the situation.

Also, I am concerned that the NFA email list is being sold, not shared. I have a problem with this practice. Most websites ask you of you want to share your email with "partners" and "sponsors." NFA to the best of my recollection did not ask me this.

Unknown said...

(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

Selena said...

@jan - your comment has been moved here: http://www.ohmyachesandpains.info/2011/03/my-nfa-investigation-response-from-joe.html

As you can see from the title of my post, my investigation focused on the NFA. I did not contact you for that reason. You are, however, welcome to submit a rebuttal to the opinions I expressed about your relationship with the NFA for my posting consideration. Please use the Contact Me link to send this information to me.

Anonymous said...

I really don't understand, if you are "conducting an investigation" why you did not call these people yourself (including Lynn...boy I'd like to hold that woman's feet to the fire!). Yes, call them get the story and post it. What you did was not investigation it was stiring the pot.

Selena said...

@anonymous - What you don't know is that I was contacted by Lynn Matallanna on Tuesday about doing an interview with her. We had an interview schedule for Thursday, but she cancelled one hour beforehand. I tried to reschedule but her representative never got back to me.

Lorrie Finley, Minnesota said...

The following message (at the end) I have put in parentheses is on the NFA Facebook page & will answer some of the concerns and questions you seem to be having. Because of the need to create a new site,getting to it seems complicated but follow the Facebook page for the National Fibromyalgia & Chronic Pain Association, click on Likes 'National Fibromyalgia Assocition' on the left. Then, click on 'Your FM Community Update-April 2011' which will take you to the Update Page where you can watch Lynn's video. Selena & others, you may want to keep in mind also, how many phone calls, dates, family doings, etc., you have had to cancel at the last minute and then have had a busy schedule that made it difficult to get back to person/people. As I am 1 with FM AND CP, I refuse to judge anyone else. "Your FM Community Update - April, 2011 www.fmaware.org
Over the past seven months, we realized that you had many questions and concerns about the NFA. Recently, Lynne Matallana sent a personal video message to our constituents on the state of the NFA. Watch it here" Lorrie Finley, Minnesota

Anonymous said...

Hi Selena,

My two cents worth: I think you did a good job posting. I agree with Rosemary, that their responding to your post and the readers concerns with defense, even if they did feel attacked, was not the most professional response.

Good job for informing us so clearly about your reasonable concerns.

I hope the new organization does well too. Maybe they will get back to you about cancelling so early. I think they would be lucky to have you on board to help if you have the time.

Anonymous said...

The reason I ask is because I found a scam artist in the making! I found it strange that I was unable to print anything from the issue but paid it no real attention. There was a great article on page 8 that described my issues to a "T!" This is where the plot thickens. Dr. Cory Kingston was in the article for a program called fibro innovations that offered a solution to our fibro issues. I went through two webinars with him and was ready to drive out to Utah from Michigan for three months to "fix" my straight neck. Upon sending him my insurance information he advised me that due to so many insurance issues his office required me to pre-pay for "the program" for a grand total of over $8,000.00! I almost fell for it because he offered me HOPE that he could fix my fibromyalgia and he was working directly with the NFA so I felt he was very legitament. He in fact is just a chiropractor located in Logan Utah that has a lot of marketing tools he uses to make him "appear" more then what he really is. I even called around Logan, Utah to other chiropractors and many had never even heard of him. This issue that I received via e-mail was not even endorsed by NFA (I guess they do not even exist anymore) and the contact numbers for the publication was in fact the marketing company Dr. Cory Kingston uses to get his name out to fibromyalgia patients. The number they had listed in this publication was to a person that repairs carburetors! I have done some extensive research on Dr. Cory Kingston and have not come across a single patient review as of yet! Yes, he has his name and his company linked everywhere simply by targeting fibromyalgia patients and their pocketbooks. I felt this was necessary to get this information out there so no one else is scammed into believing that he offers a cure because he in fact does not!

Anonymous said...

I also wonder about Dr. Kingston's practices. He said I would receive a discount by paying $2500 up front for treatment. Then my insurance started paying for treatment also. I quit seeing him and have asked for a statement of my account (which was "archived")on three separate occasions. Who archives accounts without settling them? Will they not provide a statement because they owe me money or because they didn't really keep records? All very suspicious.

Anonymous said...

On the fibro innovations site there are about ten testimonials. What do you think or have to say about them? I'm looking into the program and have met with him twice....before I jump right in I'm doing some research...so that is why I ask what you think about the testimonials on the page?

NotLurking on Reddit said...

Greetings from the Future,

You are completely correct. This org is full of shit and so is all of their uncited, unscientific "research" findings.

They should not have the ability to continue spreading their balony and ability to request donations.

Would the FTC be able to help us?

IF the "President" of the organizatiob really cared about fellow fibros, she'd take down this site. WE ARE IN TOO MUCH PAIN, WE ARE TOO TIRED, WE HAVE TO DEAL WITH TOO MUCH DISINFORMATION, AND TOO LITTLE REAL INFORMATION FOR THIS "STUFF"