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 firstname.lastname@example.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 email@example.com 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 firstname.lastname@example.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.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.
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!
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.