ME/CVS/Fibromyalgie Nationale Protestactie Patiënten België VT4 Nieuwsit...

Thank you Frank for sharing this with us from Belgium. This is wonderful! "Wake Up Call" for ME/CFS  and did I understand correctly for fibromyalgia too? We join you all from the U.S. in solidarity. May Awareness month is around the corner. We will be visiting congress and will provide testimony at the CFS Advisory Committe. Together we are: 

One Voice, One (wordwide) Community, One CauseTM

 

We are getting ready for May Awareness Month for NeuroEndocrineImmune Diseases. CFA Advisory Committee Meeting is around the corner. Get Ready! Let's hear the many voices that make up our overall community. Time for a change! The Time is Now! ACT NOW! 

I CANNOT IMAGINE OUR OVERALL COMMUNITY WITHOUT SOMEONE LIKE YOU

by Marly Silverman

I haven’t been blogging lately. Because of the time, stamina and physical efforts allocated for personal medical issues, it is not a priority for me.  I do admire those who can do blog and share their voice. It is a special gift that they have indeed.

As I recently laid in bed trying to recoup from a trip the CFS Advisory Committee and to the New Jersey CFS Association Fall Conference, I wondered whether what I do really matters. Does it create change? Does it make a difference? Does it have an impact on quality of life of the chronic ill?

As I had this fleeting moment of self-pity, I reminded myself of how lucky I truly am to be part of our overall patient advocacy Community for NeuroEndocrineImmune disorders (NEIDs). I realized that it was quite illogical to think otherwise.

I simply cannot image our overall Community without someone like you, the reader, somewhere within the U.S. or living in another foreign land.  You could either be a patient with daily struggles or a caregiver wondering whether you will be strong enough to be there for your loved one, another single day.

The thing is, that whoever and wherever you are, you truly matter to me and to the organization for which I volunteer, as often as I am able and possibly can. Although I am extremely optimistic about the opportunities that are present in the current advocacy arena for individuals with NEIDs,  I am concerned that things are getting a little out of hand in the forums I have recently visited and on the types of posts I have been forwarded lately. I am concerned that the unity among the many voices remains fragile. I am afraid that the agreement in the core issues we so badly need to remain united, are being fractured. I am concerned that because of the anonymity of the Internet, individuals may feel a false entitlement to nastiness and use the Internet as a vehicle to sheer bitterness that is counterproductive and hurtful.

I don’t expect, and would not want, everyone to be identical in the manner through which we advocate for the overall Cause. We need the different points of view, the life experiences, and the personal insight and wisdom that individuals bring and come from our overall diversity; however, I certainly have concerns about the ongoing tone I see, read about, and find are being expressed in some of the patient forums.

Although I cannot even begin to explain why this is happening and cannot control individual behavior, I do see the sad results. I am sure I am not the only one. If you agree with me, then join me in speaking up but do it with respect and kindness. 

At the core of these disagreements are lack of trust coupled with a sense of rage that can be quite unproductive and destructive toward others advocate colleagues. It does not surprise me that it is often self-destructive too.   

Anger is needed and required for individuals in order to create change and make a difference; however, rage is not. Although anger directs us towards strong advocacy and making noise and pushes us to take ownership of our present and future, rage does not accomplish the same effect, reaction, and results. Anger is the first step towards empowerment. Rage, on the other hand, does not provide the balance and acuity that is needed for noble actions. In a moment of rage, as history teaches us, individuals engage in behavior that can kill, maim, destroy, and inspire others to commit horrible crimes against humanity. Over and over we see this kind of behavior in the news, in schools, at the work environment, in politics and often and unfortunately in many homes across the world.

Not a day goes by without us being exposed to rage depicted on Youtube.com for the whole word to see. It is at those times, we all wonder about civility, kindness and personal responsibility.

When rage is directed toward a fellow patient advocate in a manner that generates controversy, hurt, misunderstanding, and distrust, the reality is that we all lose the collective strength we need to fight the good battles and to win the main prize: quality of life for every patient stricken with a NeuroEndocrineImmune illness. When one of us unkindly knock down someone’s effort, and for whatever righteous reason, we all become weaker in our collective efforts. When rage happens or is manifested toward another fragile human being, we all feel the pain, simply because we are a Village, so to speak. 

Why does this continue to happen? Have we not matured as a patient advocacy community enough to learn from past mistakes? Why do we keep repeating them over and over?

I cannot imagine our Community without individuals like Tom Hennessy, Jr., and the “elders” or pioneers of our advocacy community, such as Mary Schweitzer.  Can you imagine our community now without Cort Johnson, Hillary Johnson, Christophe Cairns, and Khaily Castle? How about John Herd?

How about a Community without Drs. Kenneth Friedman, Judy Mikovits, Lenny Jason, Dan Peterson, Paul Chenney, Ben Natelson, and Nancy Klimas? How about Dr. Dharam Ablashi and Rosemay Underhill? Without the scientific and medical work that they have and continue to provide us, where would we be today?

How about Jennifer Spotila, Brian Smith, Kim McCleary, and Dr. Suzanne Vernon? Can we truly imagine our Community without them? I cannot.

I cannot imagine our overall community without Sandi Lanford, Veny W. Musum, Carol Fish, Steven Krafchick, Jason Newfield, Mary Ann Parker, Brad Ellis, Sharon Stapleton, Kathryn Stephens, and Karen Ravitz, and so many more. These individuals are cut of a different mold and are making a difference every day using their professional and personal skills. They sacrifice their personal lives to speak up for you and for me.

How about a Community without Bob Miller, Patricia Carter, Rivka, Mike Dessin, Ruth R., Sita Harrison, and Andrea Martell? How about Jill Justiss, Rik Carlson, Rich Carson, Jo Best, Barbara Stafford, Tessie Tess, and Lydia Neilson? How about our community without Daniel Moricoli, Paula Hayward, and Franky Nolan?  How about the strong voices of Kathryn Stephens, Sharon Stapleton, Betty McConnel, and Pat LaRosa? How about the kindness, concerns and creativity of Keith Baker, Frank Opp deBeck, Jerry Rice, and Peter Benko? How about the persistence of Susan Cue-Sagman and  Donna Boyer? How about the professionalism and dedication of aCeleste Cooper, Dorothy Wall, Yvonne Keeny, Sharon Ferber, Sharon Ostalecki, Sabrina Johnson, Mary Bennett, Pam Bennett, and Lynne Matallana?  I am on a roll… and I could go on for pages.

These individuals are all from different backgrounds, gender, countries, and life experiences, yet they all share the same goal—quality of life for individuals stricken with NeuroEndocrineImmune illnesses. Each one contributes in their very own special way to our overall Community.

In my Community, I cannot imagine not having the friendship and collaboration of Lynn Bousquet, Sebastian Chico, Andrea Pring, Yvette Taylor, and Tina Tidmore. In my Community, I cannot imagine not having the friendship, support, and the example of great personal courage and conviction of Annette Whittemore, Lisa Baldwin, Jill McLaughlin, Barbara Soliday, Etel Barborka, Denise Lopez-Majano and Patricia Fero, mothers of children with CFS-ME and fibromyalgia who stand up to the status quo and with their influence, tenacity, and resilience have moved mountains, each in their own special way.

In my Community I cannot imagine not having the support and caring friendship of Bonnie Meyers, Teresa Reid, Pat Mayer, Ellen B., Kathy Kohler, and all of the founding board members of P.A.N.D.O.R.A.  I simply cannot imagine where I would be without P.A.N.D.O.R.A.‘s past and current board members, community advisors, and Advocates Extraordinaire™. How about Rebecca Artman, who is my twin CFS sister; as well as George Viňa, Jenny Torres, Dr. Lina Garcia, David Adonailo, Karen Sacks, Mike Dessin Connie Borschel and Bonnie Thornber? I cannot imagine my world without them.

I cannot imagine...not having the support of all my Facebook advocate colleagues, all 717 of them, plus all the supporters of P.A.N.D.O.R.A. and of our overall efforts.  I regret not being able to list every one here. If you are interested in knowing who they are, just go to my Facebook page. 

Lastly, I cannot imagine...not having the love of my family and friends and the love and caring concern of my husband Stephen, and of my son Lawrence.

Can you really imagine our Community missing ANY one of these individuals?  I cannot. Neither should you.

If you think otherwise, you are free of course, to express yourself, but I sincerely ask you to please make your point kindly and don’t beat me up for having the courage to speak up on these touching and difficult issues. I can no longer remain silence. The time is now. Let us ACT NOW!  AND AS

One Voice, One Community, One Cause™

P.S. As we will be celebrating Thanksgiving in the U.S. soon, I think it is now more than ever fitting to be thankful and grateful for what we have, and to work together for WHAT WE NEED.

CFSAC Meeting - Washington DC, May 6,2008 - Day 2, Part I

Great items to report. The Empty Chair project went well. I was pleased to see that the room was not empty as usually and I had a less amount of chairs available for placement of caregivers/family pictures and of CFS individuals. The feedback we received from Dr.Anand was really encouraging. He is looking at all venues of communication with the patient population by using available technology that we advocacy orgs can post on our web sites and in the case of P.A.N.D.O.R.A., on our non profit page of YouTube.com.

In the meantime, we patients need to click on their web site at http://www.hhs.gov/advcomcfs/pastmeetings.html to read the Nov 28, 2007 meeting minutes to get a feel and an update for what the CFSAC is doing. I want to acknowledge here everyone who sent us an e-mail and ask for your understanding if we did not get back to you in time for this meeting. We received 100s e-mails and letters and our volunteer office staff was overwhelmed with the response. But we will keep your letters, pictures and will contact you to finalize it as we are considering making the Empty Chair project a "travelling exhibition". We will let you know if it will be possible.

The CFSAC is up for renewal this September and although the renewal of this committee is not in jeopardy as I was told by DHHS staff, the CFIDS Association does not want us to take any chances and it has issued an action alert asking CFS patients to write to Secretary Leavitt to ensure the committee remains fully funded. I actually would like to see its budget increased considerably. So make sure to say it if you write to Secretary Leavitt on the issue to raise its future funding.

Today as I was told, (and as I witnessed yesterday) was a heart wrenching public testimony period, as the CFS patients made their presentations in person. Every personal story makes your heart cringe and your eyes watery. As much as I am a veteran,seasoned patient advocate, the emotion I hear, see and feel emanating from these patients are difficult to handle. And I today did not get to witness them in person due to a morning visit to Capitol Hill to visit House Representatives Ileana Ros-Lehtinen whom I had the opportunity to meet again in person, and with Rep. Robert Wexler'staff as well with Rep. Ron Klein. These morning meetings were quite productive as our appropriations requests are in place and moving along the long tedious process. They will require a bit of tweaking regarding the language we used, and P.A.N.D.O.R.A. will work it out in the coming months, but before we tackle the next step of this project I will have to rest aggressively and recoup from this trip.

It is gratifying to see that Rep. Ros-Lehtinen understands that without a Center of Excellence and without statutory language with specific funding for the CFS/Neuroendocrineimmune Centers of Excellence, their establishment will not be realized. I say she gets it! And so do Reps Wexler and Klein (my own congressman who represents the district where I live in Florida!)

I am extremely grateful that two of their staff members: Eva Dominguez (Wexler) and Virgina Neale (Klein) came to the CFSAC meeting in the afternoon and were educated and appreciated for their interest in coming to such an important meeting for our community. I have been coming to Capitol Hill for the past 4 and half-years if not longer and this is the first time congressional staffers attended a CFSAC meeting. I am excited, grateful and elated to say the least!

A long list of recommendations are being sent to Secretary Leavitt by the CFSAC and it is incumbent on us to advise Secretary Leavitt of the importance of these recommendations to our Quality of Life. There is a huge momentum here and we need to grab it!

And to finish my report on the last day of this two-day meeting, with some exciting notes: The presentation by Dr. Kenneth Friedman, our Secretary & Chairman of Public Policy for P.A.N.D.O.R.A. provided a great insight on the New Jersey CFS Association and on their medical student scholarship, which is creating the much needed awareness of the plight of CFS patients to physicians-in-training, and affording our community a greater potential that the next wave of physicians will be well trained in neuroendocrineimmune disorders and in particular CFS. He proudly announced our own scholarships and we are elated that one of them we are naming it after him for his accomplishments, hard work and collaborative efforts in uniting our community. It has been a pleasure for me to personally collaborate and see the results of our joint efforts. It is extremely gratifying!

We are hoping that other organizations follow and apply these initiatives in their own regional areas. Our community grants are made to work as seed money/change to encourage this type of collaboration and additional initiatives.

I am also amazed at one of the most professional patient representations I have seen in the CFSAC since I have attended these meetings by Rebecca Artman,our Public Policy and Community Advisor, who valiantly, smartly and persistently is fighting for patient's issues. Her work has been diligent, to the point, and on target! I take great pride to say that she is a true representative of what P.A.N.D.O.R.A. means to our community.

I also want to invite you all to join P.A.N.D.O.R.A.'s efforts on May 12 2008-Awareness Day. During the month of MAY, series of proclamation day letters for May 12as P.A.N.D.O.R.A.'s Neuroendocrineimmune Disorders Day in the cities of Pompano Beach,Pembroke Pines, Lighthouse Point, Deerfield Beach, Delray Beach, Boca Raton, all in the state of Florida and in the city of Murphy, North Carolina are being issued by their respective mayors. If you live in any one this cities, please send your mayor a note of thanks!

I want to thank Cort Johnson, Pat & Bruce Fero, Dr. Sharon Ostalecki, Claudia Wendlandt and Rik Carlson whose organizations signed up on the letter we sent to Congressional Members of the Health Committees (appropriations) as well as their own congressmen inviting their staff to attend at least the public testimony portion of the CFSAC meeting followed by a short list of priorities that only funding will address.

I also want to thank patient advocates Mary Schweitzer, Megan and many of the brave patients, parents and caregivers who presented their testimonies during these two day-meeting. It goes further to show, that ONE VOICE, ONE CAUSE, ONE COMMUNITY, United can make a difference and I ask you who is reading this post today, to Join US and become an Agent for Change too!

ADVOCACY WORKS!

CFSAC Meeting - Washington DC, May 5, 2008 - Day 1, Part II

Today's meeting lasted until 5:20 pm. My name was included as the last individual to speak during the 45 minute public testimony period. Because many patients submitted letters to the committee and ask to present their testimony by phone, the committee expanded the public testimony period to 45 minutes instead 30 minutes as it was planned. I actually ended up being the next to the last as they tried again to reach out a patient whose phone number was not being answered.

It was a very busy day for the CFSAC. The first presentation was made by the CDC ex oficio: Dr. Bill Reeves, who provided a power point one titled CDC CFS Program Update May 2008 - Quality of Life/Education/Knowledge-Attitudes-Beliefs,followed by a presentation by Fred Fridinger, DrPH, CHES, Marketing& Communication Strategy Branch, Division of Health Communication & Marketing,CDC. This campaign will run from Nov 2006 to September 2009. Upcoming photo exhibit venues will be San Antonio, American Academy of Physician Assistants, Maryland Science Center (Baltimore,MD), Great Lakes Mall, Mentor,Ohio, Penn Square, Oklahoma Cit, OK and will culminate in Sept 22-29, at the Peyton Anderson Health Education Center, Medical Center of Central Georgia, Macon, GA.

Between now and Sept 2009 there will be expanded TV and Radio PSAs, distribution of brochure and healthcare profession toolkit and paid advertisement online media such as WebMD, Google Health,etc.

Fridinger reported that over 500 million readers/viewer impressions were recorded through March 2008 by the Media and that 24,527 of click-throughs to campaign's web site was tallied.

Here is the CDC web site www.cdc.gov/cfs

Subcommittee updates were made 30 minutes each on Education, Research, Quality of Life. The CFSAC is trying very hard to break down the barriers preventing expanded funding for research which will translate to medical treatments which will translate to quality of life for CFS patients. The government layers are monumental and once again I am reminding CFS patients to take ownership of our advocacy movement and pursue your member to be pro-active and take action on these issues.

We, as patients need to persist, insist until Center of Excellence are established i the U.S. Without them CFS research will not move forward in the pace that it must. Get on your PC, make a phone call or send a fax...Get involved and do it today and tell your congressman/woman to support our appropriations request for funding and forceful language to be included in the FY 2008 budget and in 2009 as well.

In the afternoon, during public testimony, 6 patient advocates either made their presentation in person or by phone. Pat Fero representing the Wisconsin CFS Association & yours truly P.A.N.D.O.R.A.)in person. Pat presented 76 postcards from her organization members (out of 216t) who wanted to attend the meeting but cannot therefore being part of the Empty Chair Project. She also presented data on how CFS vs GWI is being covered by our government.
I shared our efforts for May 12 including the Golf Classic on May 23, 2008 at the Country Club of Miami and the fact that Centers of Excellence are a must! Without these centers, our research scientific community cannot apply for expanded grants, access to medical training grants diminish considerably and obviously it diminishes the urgency that the U.S. Government needs to apply to eradicate CFS in the U.S. I suggested the CFSAC to investigate the process that immigration has to allow physicians and researchers from other countries to practice in the U.S. since Americans physicians are refusing to treat CFS and other neuroendocrineimmune patients. I mentioned PANDORA's physician mentoring program and what it meant for our community of suffering. We are an underserved population and now more than ever I believe that only through a statutory mandate from congress we will be counted!

I shared the letter that PANDORA and 5 other organizations such as the Wisconsin CFS Association, The Vermont CFIDS Association, H.O.P.E., The Fibromyalgia and Chronic Fatigue Syndrome Georgia Association, The New Jersey CFS Association and Phoenix Rising sent to the Members of Congress on Health Issues (Appropriations Committees both in the Senate and House)asking them to send one of their staff to attend the CFSAC meetings specially during the public testimonies.

Finally, a last thought. Twenty letters were sent to the CFSAC from patients across the country, some had pictures as part of the Empty Chair project. I will post the pictures of the Empty Chair project on our web site when I return to Florida.
For now I have to say good night and tomorrow I will report again.

Remember You and I can make a difference. Advocacy works!

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