IRISH MEDICAL TIMES-Doctor letter to the editor shows a remarkable level of arrogance, biases and callousness

I recently came across the link below. It is a letter to the editor to the Irish Medical Times online by a doctor stating his opinion on what I suppose would ME/CFS patient activism.
http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html


The ignorance of this (alleged) physician of the state of the knowledge of the  science for ME/CFS is blatant and high on the level of arrogance, biases, and callousness for his patients. He is yet to catch up to the science! He has no idea what ME/CFS really is. Even the scientific or medical  point of view he attempts to make is clearly exaggerated to the point that it lacks common sense. To this doctor, this disease is a figure of patient's imagination running wild because of the internet.


May he never experience the pain and suffering of what ME/CFS patients have to endure. Because if he falls ill to ME/CFS, and indeed he is at risk simply because of his line of work, well, we could then only hope that a simple act of personal redemption might cure him.


His letter goes along with the comment made last year by one of the members of the Lords Main Chamber in the UK when discussing CFS/ME suggesting it is an uncomfortable illness. There ought to be an award for these types of comments. Does anyone have any suggestions? 

Dr. Monagham, here is our message to you. We are no longer invisible. We will speak up for ME/CFS, since you cannot or refuse to do it. We will continue to require large priority funding for specific biomedical research for this NeuroEndocrineImmune disease in the U.S.  The same must be done in the UK. We will send the message loud and clear and based in the current science. We will get the right answers. Your opinion as an answer to what ME/CFS is, and as it is written in your letter, deserves and has only one place to go and where it clearly belongs- in the circular file. 

Meanwhile, in my subsequent posts I will attempt to share with you as many activities as possible being planned around the Globe to celebrate Awareness Day 2011. I am listing a few on this post.

First, I ask you to join me in DC at the CFS Advisory Committee meeting and on Capitol Hill where we will be delivering a message of hope, determination, resilience, and courage. 

Young people with ME/CFS - "Speak Up About ME", fibromyalgia, chronic Lyme disease and MCS/EI will provide testimony to the CFS Advisory Committee (CFSAC) on May 10 and May 11 in person, by video and by phone. These young individuals will be part of the Advocates Extraordinaire(TM) Advocacy Leadership program culminating with Lobby Days on May 11 for Pediatrics and May 12 for all ages and for NeuroEndocrineImmune diseases. We will be wearing t-shirts that can be purchased here. We ask you that if you are coming in person to do the same.


Time for Action (Robert Miller) is now coordinating a letter to President Obama. RESCIND is also asking patients to write a letter to President Obama and their efforts are complimentary and being coordinated too. 

Tom Hennessy, Jr, was the original creator of the International Awareness Day for NeuroEndocrineImmune diseases (on their site they use the term Chronic, Immunological and Neurological Diseases). We owe Tom our immense gratitude for his determination to to create awareness for ME/CFS. His good friend of many years Jerry Grayson has been instrumental in keeping RESCIND site running all of these years. Thank you Jerry for your dedication to the cause.

We encourage everyone to provide testimony to the CFSAC whether you live in the U.S. or not. We would like to see a long list of individuals providing testimonies along with the ones that will be there in person or are already on the schedule. Send your testimony today and it will be entered in the record. This is your opportunity to tell decision makers about our plight and influence outcome.

  

Be part of 2011 May Awareness Month by participating in the many events found in the U.S. and abroad. Take ownership of your future. Tell decision makers how they can help people with NEI Diseases. It’s up to you. It’s up to all of us.

Join me and together we are: One Voice, One Community, One Cause(TM).

Visit the site of the Coalition4MECFS.org.- A group of ME/CFS non-profit ME/CFS advocacy organization collaborating and dedicated to improving the quality of life of ME/CFS patients. These organizations will engage and mobilize governmental health agencies, the private bio-medical industry, researchers, health care providers and the public toward finding a cure for ME/CFS and related NeuroEndocrineImmune diseases. 

Here are so far the organizations which have joined the Coalition4ME/CFS.org

CFS/Fibromyalgia Organization of Georgia, Inc.
CFS Knowledge Center 

CFS Solutions of West Michigan
PANDORA Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. 

Phoenix Rising

Rocky Mountain CFS/ME & FM Association (RMCFA)

Vermont CFIDS Association Inc.

Wisconsin ME/CFS Association, Inc.

 ME/CFS Worldwide Patient Alliance winning Public Service Announcement video is awesome! This PSA created and produced by Lynn Bousquet will be sent and broadcasted on television and cable channels across the U.S. and abroad in the months to come.

Get your feet tapping at the inspirational video below. YOUR WORLD GETS VERY SMALL when you have Chronic Fatigue Syndrome (CFS) or a similar condition, like Fibromyalgia (FM), Lyme, chemical sensitivities, Myalgic Encephalomyelitis (ME) or Gulf War Syndrome (GWS).

P.S. Click here for a well thoughtful answer from Jane Colby, FRSA,Executive Director,The Young ME Sufferers Trust,Holder of The Queen’s Award for Voluntary Service, and click here to read some of the comments on Facebook including now letters from physicians addressing this (alledged) doctor's letter to the editor of the Irish Medical Times. 

BELOW ARE PICTURES OF PAST AWARENESS DAY EVENTS - Conferences, meetings, proclamation day letters and special fund raising events.  

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! 

Question from Anonymous dated February 9, 2011

A reply to Anonymous e-mail, dated February 9, 2011,

Dear Anonymous,

You sent me the following e-mail below:

“You wrote:  “...that mutual respect, courtesy and civility is once again lacking and the anonymity of the internet allows this kind of behavior go unpunished..."

I agree that civility and courtesy, etc, are good things and an ideal worth striving for. But I wonder: just how would you go about PUNISHING someone for behavior that YOU don't like?”

First of all let me qualify something important. When you state “You don’t like”, addressing it to me, I need to state that raising the issues of civility, respect and courtesy, are not based in the “like” or “don’t like” capricious category such as “I like chocolate ice-cream” and “I don’t like vanilla ice-cream”. That is not what I said, nor it should be implied. It is much more profound. I hope you understand that too.

Therefore here is my answer: I will not remain silent. I will encourage others not to remain silent. One good example is in the blog “For every naysayer complaining of an organization, point to something good these organizations have done. Do not be silent! One does not have to engage in a heated exchange, one can just say what it comes from the heart. At the end of the day the same rights one individual has in order to state a hateful position applies to a kind one too. Why are we so afraid to confront the tone of these voices?

Let me be clear, I am not advocating preventing someone from expressing what he or she feels; I am only expressing concern over the delivery of the message. The reality is that until someone walks in someone else shoes, (by the way the name of PANDORA’s official walkathon is “WalkInMyShoes™) one cannot 100% express that he or she is the absolute holder of the truth. It works both ways! It is also accepted by reasonable people that patients who diminish one organization over another are doing a disservice to the overall cause. As a patient I take umbrage on these types of approaches. As a patient I have to stand up and question one’s motives.”

The message is our community needs to be stronger and unified. We need solidarity. We do not all have to march identically and to the same beat, but the core of our (NEIDs) community standards, interests, values and objectives must be embraced collectively. When we do, meaningful change will come successfully. The time is now. 

Anonymous, I appreciate your question. Thank you.

TIME TO MAKE A DIFFERENCE TOGETHER

"For having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions, even on important subjects, which I once though right but found to be otherwise." Benjamin Franklin

Once again I am excited about what is to come in the months ahead in the NeuroEndocrineImmune Disorders (NEIDs) Community.  I think this May 12, 2011 Awareness Day will be the best ever!

I am excited with some of the initiatives that are taking shape with the NIH State of the Knowledge of the Science of ME-CFS and a potential future engagement of the CDC with patient advocates in the NEIDs community. It is exciting of the fact that through many initiatives within the NEIDs Community, life-long friendships are being created and that the theme that “now is the time to make a difference together you and I”  is coming to fruition. Stay tuned for some future announcement.

As I look at the blogs that are popping up recently, I read one blog post today that prompted me to write this blog post  If you can provide input it is appreciated. I believe the topic requires some new voices in the conversation.

More specifically I would like to address one recent statement found on the amazing blog of “CFS Central”  in ref  to Dr. Nancy Klimas. Mindy wrote: “I believe one of the reasons that patients became so pissed about the recent Klimas study was because it felt like a slap in the face:  How could Nancy Klimas, who knows full well that biomedical research is what’s needed, participate in a cognitive behavioral therapy study?  I believe Klimas’s name on that study shows that her priorities are not always patients’ priorities, no matter how proactive she’s been to the cause over the years. Patients have to stand up for themselves; they can’t depend on anyone else to help, even Nancy Klimas or its own support group, the CFIDS Association of America."

The facts are that the research in question was done almost 11-12 years ago. Unfortunately, it was only recently published in its entirety.  It is the only research on CBT that factually states that CBT does not cure CFS-ME. In fact it clearly refutes what Peter White has stated, including one of his recent statement that to "his knowledge there has not been one CBT study that demonstrates he is wrong". This one in fact does!

I speak with great insight and knowledge because I participated in one area of that study. I was among the lucky ones who were part of the 12-week study program within the research study. I was told from the beginning of the study that it would not cure ME-CFS, but it would hopefully help me cope with the day-to-day challenges I was personally experiencing. Among these challenges: the devastating abandonment by a fiancé, loss of a 6 -income figure, and loss of a successful professional career. These losses are typically the type of losses that the majority of our overall community of suffering often experiences.

I can personally say that from that study, life-long relationships were created. PANDORA was established and a new life as a patient advocate for me took shape in a most profound way. Whether anyone in our community wants to hear this or not, the fact is that this study reinforced and came at a time in my life when I needed. 

And NO… I do not t endorse CBT treatments as the kind provided in the United Kingdom, without any other type of medical care. Absolutely not! However, we cannot blankly state that in the proper setting patients with NEIDs should not use every available coping tool they can find.

With this in mind I would like to ask Mindy to please reconsider the statement made against Dr. Nancy Klimas. I also ask you to join me in this request. I can share with our entire community that without Dr. Klimas’ medical expertise, I would not be writing this blog post on these important issues.  I can also say that without Dr. Klimas thousands of patients in Florida and beyond would not have access to Social Security, workman’s comp and private disability benefits. When a judge reads Dr. Klimas’ credentials in a medical report during a disability hearing, he is aware of her spotless credentials. Without the work of Dr. Klimas countless patients would lose hope ending in one of the most painful events, when I am told that another patient within our overall community has died by suicide.

I sincerely agree with Mindy in many areas.  I personally would like to see a complete wipe out of the mind-set of our health government agencies of ME-CFS and other NEIDs as well. I would like to see $150 million dollars being invested annually on ME-CFS. The same for the other illnesses  PANDORA embraces.

 I recently stated to some advocate colleagues from other organizations: “The main drive of the letter to the CDC (which Jill Justiss mentioned on Mindy’s blog post) is to change a NATIONAL policy towards ME-CFS. Only through a change in national policy from the bottom up, meaning we get patients and their state leaders, then federal congressional leaders, then cabinet members and then the bureaucrats to do what they are supposed to do, we will yield huge positive results. So here is our take: No more handouts. No more half-efforts. We need to be smarter. We need to collect connect the dots. The time is now for an all out effort by ALL to take ownership of our future and the future of millions of ME-CFS patients by collaborating…” BTW, click here for the CDC petition. 

I stand by this quote. I know it will not be easy, but we have to start building trust, interaction and networking among the patient community and our government officials, and the sooner the better.  Wouldn’t you think that 3 and half decades of getting “crumbs” as Mindy stated would not have induced a much smarter approach from our “independent patient advocates” also to create change? Instead what I have seen year after year, after spending 12 years watching the internal fracturing, bickering, anger, bitter disrespect, rage, and demonization of one another or of organizations across the board simply because one might not agree with another individual. It is pitiful! It has to stop! It has to begin right here. It is a waste of stamina, energy and creates emotional turmoil. The time one spends on forums creating disharmony and chaos could be better used to create change that is meaningful and powerful.  

It does not help us either with the fact that the stigma that this community of suffering already endures becomes larger than life, because of such misdirected and destructive behavior.

Yes, Let’s Be Angry! Be very Angry, because angry directed to a greater good creates change. I am all for it! Yet, I do not subscribe to the uncontrolled rage I am witnessing that is quite destructive.

I do not subscribe to the theory that “organizations have failed us”. But I do subscribe to the concept we can do better! I do not subscribe that our patient community should attempt to destroy the core and the foundation of several organizations, which have established through hard work, perseverance and resilience, programs that are beneficial to the overall community. Yet, I do subscribe to the concept that we should ask questions and provide constructive criticism.

I also subscribe to the fact that organizations without patient participation, do not thrive. They slowly become obsolete and ineffective. Again, only through sincere and ongoing participation and collaboration we can all win the fight.

Our community organizations’ tasks are monumental. It is a gargantuan struggle finding resources, getting volunteers, raising funds, answering phones, writing newsletters, communicating with officials, visiting disabled patients, bringing food to patients,  writing letter on patient’s behalf to Medicaid and insurance companies, and much more. I cannot help but question if any of the individuals in question have really taken the time to visit with a representative of any of the organizations supporting our overall community and to get to know them personally.

I embrace the fact that as organizations we need to get with the times, and we have to be smarter by using social media advocacy and other tools to our advantage.  Some of the suggestions as it relates to ACT UP (AIDS) as I have been reading on some of the blogs or forum posts, I dare to say have been replaced, re-evaluated and/or complemented by other much more contemporary approaches.

As someone who is participating not only as an individual and as a representative of an organization – PANDORA, which wears many hats as a local, state, national and international organization, yet with a very small budget, I can state that while within the confines of our mission we have accomplished successful projects. The same can be said for all of the organizations I have interacted supporting our overall community of suffering.

A good example to share of a good and yet “in your face” approach is the “flashmob” display in which I participated at the latest CFSAC meeting. It was a powerful display, yet it was respectful. For patients across the U.S. who saw the video and for patients across the globe it was an awesome event to experience. So why are not patients asking organizations "What can we do to help you to drive our message more effectively?"  

Instead, what I am seeing is heartbreaking and exasperating. It is also painful to realize that despite 3 decades later, the CDC is still lending credit to the psychobabble approach. It was this personal realization, which came as a personal anger and also shared by many in our patient community, was directed to the positive, leading to the cause-project ME-CFS Worldwide Patient Alliance on Facebook. I am proud to say that PANDORA supports this cause.

How about the grassroots artistic efforts of Sock it 2 ME-CFS? Why are not more patients supporting it in great numbers? Recently the creators of such patient initiative posted that they can no longer continue to do the project and could use assistance.  This project is the one that gave every CFSAC member a well-crafted colorful sock pin and created such a buzz during the meeting in DC and at the New Jersey CFS Association Fall Meeting last year.

Why aren't more patients supporting "FAX the AD"? A collaboration among several patient groups on Facebook and organizations? 

It is also heartbreaking to see within our patient advocacy community, that mutual respect, courtesy and civility is once again lacking and the anonymity of the internet allows this kind of behavior go unpunished and seldom refuted.  The tone found in many of the forums across our community are once again obnoxious, hurtful, demeaning, and counter-productive. When are we going to realize that this internal bullying approach is wrong?  It is said to say that I can tell you is that this approach has been in place for decades too and the results are the same: A community divided leading to a weakened community as well.  What is wrong with this picture?

Like many in our patient advocacy organizations, our board has been proactively advocating, lobbying and assisting financially families and individual patients on a personal level and through PANDORA.  Often we do not share these successful results due to confidentiality and privacy issues. How can any one of us truly measure some of the efforts organizations do on patient’s behalf? One way is by sharing your experience and knowledge of any organization you support. Express your appreciation not just for one organization but for many TODAY! 

For every naysayer complaining of an organization, point to something good these organizations have done. Do not be silent! One does not have to engage in a heated exchange, one can just say what it comes from the heart. At the end of the day the same rights one individual has in order to state a hateful position applies to a kind one too. Why are we so afraid to confront the tone of these voices?

Let me be clear, I am not advocating preventing someone from expressing what he or she feesl feels, I am only expressing concern over the delivery of the message.The reality is that until someone walks in someone else shoes, (by the way the name of PANDORA’s official walkathon is “WalkInMyShoes™) one cannot 100% express that he or she is the absolute holder of the truth. It works both ways! It is also accepted by reasonable people that patients who diminish one organization over another are doing a disservice to the overall cause. As a patient I take umbrage on these types of approaches. As a patient I have to stand up and question one’s motives.

There is no other diplomatic way to state what I am posting here. I know that I am going to probably get hate mail. I will have to deal with it. I also know that for each hateful e-mail, I will get 10 stating otherwise. I just hope I will not get death threats as some of the perceived enemies of our community including a controversial researcher has received when inflammatory writings by a few hit the forums and the internet.

As one very wise woman Tammy Saltzman (a S. Florida life coach) recently quoted another very wise woman- Margaret Chase Smith, “Every human being is entitled to courtesy and consideration. Constructive criticism is not only to be expected but sought.” Therefore I welcome your input but I will also exercise my personal right to not post replies, which will damage the fabric and the strength of our overall community.  

I appreciate your taking the time to read this blog post. Thank you for all that you do. 

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.

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

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!

'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'

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.