Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Wednesday, June 20, 2007

Agent for Change

Well-come to my blog -specially titled Agent for Change and to my first posting. After a couple of years deliberating the pros and cons of starting a blog I decided that this could be a good venue for becoming a more effective "agent for change" for neuroendocrineimmune disorders such as chronic fatigue syndrome (CFS), fibromyalgia (FM), Gulf War illnesses, (GWI), Lyme disease and multiple chemical sensitivities (MCS). One concern I still have is to be able cognitively to handle the "ins and outs" of a blog, but many have assured me that I will be able to do it. I am willing to take the risk.

One person who inspired and instill the "blog bug" on me was Rebecca Artman, current Public Policy and Community Advisor for PANDORA., Previously Rebecca was our Vice-President and founding board member who had to assume this new role due to her appointment by U.S. Secretary of Health, Michael Leavitt as the sole patient advocate member of the distinguished CFS Advisory Committee, a congressional committee "established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS)." Rebecca has often suggested me to do a blog so I could share with you a bit more about PANDORA while giving me another voice outside of our organization. There lies the reason why the name of my blog is titled "Agent for Change", because it is more of my personal take on being the founder of a very special nonprofit organization. It is the opportunity to share with you some of the advocacy challenges I often encounter.

Another person who inspired me was Bill Lampton, Ph.D. from Championship Communications. I have much to learn from this amazing individual. Dr. Lampton is someone who excells in the art of communications with great success. I first met him at the 2004 "Ultimate Day of Balance", an event created by Susie Levan, the publisher of Balance Magazine. I approached him after his motivational presentation which was full of great insight, and chatted with him briefly. I was impressed with his techniques designed to encourage successful communication with any audience. I invite you to check his blog and read the posting of a customer service experience I had with a local gas-service station in my neighborhood. I often share with Bill P.A.N.D.O.R.A.'s events, ongoing hurdles and accomplishments.

So here I am. I suppose this has been a long evolving process. I am excited about this blog almost as much as I was when I founded P.A.N.D.O.R.A. I love an adventure and a good challenge! As a CFS patient advocate the very personal physical and health challenges sometimes get in the way of accomplishing personal dreams and goals. But through baby steps I hope this new journey will be a good learning experience.

In the beginning of P.A.N.D.O.RA., I remember that one of the hardest things for me was to participate in the evolution of our web site. Technology in some level has always the potential to intimidate me. I was lucky that the P.A.N.D.O.R.A.'s web site design and implementation was a generous donation by Susan Clifton, one of our founding board members and a extremely creative web designer who is now pursuing her love for painting. The transition was then much easier for me. With the blog I have to acquire some new computer learning skills and take the time to learn about blogging. It is not easy to teach an old dog new tricks specially one with CFS-ME. I am lucky that the new format for blogging on Google is now so much more user friendly. Since then I have learned a bit about the jargon that the web environment has created. It helped too do some reading (over and over) and receiving coaching on how to blog.

As we discussed technology, blogging and web sites I want to take the opportunity to invite you to visit P.A.N.D.O.R.A.'s web site . On our home page you can sign up to become a member and to receive our newsletters. Please make sure you state your city and state, so we can send you information, news and other initiatives that are more related to your area and minimize spam. While there please check the following pages: Wellness Directory, Empowerment Groups (support groups), our grass roots initiatives and our fund raising events. On our home page you will find a Google Donate Button. Since we are one of the recipients of a Google Grant, if you donate through the Google Donate button found on our home page, we will receive one hundred percent of your donation – no fees acquired. Over the years, we have had a bit of revamping on our our web site, creating new pages, tweaking the navigational process and constantly testing it to ensure we have done the best we can with our resources. We deliberated in getting a total new look and revamping our site, but the cost associated with it, prevented us from taking this route as we preferred to allocate the funding to other areas.

The needs of our community are many. The needs and the lack of quality of life associated with having CFS-ME, fibromyalgia (FM), Gulf War syndrome (GWS), multiple chemical sensitivity (MCS) and/or environmental illnesses (EI), and Lyme disease, constantly prove to be a challenge for P.A.N.D.OR.A. when communicating with our audience. It is particularly difficulty with the limited resources we have. At the end of the day, creativity and the hard-core dedication of our board of directors, volunteers, supporters and benefactors who contribute towards its success is what really drives our nonprofit charitable organization to successful accomplishments.

You can follow us now on Facebook, Twitter, follow me on Twitter and you can join P.A.N.D.O.R.A.'s group on me-cfscommunity.com. We have a wonderful VERIFIED cause on Facebook - The NeuroEndocrineImmune (NEI) Center(TM). with as of Sept 14, 2009, has 559 members. This cause has two other Facebook groups supporting it: The CFS/FM Center for Hope with 217 members, and the Depleted Uranium is a War Crime, with 42 members, we have a total of 857 members supporting our non-profit. If you add our PANDORA's Facebook page currently with 194 fans, we have a total of 1,051 fans supporting PANDORA. We need to spread the word about PANDORA's facebook page to increase the number of fans. I hope you will become a fan if you are on Facebook.

I am extremely grateful to: Lori Fidler, CFS FM Hope Center; folks handling Depleted Uranium is War Crime on Facebook; Jilly Serotta, and Beth Gilbert (administrators of our Facebooks accounts; Mary Ann Parker, Gulf War veteran promoting us on Twitter, and to everyone who donated to PANDORA on Facebook so far totaling $456. Thank you!

I look forward to your input, suggestions and feel free to share some of your most prominent concerns through this blog. Bear in mind that personal health challenges may prevent me from addressing them quickly, but eventually I will follow up with a reply. I welcome a sincere dialogue that empowers our community of suffering through respect, breaking established paradigms and encouraging initiatives that are "outside of the box " - Pandora's box. I also ask you to always use kindness and respect through this dialogue as it should always remain a strong component of our community. I look forward to sharing some of our grass roots initiatives with you and some of my personal approach when I act as an "agent for change" on behalf of P.A.N.D.O.R.A. and on your behalf.

From time to time, I will post spotlights on individuals that shape, make a difference and are focused in promoting a strong, powerful patient advocacy community and that individual could be you! I will also post personal takes on issues that are not necessarily directly related P.A.N.D.O.R.A., but will add levity, humor and a personal touch to my blog.
Let the journey begin...

UPDATED: September 14, 2009


Anonymous said...

Go for it Marly!
Enjoy the world of blogs. Post often but don't go beyond your physical limits.
Thanks from Pennsylvania

Christina said...

Marly -- I'm glad you're taking the plunge. I always find your newsletter informative -- adding a blog will make it easier for readers to share information and resources. But don't overdo!

Anonymous said...

The illness that I and many many others have is not nor never has been a 'syndrome' nor has 'fatigue' been a defining symptom.
CFIDS CFS etc are garbage can DX's which the CDC intentionally MIS- labeled and has been and continues dumping more people together in the same trash can...since the outbreaks began. We are ALL suffering because of this...and nothing is happening to benefit us. Insurance Co's can denie benefits/ correct medical diagnosis and prompt treatment have been severely hindered. And now those of us who have been ill for decades are dying off...without EVER being correctly DX'd in a timely manner.
It IS 'all in our head' ~ our BRAINS!~ our Neuro-central nervous system -immune system- endocrine systen - heart-muscles EVERY organ tissue ~our CELLS~ and not one Dr in the USA knows anything. In fact they may know LESS than many were beginning to in the 1980's. It's a travesty.

Michelle said...

Welcome to the blogosphere! The ME/CFS community is so lucky to have you and your wonderful talents. It will be great to read more of your thoughts and hear more about the great work you are doing.

Janis said...

Congratulations on starting your blog. I just set up a link to it on my own blog, www.cfsmethylation.blogspot.com Please check it out and let me know if I can do anything to help the cause. Just talking about what it is like living with ME-CFS is opening the eyes of lots of folks who have known me for years but didn't understand. We have a challenging journey before us, but much determination to overcome all the obstacles.

Unknown said...

Grateful thank you words to Anonymous from Pennsylvania, to Tina, to Michelle,and to Janis who also blogs ( I am going to create an area for bloggers who are following me to reciprocate). Your kind words meant so much to me!
A special word of thanks and encouragement goes to Anonymous who stated:...
"We are ALL suffering because of this...and nothing is happening to benefit us. Insurance Co's can denie benefits/ correct medical diagnosis and prompt treatment have been severely hindered. And now those of us who have been ill for decades are dying off...without EVER being correctly DX'd in a timely manner."... You have spelled out quite eloquently the plight individuals with neuroendocrineimmune disorders are faced daily. One most important thing we can do today is to contact our U.S. congressional leadership and ask them to support healthcare reform with a Public Option which simply translates to the closest form of Medicare for all. This is the single most important & crucial proposal within healthcare reform. Make your voice count today and mention that you are behind PANDORA, a patient advocacy organization (and more), who is making a difference. And one more thing... please participate in the single poll question on this blog, as well as on the one regarding Confidence on the CDC. Click on the link below:

Ravishing Rhia said...

Hello Marly!

Thank you for the wonderful comments and I am thrilled to see your blog! You are an incredible lady, and I am elated to be an activist and supporter of this group! My duality being a victim of CFS/FM, as well as a voice, really gives me a perspective of how I can help so many others through my support, as well as the benefit of all of your hard work! Thank you for all you do to help the millions and the numbers grow each day of these illnesses that plague us, that cause us to lost our quality of lives, the possibly harm our relationships with spouses, family and friends, that can hurt our jobs, and that honestly almost rule our lives at times. Through your kindness and caring, and through P.A.N.D.O.R.A. you have given us a voice to shape things for much more research, the possibility of more medications, more testing, and the hope of a cure from these life altering illnesses. Hats off to you my friend!

Rhia Steele

Unknown said...

Hi Rhia,
Thanks you so much for your kind words of encouragement and kindness. I am trying to develop a political force within our community of suffering. It is time for us to get this going. As a community we are way far behind compare to other communities of suffering who have realized that despite the diversity we have and it is encouraged within our community we need to robustly fight for the quality of life that individuals and their families deserve.
I am following your blog. I hope you follow mine. Advocates Extraordinaire were come.

Unknown said...

I went to your blog and saw the poll. Maybe you should have had a catagory for "none of the above" . I feel like you may get more participants. How did you arrive at this set of conditions? Do you understand what I'm getting at? With only 13 people polled it looks like over half of us has ADD. I think that's inaccuate.

Unknown said...

Hi Deborah, I think I understand what you are saying, that by adding "it does not apply or none of the above" we would have an idea that not every CFS patient has these illnesses in their families or suffer from it. This is not a scientific poll per se. The intention was to get a feel for the co-relationship or overlap that we might exist with these illnesses. I think we should in the futue do a longer survey with more specific and pertinent questions. Your suggestion is great!

Controlled Substances said...

I have fibromyalgia and went to a lecture at the Oregon Health Sciences University to learn the latest research. They had studied people with FMS when they were exercising & discovered that unlike normal people, FMS sufferers do not show increases in Human Growth Hormone levels when they exercise. This is why exercise is so difficult & exhausting for us. They discovered that large doses of HGH virtually cured this condition. But the necessary dosage would cost about $800/mo. After the lecture I found this product at my local natural foods store and, although the dosage is far less than any prescription, I thought I would give it a try. It took about 4 weeks to start noticing a difference, but then there was substantial improvement. My pain levels are not affected by this dosage, but my energy levels are up dramatically. I am now able to do yoga daily, which does decrease my pain level, and to do cardio workouts 2-3 times a week. Exercise is one of the best treatments for FMS. I have been using this product for 2 years now, including a 4-month break from it to make sure it was still making a difference. A friend of mine researched the formula in this product after discovering that HGH is not legally available w/o prescription. He found from the company that this product does not actually contain HGH itself, but contains compounds that stimulate the body's own production of HGH. Sounds like snake oil, but it does seem to be working for me.

Patients Pain Medication said...

I was diagnosed with CFS a few months ago after suffering for quite some time. I was also diagnosed with fibromyalgia. I take different medications for all of this, but nothing seems to have a long lasting effect. I take gabapentin and not sure if it is really helping me at all and was wondering if anyone has ever taken this and did it help. Right now I am on short term disability because I could not do my job effectively. I am finding that a lot of people don't seem to understand what these conditions are and look at you as you are lazy. I was also wondering if anyone has ever experienced numbness, because I have it in my left leg above the knee. As you might be able to tell that I am having a very hard time right now dealing with all this pain and tiredness and was put on anti-depressants. I just hope that this gets better in time but my doctor feels that it will not because of the length of time this has been going on. Can anyone offer any information about the drug I am taking and if has worked for them. Thank you all ahead of time for allowing me to go on.