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! 

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.

Community, Collaboration, Unity can drive worthwhile solutions for CFS-ME Patients & Other Neuroendocrineimmune Illnesses

I am posting a reply that I provided earlier to one of my blogs at me-cfscommunity.com (PANDORA's Follow up Letter to the U.S. Secretary of Health - Need your number one request/input NOW). Because of technical difficulties (and or operator error) my corrections did not come through in the page layout. In order not to lose what I wrote I had to redo it and in the process I realized that my response should be in a blog format, which I also did on my blog OneAgentforChange, but due to health challenges could not publish promptly,

Now, once again I am bed-bound with a CFS-ME relapse coupled with a head cold that is making me miserable, because I know I could be spending time with my son Lawrence today going over my mother Zuzu,(of blessed memory) belongings and shooting the breeze and probably arguing about national and international politics. It has become a "family tradition" but one that can be annoying at times, partially because as a mother, I will have the urge to pull rank.

But I am digressing, and I need to go back to the reasons why you are reading this blog post now and they have plenty to do with the title above.

The conversation or reply ensued out of PANDORA’s request for ONE single request/suggestion that patients could provide to PANDORA for a follow-up letter to the U.S. Secretary of Health regarding the plight of our community of suffering. Here is then the revised response from me:

“Khaly's comment/suggested request is one that ALL of the organizations advocating for CFS-ME have requested in one form or the other for quite sometime. The overall vote of confidence in the U.S. Government ability to do the "right thing" sunk to its lowest ever. In my last testimony to the CFSAC Oct 29-30-2009 testimony.pdf, I suggested the incorporation of the 3R's - Reconciliation, Restore and Resolve in the future approach of government health agencies on CFS-ME specially after the XMRV virus findings. The patient community is an instrumental part of this process too. We need to keep the pressure on the U.S. Government to work toward solutions.

Roy's comment hits the jackpot. But PANDORA wants more. We want the Department of Health and Human Services, not just the NIH, to ensure that LARGE grants are disbursed. We want an embracement from the top of our government the acknowledgment that they are paying attention. No more hand-outs that are piece meal and are not targeting the huge task CFS-ME (and other NEI illnesses represent). It is the key that is missing in the whole picture.

We know for a fact that there is a huge disconnect in Academia halls in the U.S. (large and small medical colleges) that completely disregard NEI illnesses. We have witnessed that year after year. The professional disregard for NEI Researchers in their own college campuses. The disregard for our national community's plight in the cities and states where these academic institutions are located. In Dr. Ken Friedman's video, his long- successful career as a medical professor is being jeopardized because his superiors are not keen on the issues. Unfortunately, this pattern of disregard and consideration towards fellow college professors and researchers who are teaching and or researching on NEI illnesses have been a huge stumble on the science side. It reflects harshly in the patient community. It is the reason why patient's quality of life suffers and we languish. Many of us are survivors, but we are not thriving and leading well deserved productive lives.

I say no more! We need to collectively communicate to academia that they too are responsible for the scientific push for NEI illnesses. No more hiding behind the fact that research grants are not coming down the pipeline because of health government officials. The officials who are serving now in our government have led careers and or were trained in the same academic halls that we have found no solace or embracement. If the prestigious universities with medical and research centers do not entice, teach, educate and make it part of their curriculum NEI illnesses as a must have, do you think that the NIH, CDC or others will out of the goodness of their structure take the initiative?

As far as our community, I think it is healthy to have respectful disagreements among patient of all background and personal experience. It is the diversity of our backgrounds that fuel the debate and the conversations. But we need to be UNITED as an ENTIRE community. I mean every single organization large or small, perfect or imperfect, so our UNITED VOICES can be heard by concentrating on the issues that WE ALL AGREE!

As the founder of PANDORA I have some personal experience on the difficulty of managing a non- profit advocating for the HUGE NEEDS of our community. It is a HUGE task followed by the lack of HUGE FINANCIAL RESOURCES that lead us to MISSING OPPORTUNITIES, which would have provided better results had we the capability to seek, participate or simply identify these opportunities. The reality is that NO SINGLE ORGANIZATION can do it all. We the individuals representing patient's organizations need to be humbled of this simple fact, and yet we need to maintain a motivation factor- i.e. a certain amount of pride for the work that we do. If we don't share it with you, with potential benefactors and with our health agencies our successes, we are not doing part of the job and part of our mission.

This is a HUGE country with geographical, regional culture, diversity and political ideologies that all combined make it even more difficulty to tackle the hurdles we have in our community of suffering. Simply put, and as I see it, PANDORA's weaknesses as an organization is complemented by other organizations strengths. I can share several good example with you: The New Jersey CFS Association sponsored the first and only CFS-ME Physician's Consensus Manual (a project of Dr. Kenneth Friedman and Dr. Oleske and many others). PANDORA realized the importance of the manual and we provided a grant to another organization in Spain- the Fundacion... and the collaboration of Dr. Ferran J. Garcia Fructuoso brilliantly translated by Cathy Van Riel, a colleague patient advocate from Spain.

The grant we gave for a medical student scholarship to the Vermont CFIDS Association is a milestone for the work the association has been done over the years.

We also provided a scholarship to a student diagnosed with any of the NEI illnesses that we embrace at DePaul University – Chronic Illness Initiative

In 2009, we provided a grant to Dr. Gordon Broderick's work in Canada, which will complement the grant he has received from the CFIDS Association (CAA).

Another good example of the other way around: The CAA about two years ago provided us with a grant so we could have a booth at a large women’s business conference in Tampa. It was a huge success! On the day of the conference I met with the mayor of Tampa and I met with the President of the University of South Florida – Dr. Judy Genshaft leading to a constructive conversation about NEI illnesses. Our booth was one of the busiest ones in the conference hall!

Other great examples: PANDORA and the Wisconsin CFS Association have been providing support to a family in Buncombe County, North Carolina dealing with the issue of Factitious Disorder by Proxy leading to 23 other organizations and hard core advocates signing off on the letter we sent to the Governor of North Carolina. PANDORA's strategical partnership with ME-CFScommunity.com: we are all benefiting from this endeavor. Our collaboration with the IACFS-ME for the presentation of one of their outstanding (raising the bar considerably) conferences in 2007 leading to an even better one in Reno, Nevada in 2008. In 2008 we provided a grant to the IACFS-ME Association honoring Dr. Nancy Klimas which in turn was used to honor two upcoming Junior Researchers on CFS one being Dr. John Chia.

Dr. Nancy Klimas this year donated a one hour consultation for our organization to auction off on E-Bay. The auction provided us with a wonderful donation to our bank account. She also donated her time for a lecture on XMRV virus that we sponsored in partnership with me-cfscommunity.com and the local empowerment support groups.

Across the country, I often hear of treating physicians and researchers collaborating with the local organizations catering to our community. Dr. Kenneth Friedman is one individual who has actually broken the record in community involvement. All you have to do is Google his name and pages of information reflects his involvement in the IACFS-ME, PANDORA, Vermont CFIDS Association, Wisconsin CFS-ME Association, CFSAC and much more.

More recently, the strategical partnership with the Lanford Foundation-Lifelyme™, for the special project- The NEI Center(tm), in New Jersey, which is leading to other important collaborative initiatives in New Jersey and beyond.

For the past two years, If my mind does not fail me, PANDORA has advertised in the conference's booklets sponsored by the New Jersey CFS Association. In turn this year, they provided us a donation grant for our work on Advocacy.

PANDORA in addition has provided donations to the ME Association in the UK as well as to the National Fibromyalgia Association and the CAA for their Advocacy work. Strategic collaboration with the American Pain Foundation created a huge training base for advocates across the country for several organizations fighting on your behalf on pain issues.

So what is the underlining message that I want to share with you? Is that as patients, as researchers and physicians, as organizations, and as government officials, we need to stop the finger-pointing and substitute it for constructive criticism. We need to give until it hurts to the several causes that are pushing for major changes in the areas that are meaningful to you individually, as well as for the overall community. We need to do so, WITHOUT diminishing the work of others. As the representative of an non-profit organization, I need to continue to think outside of the box, and if we know of an organization that can do the task that PANDORA does not have, or the skills or personnel to do it, we will collaborate with them with great pride wishing for their continuing success.

We need to continue to debate, but without name calling and lack of respect. Yes, be angry, be vocal, but let's channel the anger to constructive and positive initiatives. Calling for the take-down of one organization or another is not constructive, questioning the organization for its performance it is. Calling for the replacement of an individual is quite reasonable, but only when we provide strong facts supporting the request. "Demonizing" organizations or individuals are extremely counterproductive to the overall community. Criticizing for lack of performance based on the facts is a valid approach that will lead to great changes, but personal attacks towards the humanity of others, is in my book and a position that is shared by many others in our community, as not the best way to ensure common sense, harmony, and the long-term and profitable negotiations, which will result in benefits for the overall community.

Today is the first day of Hanukkah, a day that Jews all over the world celebrate as the triumph of light over the darkness. Jews are taught that we should not curse the dark, we should simply light the candle. As a Jewish woman and applying the same thought to our plight as NEI patients, we will bring the light to our communities through collaboration, sharing, creating bonds and remaining loyal to what unites us all.

Happy Hanukkah! May this entire December holiday season bring you peace, health, tranquility, wealth and may it provide the unity and the cure for what ails us, and for what our community needs it. May we be blessed with these sweet gifts for a lifetime.


HAPPY HOLIDAYS!

1 Voice, 1 Community, 1 Cause™

P.S. : This is not a prepared statement i.e, it is without any editing by PANDORA's editor. Please excuse any grammar or typos. This is simply a soulful message from me, an individual with CFS-ME (and related illnesses), who understands the health challenges individuals with NEI illnesses experience. But ONE, who also is engaged in the process of finding solutions that will bring quality of life for a forgotten patient community.

Chronic Fatigue Syndrome: Are we really just bitter?

A couple of weeks ago a member of the me-cfscommunity.com, shared with me an article that was posted on ABC News online, that lumped chronic fatigue syndrome (CFS) with 7 other illneses that they deemed "weird" and/or controversial. Here is a solid response from Beth Gilbert a member of our board of directors. Beth contacted the doctor who was quoted on the article and if you want to know what transpired, you need to read Beth Gilbert's article. Read on and share it!

Chronic Fatigue Syndrome: Are we really just bitter?

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IT IS TIME FOR CHANGE - Part IV

As part of the IT IS TIME FOR CHANGE grass roots initiative it is important to share with you the following CDC response that was posted (modified on Sept 1, 2009) on the CFS CDC program web site:

Input on CDC CFS Strategic Research Plan
"Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.

Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).

CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas."

To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.


Pro-Health Library also posted on September 8, 2009 a short article stating that"CDC to Present 5-Year Research Plan Oct 29-30 at CFS Advisory Committee Meeting", In the article they also referred to Dr. Leonard Jason's position on the empirical CDC CFS definition.

I have not seen an announcement from the CDC regarding what their next move will be. I suppose it takes time to compile the response of the stakeholder's meeting. I am sympathetic to that. Individuals familiar with our advocacy community have been told that positive changes will be made at the CDC, but no lay out of a more specific plan regarding the leadership and or the management team of the CFS CDC program has been announced.

It is known and customary that at every CFSAC meetings there is always a report presentation from the CDC ex-officio member. I suggest that what our community needs to do is to pack the room at the DHHS on October 28-29. Patient advocacy organizations need to send at least one representative to attend the Oct 28-29 meeting. Patient, family members and physicians treating CFS patients and other neuroendocrineimmune disorders (NEIDs) need to send in their testimonies by emailing them to cfsac@hhs.gov.

This is a most auspicious opportunity and we cannot let that go unnoticed. I am hoping that the Empty Chair Project will not have to be displayed once again at the next CFSAC meeting to highlight once again how empty that room is without patient advocates.

IT IS TIME FOR CHANGE... to be continued

IT IS TIME TO CHANGE - Part II -October 29-30 Next CFSAC Meeting in Washington DC- Department of Health and Human Services (DHSS)

Federal Register date announcement for the next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. We need to ensure once again attendance to this important meeting will continue to increase.

It is Time for Change.
We need to fill each chair in the meeting's room with individuals from all every regions of our country to speak loud and clear that progressive changes have to be made within DHHS and its institutes, agencies that will advance the science in neuroendocrineimmune disorders and more specifically on CFS-ME.

Can PANDORA count on you to be there? We are creating a communication list to make sure we coordinate a national effort to fill the room and show our support for the CFSAC and their recommendations. We will be asking for a meeting with the Secretary of Health either on Oct 28-29, 2009 to share our UNITED message. IT IS TIME FOR CHANGE!

[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Notices]
[Page 45857]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr04se09-63]

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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.

ACTION: Notice.

-----------------------------------------------------------------------

SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.

SUPPLEMENTARY INFORMATION:
CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.

Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to cfsac@hhs.gov to register. Public comments will be limited to five minutes per speaker.

Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.

Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]

BILLING CODE 4150-42-P

Be a Guest Blogger! : Invisible Illness Awareness Week

NICIAW is Sept 14-20, 2009 and you can find out more info at www.invisibleillnessweek.com . They are having a 5-day virtual conference with 20 speakers giving seminars. -Be a Guest Blogger! : Invisible Illness Awareness Week

They are looking for guest bloggers. "Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where."

This is a great opportunity to show off your own blog and be part of something special. Tell Lisa that Marly Silverman, from PANDORA is grateful for the great work that they do.

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!

CFSAC Meeting - Washington DC, May 5, 2008

I am here in Washington DC on my way to attend the May5-6, 2008 CFS Advisory Committee meeting at the DHHS. I am excited as I heard that several patient advocates are flying in from different parts of the country to submit their testimonies. This indicates to me that I may not have as many empty chairs for our advocacy project which is exactly the results that we like to see.

I have letters from CFS patients from several states and their pictures as well to place in the empty chairs. I am meeting with some congressional staffers tomorrow. Dr. Kenneth Friedman, our Secretary and Chairman of our Public Policy committee will make a presentation at this meeting regarding initiative or methods to get medical students to learn about CFS-ME. We are excited about his presentation because the methods he spearheaded at the NJCFS Association is something that other organizations can follow. P.A.N.D.O.R.A. has expanded their original initiative and we have established community grants which will be disbursed in the coming months. The first community grant from P.A.N.D.O.R.A. was given to DePaul University for the Chronic Ill Student Patient program. The second one was an advocacy grant given to the CFIDS Association of America, Inc. Complete details on these grants and about our entire community grant initiative will be going out soon. Please check our web site on May 12, 2008 - Our International Awareness Day - One special gift that Tom Hennessy Jr. gave us when he worked valiantly for the rights of CFS and Neuroendocrineimmune Disorders Patients worldwide.

I will provide you with some pertinent information as the meeting progresses and when I am able to log on the net.

As May 12 approaches, the cities of Murhpy-North Carolina, as well as the cities in Florida of Delray Beach, Pembroke Pines,Lighthouse Point and Boca Raton have issued letter proclaming May 12, 2008 - PANDORA's Neuroendocrineimmune Disorders Awareness Day in their cities. More to come soon...
Life is Good!

Marla Silverman