As Tina has posted, there are many great ideas out there by the patients that need to be read, commented on, then voted on. You have until Sunday! Please jump in and help us keep pushing.
We did have some impact from the Washington Post Advert and the worldwide Press Release. Our Press Release with a really great photo was on the Times Square (NYC) billboard running on/off for three days! So, people in NYC were able to read about ME/CFS and the Retrovirus.
We also have had impact on the US Feds.
I also think that the UK people are running scared as sin since they put out those FOUR bogus "studies" in one day on that fake Retro online "journal". Four in one day? Running scared because they too were most aware of the AD and PR and the fact this has emboldened the people of the UK to be mad as hell and to demand big changes. Wessely knows the time is coming to an end that he can run the show in the UK, so... let's PUSH really hard to get rid of Weasel and get the folks of the UK real medical care and not psych wards.
Hit the site Tina has posted above. Also, go to our website http://www.mcwpa.org -- Great stuff out there.
Hit Tina's website address and read. Be creative and get us a great public service announcement! Win money for you and your charity.
Please: All super creative types THIS IS YOUR TIME to come up with a really strong, powerful hard-hitting Public Service Announcement that gets the REAL information out. Hit Tina's site and give it a go.
What do YOU think the public MUST KNOW about us??? Can you get the powerful and critical info out there in a short period and really hit the sweet spot???
Where is the person who did my ultra favorite video on the ME/CFS timeline??? Where are you?? Won't YOU give it a quick shot please????
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:
factors affecting access and care for persons with CFS;
the science and definition of CFS; and
broader public health, clinical, research and educational issues related to CFS.
Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women's Health, which is part of OASH.
Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.
May 10-11, 2011 CFSAC Meeting
For further information, contact:
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of the Assistant Secretary for Health
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX) firstname.lastname@example.org (Email)
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 Tuesday and Wednesday, May 10 and
11, 2011. The meeting will be held from 9 a.m. until 5 p.m. on May 10,
2011, and 9 a.m. until 4:30 p.m. on May 11, 2011.
ADDRESSES: Department of Health and Human Services; Room 800, Hubert H.
Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.
For a map and directions to the Hubert H. Humphrey building, please
FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, DrPH; 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. Please direct all
inquiries to email@example.com.
SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee shall advise and make recommendations to the Secretary,
through the Assistant Secretary for Health, on a broad range of topics
including (1) the current state of knowledge and research and the
relevant gaps in knowledge and research about the epidemiology,
etiologies, biomarkers and risk factors relating to CFS, and
identifying potential opportunities in these areas; (2) impact and
implications of current and proposed diagnosis and treatment methods
for CFS; (3) development and implementation of programs to inform the
public, health care professionals, and the biomedical academic and
research communities about CFS advances; and (4) partnering to improve
the quality of life of CFS patients.
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. The meeting will be broadcast over the Internet as a real-
time streaming video. It also will be recorded and archived for on
demand viewing through the CFSAC Web site.
Public attendance at the meeting is limited to space available.
Individuals must provide a government-issued photo ID for entry into
the building where the meeting is scheduled to be held. Those attending
the meeting will need to sign-in prior to entering the meeting room.
Individuals who plan to attend and need special assistance, such as
sign language interpretation or other reasonable accommodations, should
notify the designated contact person at firstname.lastname@example.org in advance.
Members of the public will have the opportunity to provide oral
testimony at the May 10-11, 2011, meeting if pre-registered.
Individuals who wish to address the Committee during the public comment
session must pre-register by Monday, April 18, 2011, via e-mail to email@example.com. Time slots for public comment will be available on a
first-come, first-served basis and will be limited to five minutes per
speaker; no exceptions will be made. Individuals registering for public
comment should submit a copy of their oral testimony in advance to firstname.lastname@example.org, prior to the close of business on Monday, April 18,
If you do not submit your written testimony by the close of
business Monday, April 18, 2011, you may bring a copy to the meeting
and present it to a CFSAC Support Team staff member. Your testimony
will be included in a notebook available for viewing by the public on a
table at the back of the meeting room.
Members of the public not providing public comment at the meeting
who wish to have printed material distributed to CFSAC members for
review should submit, at a minimum, one copy of the material to the
Executive Secretary, at email@example.com, prior to close of business on
Monday, April 18, 2011. Submissions are limited to five typewritten
pages. If you wish to remain anonymous, please notify the CFSAC support
team upon submission of your materials to firstname.lastname@example.org.
All testimony and printed material submitted for the meeting are
part of the official meeting record and will be uploaded to the CFSAC
Web site and made available for public inspection. Testimony and
materials submitted should not include any sensitive personal
information, such as a person's social security number; date of birth;
driver's license number, State identification number or foreign country
equivalent; passport number; financial account number; or credit or
debit card number. Sensitive health information, such as medical
records or other individually identifiable health information, or any
non-public corporate or trade association information, such as trade
secrets or other proprietary information also should be excluded from
any materials submitted.
If you know of any young ME/CFS patients, please let them know about this important event.
In keeping with the Speak Up About ME theme, we are also offering two tee shirts options and buttons for the adult CFSAC attendees and other May 12th Awareness Day supporters. The two-sided shirt costs more, but speaks of the retrovirus on the back.
Please note that there are many tee shirt options available (mens, womans, fitted, loose, short sleeve, long sleeve, etc.). I do not recommend the Value Tee for quality reasons. I am ordering a long sleeve tee so that it can be draped over the back of my chair in view of the camera…hehe.
If you order your tee by 3/31, Zazzle has a discount code for $5 off: STPATSDEAL11
Or for 10% your entire order, use discount code (good through 6/30): 10ZAZZLE2011
Let’s fill the room!!! Invisible No More! Silent No More!
--->> MCWPA Moving Forward, Actions Completed, Money Raised, Money Needed, and Progress Report. PLEASE Read so everyone knows what MCWPA has done and is going to do. So much done in so little time and yet more to do especially in the next couple of VERY critical months. Read and get involved in any way possible!
2,173 Members as of 25 March 2011 - MCWPA began in August 2010.
Posted by Tina Marie Miller Tidmore at 12:12pm 24 March 2011
The MCWPA team is moving forward with the actions you said you wanted to accomplish in the first half of 2011. Next action:In the January survey, sending letters to other patient organizations that are now linked to XMRV was high in the survey response. So we are ready to start on that. The first and obvious one is prostate cancer. We would like to ask for any patient who would like to help in writing this letter, please contact us at email@example.com.
Doctors Need to Know (report- we were informed of people all over the world who mailed letters to their doctor. Over 1,000 viewed the instructions on the MCWPA Patient Discussion board.)
Money raised for actions: We have the money for the press release to be distributed internationally through a wire service of the next big biological finding. It has been "pre-written," waiting for the published study. We have the money for the Public Service Announcement to be distributed to cable networks in May.
We have at least four planned submissions for the Public Service Announcement contest. We hope to have examples posted for patient feedback next week. Please read all bulletins so you don't miss the opportunity.