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.  

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.

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.