Well-Come!

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).

Monday, December 6, 2010

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

Here is the Press Release covering a historical moment in our overall advocacy community. I am proud to be part of this movement. A huge thanks to the MCWPA team and to the PANDORA team who in collaboration with hundreds of other patients advocates worldwide have raised the bar in advocacy strategy and commitment.

My special gratitude goes to Tina Tidmore, Sita Harrison, Kathryn Stephens, Sharon Stapleton, Andrea Pring, Karen Ravitz, Lynn Bousquet.

To the organizations who supported the advertisement in The Washington Post: P.A.N.D.O.R.A. Inc., Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

To the creative bunch of CFS-ME patients who designed incredible ads projecting our unique voice, I am grateful.

To the Time for Action team : Charlotte von Salis, Bob Miller and Rivka, I am grateful.

To the angel donors who donated generously, I am grateful.

To patients who contributed generously to the cause, I am grateful.

To everyone who believed in the cause-project, WE are grateful.

Click in the link below and give yourself a pat in the back, because WE are no longer invisible. The best is yet to come.

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

One Voice, One Community, One Cause(tm)

P.S.: Please visit MCWPA.org today. Donate to the cause-project as generously as you can.

Thursday, November 11, 2010

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 Vi┼ła, 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



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.

http://myemail.constantcontact.com/News-from-P-A-N-D-O-R-A-----November-2010.html?soid=1098473133029&aid=ie-b3qaLh-E

P.A.N.D.O.R.A.'s Latest newsletter (November) 2010. Share it with your friends. Sign off on the petition. Get involved.
Marly

http://myemail.constantcontact.com/News-from-P-A-N-D-O-R-A-----November-2010.html?soid=1098473133029&aid=ie-b3qaLh-E

Monday, July 12, 2010

CHASE COMMUNITY GIVING-1 Day Left to VOTE for P.A.N.D.O.R.A. to Remain in the top 200 charity list

REMINDER: PANDORA IS THE ONLY ORGANIZATION EMBRACING CFS-ME, FIBROMYALGIA, MCS-EI, LYME DISEASE, GWS ONTHE TOP 200-CHASE COMMUNITY GIVING

Dear Friends, 
Patient Alliance for Neuroendocrineimmune... Disorders Organization for Research & Advocacy, Inc. (this is how you have to search for us if you need.) DBA as P.A.N.D.O.R.A., the charity I founded,  is holding a very good ranking on Chase Community Giving. We are the only organization from within our overall Neuroendocrineimmune Disorders (NEIDs) Community that has made to the top 200 ranking now at number 140  with 1,1303 votes. You can vote for us at http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

We have accomplished this amazing task with the support of individuals like Frank OpDeBeeck,who created a tutorial video to get us on the top 200 and many more, including Phil Campos, who produced the video for the contest, Andrea Martell, Rik Carlson, Sus Cue-Sagman, Michelle Lonchar, Gaston Gingues, Andrea Pring, Pat LaRosa, Cort Johnson, Blair Miller, Betty McConnel, Sandi Lanford, Ashely VanTol, Martina M Punktchen, Claire Randall, Nancy K Jay, Thomas Hennessey, Keith Baker, Lisa Baldwin, and so many more. You know who you are and we are grateful to you all!

We are also grateful to our board members on Facebook who are asking their friends to vote  and to the National Fibromyalgia Association, The CFIDS Association and the Whittemore Peterson Institute for posting on their Facebook pages asking their fans to vote for P.A.N.D.O.R.A. too.

BUT if we do not get a significant spike on the number of daily votes for our organization between now and July 12, the day the contest ends, we will lose the opportunity to receive a grant in the amount of $20,000.00. While for some of the larger organizations this may be a drop in the bucket, for us it is 95% of an entire year's budget. It is priceless!

Look at what we can do with $20,000.00:
1) Pay our phones, web site hosting, newsletters costs for 2010. Get a new computer that can handle new technology specifically for non-profits including a new efficient donor data base.
2) Continuing to position our organization and our strategical partners, so we can move on with our main project: The establishment of the NEI Center(TM), in New Jersey. It will take time and money to get this off the ground. http://www.neicenter.com/calltoaction.htm
3) Get a new technologically updated web site that will continue to inform you and share what we do best.
4) Hire a part-time person to help us in the office to respond to an ever growing number of inquiries & assistance for individuals stricken with NEIDS.
5) Travel to DC to represent you at the CFSAC meetings, Pain Medical Conferences and at the IACFS-ME conference in Ottawa next year.
6) Collaborate with other organizations through our micro-grants for medical students, educational conferences and advocacy/lobbying efforts in the U.S. and abroad.
7) Expand the Quality of Life Advocate Program: Patient Advocates helping others and "paying forward".
8) Expand the Advocate Extraordinaire Program for PANDORA - http://www.neicenter.com/advocatesextraordinaire.htmand the NEI Center(TM) - http://www.neicenter.com/advocatesextraordinaire.htm
9) Cost of educational brochures (art work, printing and mailing)
10) Support of empowerment groups in Florida and beyond.
11) Provide support to parents with children stricken with NEIDs.
12) Create PSAs for the illnesses we embrace and expand PANDORATV on youtube.com - http://www.youtube.com/user/pandoranet and http://www.youtube.com/user/lymenaide
13) Strengthen our national and international advocacy and grass-roots initiatives.

These efforts combined with a Chase Community Giving grant will strengthen an organization that is patient-driven and physician approved.

Please vote today for Patient Alliance for Neuroendocrineimmune...(DBA) P.A.N.D.O.R.A. http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

if you haven't voted yet, we will run the risk of losing our current rankings and end up with NOTHING. You would not want this to happen... would you?

Often I hear that no one cares about our community. That the lack of respect, lack of money for research & patient treatment, and lack of awareness for the plight of millions is the norm. Well, here with Chase Community Giving we have the PERFECT OPPORTUNITY to get all of the 3 major concerns we all have in one swoop. As a matter of fact with the number of individuals stricken with CFS-ME and fibromyalgia, our organization could have been on the top 5, competing for the $250,000.00 and $100,000.00 grants.

Make sure you Vote for PANDORA NOW - today and for the other organizations that too share a similar mission with us. We cannot afford to miss this wonderful opportunity. If we are able to get another 5 or more orgs on the top 200, we are speaking of a cash injection in our advocacy movement of at least $120,000.00. To see the list of the organizations suggested by advocates go to http://www.facebook.com/notes/pandora-inc-patient-alliance-for-neuroendocrineimmune-disorders-organization-for/cast-your-vote-for-patient-allliancepandora-and-forthe-organizations-that-embrac/134208223265717

Here is the link again: http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

Thank you for your support! We can win this grant! All we need is your vote.


In Good Health and In Beauty,
Marly Silverman, Founder, P.A.N.D.O.R.A. - www.pandoranet.info
Co-founder: The NEI Center(tm) - www.neicenter.com










Wednesday, June 16, 2010

Chase Community Giving on Facebook

Friends

Here is the link to vote for P.A.N.D.O.R.A. on Chase Community Giving contest. We are now number 53 on the top 200 list of charities and we are moving up too quickly. WPI is now number 17 on the top 200.
Please support this effort. We really have a great chance to get some funding for PANDORA to be able to continue to get our main effort: The NEI Center and other worthwhile efforts off the ground.

Chase Community Giving on Facebook


Here also is the link that will take you to a page that Frank Op De Beeck from Phoenix Rising has created specially for this contest and in order to support the work of P.A.N.D.O.R.A. and WPI.
Cast your vote today:
http://www.chasegiving.tk/

Here is the link to vote for P.A.N.D.O.R.A. if you already voted for WPI.
http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

Here is the link to vote for WPI if you already voted for P.A.N.D.O.R.A.
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-forneuro-immune-diseases

Here is another organization that you can vote too using the 5 votes you have for this round:
http://apps.facebook.com/chasecommunitygiving/charities/223930161-the-lanford-foundationlifelyme-inc

I have contacted The Vermont CFIDS Association, the Wisconsin CFS-ME Association and the New Jersey CFS Association asking them to ensure they are registered too so we can vote for them too and when we do we can get a Gift Vote that we can then give to a friend to vote again either on WPI or PANDORA or any other of the organizations within these 5 or any of the organizations of your liking.

Cast your vote today!

Support WPI and P.A.N.D.O.R.A. by voting, (up your volume) Lets win $250...

Tuesday, May 4, 2010

'News from P.A.N.D.O.R.A. - May 2010'

Dear Friends,

I am on vacation with hubby but I want to share with you the latest PANDORA's newsletter. May is PANDORA's Awareness Month for Neuroendocrineimmune disorders. We have several events in South Florida that we are sponsoring and/or supporting, starting with May 8, 2010 lecture by Dr. Nancy Klimas, then May 11 meeting at the Center for Independent Living (CILB) then the event on May 12, in Boca Raton for Fibromyalgia and related chronic illnesses and finally the events on May 12 by the Fibromyalgia Support Group of Boynton Beach. We have also gathered proclamation day letters from the cities of Murphy, North Carolina, Columbus, Ohio and Pompano Beach, Florida declaring May 12, P.A.N.D.O.R.A.'s International Awareness Day for Neuroendocrineimmune Disorders. Click on the link below for complete information on these events and much more.

'News from P.A.N.D.O.R.A. - May 2010'

Happy Mother's Day!

We hope you will participate in these events if you live in South Florida and if not please join one in your neighborhood. There will be so many events worldwide celebrating and empowering members of our overall community.
Take ownership of your future by donating today towards the NEI Center(tm) in New Jersey.

Marly Silverman

Saturday, April 17, 2010

'News from P.A.N.D.O.R.A. - April 2010'


MITCH PAGEREY RACING FOR A CURE FOR NEUROENDOCRINEIMMUNE DISORDERS SUPPORTING P.A.N.D.O.R.A.'S EFFORTS - LONG BEACH, CALIFORNIA - April 16-17, 2010



Hi Everyone, I want to share with you P.A.N.D.O.R.A.'s latest newsletter. This weekend
April 17-17, 2010, Mitch Pagerey is racing for a cure for Neuroendocrineimmune Disorders. Vroom, Vroom, Go Mitch! Check out the NEI Center logo on his suit and the PANDORA's patch on his sleeve. Then look at the beautiful new logo of PANDORA painted on his car. Vroom,Vroom, Vroom. Life is good!

'News from P.A.N.D.O.R.A. - April 2010'


Saturday, April 3, 2010

Motorsport.com: Photos channel

I am sharing this with you even before our press release goes out. I could not wait! This is so cool! Here are some of the pictures of Mitch Pagerey and his team at the 12 hours Sebring, Florida. Please note the NEI CENTER patch on his suit and and the PANDORA logo on car 89. Mitch is racing for a cure for Neuroendocrineimmune Disorders. Check out these pictures. We are so grateful to Mitch for his support of P.A.N.D.O.R.A. Vroom, Vroom, Vroom.


Motorsport.com: Photos channel

Monday, March 15, 2010

'NEWS: NEI Center Resolution Awaits Passage in New Jersey Senate'

Fellow Bloggers,

I am so proud to share that we are on our way to PHASE 2 of the NEI Center patient driven community project. Here is the latest on this grass roots efforts. Spread the word!


'NEWS: NEI Center Resolution Awaits Passage in New Jersey Senate'

Monday, March 8, 2010

Wednesday, March 3, 2010

'Ryan Baldwin case is an ominous wake-up call'

Due to a longer unexpected relapse (is there any other kind when you have CFS?) I haven't been blogging much. P.A.N.D.O.R.A.'s facebook page and dealing with some other family health issues have taken care of my time and stamina. Although advocacy is a hobby for me, sometimes one has to walk way to recharge one's batteries. The statement you are about to read is truly important not only to parents with children with CFS-ME, but to parents with the neuroendocrineimmune disorders (NEIDs) P.A.N.D.O.R.A. also embraces:
Fibromyalgia, Multiple Chemical Sensitivity, Chronic or Persistent Lyme Disease.

The Pediatrics & Family Conference is to be held in the Asheville area. Asheville as you will read by clicking on the link below is a gorgeous mountainous area - the Blue Ridge Mountains - and famous for their celebrity homes and art. But Asheville is also the the back drop for what I qualify as "an institutional ingrained uneducated medical view (by physicians in North Carolina) and in other metropolitan areas of the country in regards to CFS-ME and other related chronic illnesses.

Our goal with this conference, is to highlight the continuing inadequacies (despite) years of the CDC medical provider education complemented by the public educational campaign with the CFIDS Association. Despite the hardwork from the CAA, we, patients with CFS-ME are still dealing with the fact that there are still only a dozen of CFS specialists in a few states treating CFS-ME patients, who are reaching retirement age, and the fact that the number of primary physicians in the 50 states only have a mediocre understanding of CFS potential treatments.

For the past two years when making my personal presentation to the CFS Advisory Committee board I brought the fact that if there are no American physicians willing to learn, to educate themselves about the potential treatments for CFS-ME (as well as the other NEIDs) that P.A.N.D.O.R.A. embraces. And, since this has not changed and it does not seem that it will change despite of all the advocacy that organizations have created, then we must import foreign physicians from other countries to do the work that their American counterparts are not doing or willing to do.(We will have to do that anyway, when health care reform comes to place and I hope soon.) At P.A.N.D.O.R.A. we have taken this to heart. We assisted Dr. Lina Garcia in getting her working visa to the U.S. Dr. Garcia is now going through the medical board licensing rigorous process so she can start a residency program and then open her practice for CFS-ME, FM and GWS private practice if she does not go into scientific research for neuroendocrineimmune disorders. For about 3 years now she has been under the supervision of Dr. Nancy Klimas at the University of Miami, CFS clinic in downtown Miami. By the time she will be done with this training she will be able to apply it to her residence training rotation and teach other physicians in the process too.

For now I ask you to read P.A.N.D.O.R.A.'s statement and get involved in any way you can in acting as an advocate. One opportunity will be to join our Advocate Extraordinaire program. E-mail me thorugh our contact page on our site, and I will add your name to the growing list of Advocate Extraordinaire who are getting ready to make a difference.

'Ryan Baldwin case is an ominous wake-up call'

Monday, January 18, 2010

Word of Thanks!

In the past year, P.A.N.D.O.R.A.'s Facebook page and our Twibe on Tweeter have been doing well because we have wonderful administrators helping us to stay in touch with members of our community.

I want to acknowledge a few from the U.S. today: Susan Cue-Sugman, Jill Serotta (who is taking a break for now) and Mary Ann Parker. These amazing ladies have spent hours posting relevant materials and responding to question that often pop up on our social sites.

I am grateful for their commitment and support of P.A.N.D.O.R.A. They are indeed Advocates Extraordinaire!

P.S.: Please note that in order to see the links for Sus and Jill you must log in to Facebook or sign up for it.

Monday, January 11, 2010

Make a Difference Monday Video by Mrchicity3

This was sent to me by a subscriber and friend of PANDORANET, our youtube.com page. The person along with her family who did the video and cooked the delicious soup are from South Florida. The Broward County homeless agency listed here is coincidentally one of the agencies many of our members have supported in the past with gifts of food for their pantry. Random Acts of Kindness and amazing acts of beauty. Thought this could lift you up.
Marly Silverman
Founder, P.A.N.D.O.R.A.
www.pandoranet.info

'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'

Here is PANDORA's latest newsletter. Share it with your friends on your Facebook page. If you are a blogger post the link in your blog too.

'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'

1Voice, 1Community, 1 Cause(TM)

Marly Silverman

Wednesday, January 6, 2010

2010 - The Beginning of the Quality of Life Decade for NEI Patients

Friends, 

The writings below now revised for you,is one that I sent today after learning of the passing of a fellow brother within our community. The e-mail was sent to the the leaders of the many organizations that embrace CFS or other neuroendocrineimmune disorders or illnesses, some politicians, and to some members of the Department of Health and Human Services.

Back in 2003 and later on 2004 on a conversation with several individuals I used the term "failure to thrive" which shocked some. I stated that our overall community (including physicians and researchers too) were in an environment that was not conducive to growth in the angles that are necessary for our community to thrive. For patients is the quality of life issue that are overbearing. For physicians is the lack of knowledge and science that can guide them to treat their NEI patients. For researchers is the lack of will from the government and other potential interested parties that results in dismay funding for CFS and other NEIDS. It is a chain reaction that creates such human pain and despair of great proportion.  

It was not until the sad news of the death of a fellow brother in illness, that I became aware of a blog titled "Failure to Thrive". Powerful words aren't they? 

http://toadlily-gamer.blogspot.com/2010/01/weve-lost-jack.html

I am deeply concerned that Jack's writings (of blessed memory) shared with us.. that he was not a "young one". He had lived a great life and yet because of his current circumstances, his spirit became broken and worse yet, his body lost the connection with his soul resulting in the loss of the will to live.  

Therefore I dare to ask the question: isn't  then CFS a mind,body, soul illness like any other severe and debilitating chronic illness that robs people of their quality of life and dignity?  Isn't CFS an illness that robs individuals of their humanity? As members of our community of suffering we need to be open for this discussion and to pursue a healthy debate that although CFS is not a psychiatric or mental health illness, it can certainly place individuals in this fragile realm, resulting in a forsaken reality that propels individuals to commit suicide. 

How many more losses will this community of suffering have to bear before we unite as 1 Voice, 1 Community, 1 Cause ? 

With some heavy heart, at least I see glimpses of potential hope. The WPI efforts with great potential being realized now. The NIH trying to replicate the XMRV virus using the same protocol, ME-CFS community.com, efforts underway in Europe to get an advocacy movement that is strong; the IACFS-ME conference in Canada, the CAA making research a priority, the NJ CFS Association, the Wisconsin CFS Association, the Vermont CFIDS Association ongoing medical student efforts, Phoenix Rising, Pro-Health, Facebook groups who are creating such an awareness to our cause that is awesome! And obviously our own efforts for the establishment of the NEI Center in New Jersey and in other satellite locations. 

But the bottom line, and there is always one, is found in 3 simple words: QUALITY OF LIFE - This decade starting in 2010, it should be the year for all of our organizationsto concentrate on this theme. From this day forward for the next 10 years, it should be the QUALITY OF LIFE DECADE FOR THE NEI COMMUNITY. It should be the decade to bring, enhance and create QUALITY OF LIFE for the individuals we all claim to represent. We must make this our main priority and you too the patient needs to be part of this monumental effort in whatever way you can.  

I wish you all a Happy Healthy and Prosperous New Year! 

Marly Silverman
In mourning for Jack DeLuca

P.S.:

Debbie Anderson sent me the address to where you can send your sympathy cards to:
Dennis Sabatino
1510 Sullivan Trail # B
Easton, PA 18040