chronic fatigue syndrome, fibromyalgia, fms, cfs, myalgic encephalomyelitis, me, lyme disease, chronic lyme disease, cld, environmental illnesses, multiple chemical sensitivies, mcs, gulf war syndrome, gws, gulf war illnesses, empowerment groups, support groups,cfids
chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids
chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids
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chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids




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CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE (CFSAC)

Notice: Solicitation of Nomination for Appointment to the CFSAC - August 3, 2010 (HTML, PDF)

Meeting of the Chronic Fatigue Syndrome Advisory

Committee (CFSAC) - Federal Register Notice: meeting announcement, Vol. 65, No. 62 - Thursday, April 1, 2010 / Notices 16485 (HTML, PDF)

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

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: May 10, 2010

TIME: 9 a.m. - 5 p.m.

ADDRESS: 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.; Deputy Assistant Secretary for Health (Women's Health); Department of Health and Human Services; 200 Independence Avenue, SW.; Hubert Humphrey Building Room 712E; Washington, DC 20201; (202) 690-7650.

Click here to view agenda for meeting

CFSAC Recommendations to the Secretary of Health and Human Services

 

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Meeting of the Chronic Fatigue Syndrome Advisory

Committee (CFSAC)

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

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: October 29th-30th, 2009

TIME: 9 a.m. - 5 p.m. both days

ADDRESS: 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.; Deputy Assistant Secretary for Health (Women's Health); Department of Health and Human Services; 200 Independence Avenue, SW.; Hubert Humphrey Building Room 712E; Washington, DC 20201; (202) 690-7650.

Click here to view agenda for meeting

Click here to view what the CDC says about CFS

Click here for announcements posted on their web site.

Click here for Federal Register Announcement.

Click here for the CFSAC web site

This is a meeting that patients, family members and advocacy organizations in our community should attend. We all need to be part of the solution!

Click here for the comphehensive report on GWI by the Research Advisory Committee on Gulf War Illnesses

Click here for The Research Advisory Committee On Gulf War Illnesses upcoming Committee meeting in Washington, DC, in Room 230 of VA Headquarters, 810 Vermont, NW.  Click here for the meeting's preliminary agenda.

Committee meetings are open to the public and include time reserved for public comments.  A sign-up sheet for five-minute comments will be available at the meeting.  Members of the public who speak are invited to submit a 1-2 page summary of their comments at the time of the meeting for inclusion in the official meeting record. Individuals do not need to pre-register to attend or speak at the meeting.  However, because meetings are normally held at VA headquarters or facilities, all attendees will be required to check in and show valid ID at the security desk.

The Committee welcomes suggestions and information from veterans, physicians, scientists, and members of the general public regarding its mission.

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P.A.N.D.O.R.A. is here to help. P.A.N.D.O.R.A. was built on Hope. We are strong on Advocacy and we support scientific Research, so ultimately a Cure can be found for CFS/ME, FM, GWI, MCS/EI, PLD, and other related and debilitating neuroendocrineimmune disorders.

Join us on Youtube.com

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Join P.A.N.D.O.R.A. on Facebook

Join P.A.N.D.O.R.A.'s cause

on Facebook

Join Marly Silverman's Blog

Agent for Change

OUR YEAR AROUND GREEN PROJECT

Our ongoing "Green Project" - Don't Dump it! Donate it to P.A.N.D.O.R.A! and Save the Environment. Since the beginning of 2008, when this green environmental project was implemented, it has generated over $1,200 and we are using these proceeds to offset our ongoing communications internet expenses.

We want to acknowledge the many corporations and local businesses who are helping us with this project.  We are grateful to Coastal Construction.  They have set up several collection boxes through their offices for cell phones, ink toners and ink cartridges. The proceeds of the sales of these recycled items to Dade Recycling Inc. are being donated to P.A.N.D.O.R.A.

If you know of a corporation or business that could be part of this environmental friendly project, please contact P.A.N.D.O.R.A. and we will make sure they join the corporations above and many more who have signed up for the "Green Project".

Every year - May 12th

International Awareness Day for

Neuroendocrineimmune Disorders

Click here to view our Awareness Month Events and our 2009 Awareness Day Poster

 

ACKNOWLEDGEMENTS

P.A.N.D.O.R.A. is a

recipient of a Google Grant

Award.

The Google Grants program supports organizations sharing Google's philosophy of community service to help the world in areas such as science and technology, education, global public health, the environment, youth advocacy, and the arts.

Designed for 501(c)(3) non-profit organizations, Google Grants is a unique in-kind advertising program harnessing the power of Google AdWords advertising product. Google Grants has awarded AdWords advertising to hundreds of non-profit groups whose missions range from animal welfare to literacy, from supporting homeless children to promoting HIV education.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids

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P.A.N.D.O.R.A. nominated the following individualsto be onthe CFSACbeginning in thespring of2010: 

Dr. Paul Chenney, North CarolinaCaroline Fibrance, Esquire, Wisconsin

John Herd, California

Eileen Holderman, New Jersey 

Dr. Herbert Hyman, Florida

Cort Johnson, Arizona

Steve Krafchich, Esquire, Washington State

Jill McLaughlin, Massachussetts

Dr. Martin Pall, Oregon

Dr. Dan  Peterson

Dr. Richard Podell,  New Jersey 

Dr. Albert Robbins, Florida 

Barbara Soliday, Florida 

Dr.Jacob Teitelbaum, Hawaii

Annette Whittemore, Nevada

Join us on Youtube.com

Join us on Twitter

Join P.A.N.D.O.R.A. on Facebook

Join P.A.N.D.O.R.A.'s cause

on Facebook

Join Marly Silverman's Blog

Agent for Change

 

CFSAC meeting on May 27-

28, 2009 was one of the

best PANDORA has ever

attended.

Click here to read the written testimony provided by PANDORA. Marly Silverman, founder of PANDORA was given the opportunity during the time assigned for public testimonies to speak. She used Facebook and report on some of the action during the first day. She also posted on ME-CFScommunity.com

Click here to view the archived video broadcasts for both days. We were told that from now on all future meeting of the CFSAC will be broadcasted in order to comply with the ADA government mandates. A victory indeed for everyone involved in getting this off the ground - Rebecca Artman, MAME (Mothers Against Myalgic Encephalomyelitis), Dr. Kenneth Friedman, PANDORA's The Empty Chair Project in partnership with advocates from almost all 50 states including national, state and local sister  organizations including local groups who sent pictures, who wrote letters that we delivered to our congressmen, made phone calls and a special acknowledgement goes to MAME (Mother Against Myalgic Encephalomyelitis) a group of concerned grass roots advocates led by Jean Harris. Her team filed with the Office of Civil Rights to ensure accessibility of these meetings to the disabled would be accommodated. Kudo to her dedicated team! Our patient advocacy community through unity has its VOICE back where it needs to be.

ONE VOICE, ONE COMMUNITY, ONE CAUSE!

 

 

FINANCIAL  ASSISTANCE

Financial assistance is now available with medical co-pays from the Patient Advocate Foundation, Co-Pay Relief Program. If you have difficulty paying your medical co-payments and you suffer from chronic pain, you may be able to qualify for this financial assistance program. To file an application please click here. Every month they accept new applications.

 

PAGES YOU WANT TO VISIT

ADVOCACY

Advocates Extraordinaire Program/NEI Research Centers Project

Empowerment Groups and sub-menus

What's New

Empowerment & Support Group Meetings

Wellness Directory

Research

Advocates Extraordinaire Program/NEI Research Centers Project

 

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