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! 

PANDORA'S LATEST NEWSLETTER

PANDORA's latest newsletter is packed with great information and tips on how to beat the flu season, advocacy videos, CFSAC testimonies from a "courageous Doc" - Ken Friedman, and the latest update on Leia Jobe, one of the finalists of PANDORA's 2006-2007 International Advocacy Video Contest. You will love her new video!

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

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]

=======================================================================
-----------------------------------------------------------------------

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

DHHS SEEKING NOMINATIONS FOR 5 POSITIONS WITHIN THE CFS ADVISORY COMMITTEE

Well, folks is here the much awaited request for nominations for 5 positions to the CFSAC was announced today in the Federal Register

Deadline is September 20, 2009. New term will begin on January 3, 2010.

P.A.N.D.O.R.A. has a few names that we would like to nominate, but if you know of a researcher or a physician in you area that we could also nominate and the individual is committed to accepting the nomination and serve in this distinguished committee, we will nominate the individual or individuals.

You can e-mail me at msilverman@pandoranet.info.

Some pertinent information below:
DATES: Nominations for membership on the Committee must be received no
later than 5 p.m. EDT on September 20, 2009, at the address listed
below.

ADDRESSES: All nominations should be mailed or delivered to Wanda K.
Jones, DrPH, Executive Secretary, Chronic Fatigue Syndrome Advisory
Committee; Office on Women's Health; Department of Health and Human
Services; 200 Independence Avenue, SW.; Room 712E; Washington, DC,
20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Department of
Health and Human Services; 200 Independence Avenue, SW; 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 chronic fatigue syndrome advances.

Nominations

The Office on Women's Health is requesting nominations to fill five
positions for the CFSAC. The positions are scheduled to become vacant
on January 3, 2010. The Committee is composed of seven scientists with
demonstrated expertise in biomedical research and four individuals with
demonstrated expertise in health services, insurance, or voluntary
organizations concerned with the problems of individuals with CFS. The
vacant positions include all four categories. To qualify for
consideration of appointment to the Committee, an individual must
possess demonstrated experience and expertise in the designated fields
or disciplines, as well as expert knowledge of the broad issues and
topics pertinent to chronic fatigue syndrome....

For the complete public notice in the Federal Register click here.

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!