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CFSAC meeting notification: May 10-11, 2011 CFSAC Meeting

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Also at this URL:

http://www.hhs.gov/advcomcfs/


From Tate Mitchell, via Co-Cure:

http://edocket.access.gpo.gov/2011/2011-6702.htm
http://edocket.access.gpo.gov/2011/pdf/2011-6702.pdf

May 10-11, 2011 CFSAC Meeting


[Federal Register: March 22, 2011 (Volume 76, Number 55)]
[Notices]
[Page 15982]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr22mr11-88]

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

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 the Assistant Secretary for Health.

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 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 visit http://www.hhs.gov/about/hhhmap.html.

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 cfsac@hhs.gov.

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
cfsac@hhs.gov 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 cfsac@hhs.gov. 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 cfsac@hhs.gov, prior to the close of business
on Monday, April 18, 2011.

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 cfsac@hhs.gov, 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 cfsac@hhs.gov.

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.

Dated: March 18, 2011.
Wanda K. Jones,
Executive Secretary, Chronic Fatigue Syndrome Advisory Committee.
[FR Doc. 2011-6702 Filed 3-21-11; 8:45 am]
BILLING CODE 4150-42-P

---------------------------------------------
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CBS

Senior Member
Messages
1,522
Suzy,

Thanks for the post. Do you know if there will be accommodations for videotaped comments by patients? Written testimony alone does not adequately convey what many of us are going through. That said, unless something changes, I'm not physically able to attend and testify, let alone sit through he rest of the conference.

Thanks,

Shane
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Suzy,

Thanks for the post. Do you know if there will be accommodations for videotaped comments by patients? Written testimony alone does not adequately convey what many of us are going through. That said, unless something changes, I'm not physically able to attend and testify, let alone sit through he rest of the conference.

Thanks,

Shane

Hi Shane,

I'm afraid I don't know whether video testimonies would be accepted or have been accepted in the past.

I would have thought that if an individual was unable to submit a written testimony or attend in person to give testimony, or to give a 5 minute testimony via phone link, that a five minute video on a DVD ought to be acceptable.

Can you leave this with me and I will ask someone who has attended these meetings whether this form of submission has been acceptable, in the past.

If they are unable to answer your query then I guess the CFSAC Secretary would advise you, if approached.

I'll get back to you on this.

Suzy
 

Hope123

Senior Member
Messages
1,266
Suzy,

Thanks for the post. Do you know if there will be accommodations for videotaped comments by patients? Written testimony alone does not adequately convey what many of us are going through. That said, unless something changes, I'm not physically able to attend and testify, let alone sit through he rest of the conference.

Thanks,

Shane

Laurel (don't know her name on the forum) sent in a short video ?last year and her sister read her testimony for her. You can ask Dr. Wanda Jones if they will allow it this time. You can phone-in testimony -- I believe they set aside a time for you and you don't need to sit through the meeting in-person or even online to do it. Last alternative is finding someone to read your testimony for you at CFSAC, which shouldn't be overly difficult.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
@ Shane

I have passed your enquiry to someone who has attended these meetings as an advocate and to give testimony who has made enquiries of Dr Wanda Jones, the CFSAC Secretary.

Apparently, Dr Jones has advised my contact that you can submit testimony in the form of disc but you would need to write to: cfsac@hhs.gov immediately in order to get your name down for a slot to testify - she says - even if it is video, there has to be a spot reserved for it.

Hope this answers your query.

Suzy
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
@ Shane

I have passed your enquiry to someone who has attended these meetings as an advocate and to give testimony who has made enquiries of Dr Wanda Jones, the CFSAC Secretary.

Apparently, Dr Jones has advised my contact that you can submit testimony in the form of disc but you would need to write to: cfsac@hhs.gov immediately in order to get your name down for a slot to testify - she says - even if it is video, there has to be a spot reserved for it.

Hope this answers your query.

Suzy

That's so great to know. Thanks, Suzy.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Reminder: Written testimony due in a couple of days- Monday, April 18th.

I submitted this (similar to one I submitted previously; feel free to use in whole or part without attribution):
Justin Reilly, esq.
956 13th St.
Boulder, CO 80302
April 16, 2011


'Chronic Fatigue Syndrome' Advisory Committee
US DHHS
cfsac@hhs.gov


RE: Testimony for May 2011 CFSAC Meeting:
Fiddling While Rome Burns is Not an Effective Public Health Strategy


Ladies and Gentlemen of the Committee:

The core strategy of CDC and NIH for responding to the ME (Myalgic Encephalomyelitis) ("CFS") pandemic can be charitably described as Fiddling While Rome Burns. It is sad that it needs to be brought to the attention of HHS that this has proven, over the past twenty-five years, to be an ineffective strategy. Time to try something new: a response proportionate to the incredible toll ME exacts on our nation. Below are the most important and urgent demands for you to make to the HHS Secretary; in declining order:

I. ICD-10 CM

ICD-10 CM listings for ME ("CFS") must reflect the reality of the disease. It is urgent that demand be made to the Secretary since ICD-10 CM may be set in stone as early as October. If it is not changed, it will hurt the one million Americans with ME for many years.

The existing draft has two listings for the disease. WHO does not allow two listings for the same disease, so one must be eliminated or the two must be merged under one listing.

One of the listings is for "Chronic Fatigue Syndrome, NOS" as the only condition under "Unspecified Fatigue." This is a travesty. Need it be said once more that ME ("CFS") is not synonymous with the symptom of "unspecified fatigue." And why is "Not Otherwise Specified" added to "CFS" considering that "CFS" is not mentioned anywhere else in ICD-10 CM? Obviously, this is yet another attempt by CDC to loose ME ("CFS") in a sea of "chronic fatigue."

ME is the only condition listed under "Post-Viral Fatigue" While "Post-Viral Fatigue" should be listed under ME, it is inappropriate to do the converse.

ME should be kept where it is in neurological diseases, but "Post-Viral Fatigue" should be listed under ME, not vice-versa as is currently suggested. Additionally, "CFS" should be either eliminated or also listed under ME.


II. Reeves Criteria and Canadian Criteria

The patently inaccurate Reeves Criteria for ME ("CFS") must be discarded and the Canadian Consensus Criteria must be adopted by CDC. Prof. Jason has published proof that the vast majority of people who meet the Reeves Criteria do NOT have ME ("CFS"). The Reeves Criteria have already wasted millions of tax-payer dollars and muddied the science of ME. An accurate ME Definition- such as CCC- must be adopted.


III. New Chief of the CDC Chronic Viral Diseases Branch

Demand must be made to the HHS Secretary to appoint an outside expert to the post of CDC Chronic Viral Diseases Branch Chief. Branch Chief Dr. Elizabeth Unger has made no significant change to the disastrous CDC "CFS" program. To my memory she has testified at her first CFSAC meeting that she did not intend to change the program or do away with the Reeves definition. In view of CDC's long sordid history regarding ME, an outside expert must be appointed or the "CFS" program must be shut down.

I suggest an expert such as Annette Whittemore, Hillary Johnson, Drs. Nancy Klimas, Leonard Jason, Paul Cheney, Daniel Peterson, Charles Lapp, Lucinda Bateman, David Bell, Judy Mikovits, or Anthony Komoroff.


IV. Disease Funding

Funding for the disease remains at a scandalously low level. Erectile dysfunction receives more than three times the NIH funding of ME. "Native American and Alaskan Health" receives more NIH money per person than ME, despite the fact that, obviously, the vast majority of Native Americans and Eskimos do not have extremely disabling diseases. NIH and CDC funding should be increased between 100 and 1,000 times (not percent) to be on par with funding for similarly disabling diseases. This means a raise from the current NIH funding of $3M per year to the appropriate $300M to $3B per year.


V. Name of the Disease and Committee

The committee should recommend that HHS change the name of the disease back to ME. And it should change its name to MEAC (Myalgic Encephalomyelitis Advisory Committee) and refer to the disease by its rightful name, that assigned it by WHO ICD since 1968: ME. "CFS" is a misleading and derogatory name which causes significant medical and social harm to patients. "CFS" is totally unacceptable and must be dropped immediately.


VI. Congressional Inquiry

A congressional inquiry into the malfeasance and nonfeasance attending the decades long "Fiddling While Rome Burns" ME policy at CDC and NIH with the objective of
(A) restoring misappropriated funds,
(B) apportioning additional "back pay" funding of at least $300M for each year
from 1984 to present, and
(C) bringing criminal charges against those responsible for this "state terrorism", in the words of Byron Hyde, MD,
inter alia CDC's William Reeves and Brian Mahy.

Thank you for your service to our nation and your consideration.

Sincerely,

/S/

Justin Reilly, esq.
 

muffin

Senior Member
Messages
940
The Chronic Fatigue Syndrome Advisory Committee Events and Items!

Posted by Karen Mascuch Ravitz on 16 April

The Chronic Fatigue Syndrome Advisory Committee will meet on May 10th and 11:
"http://frwebgate1.access.gpo.gov/cgi-bin/TEXTgate.cgi?WAISdocID=sxS1ji%2F1%2F1%2F0&WAISaction=retrieve"

The last day to submit your written testimony or request an in-person testimony is MONDAY, the 18th. You do not need to be a US citizen to participate!

Speak Up About ME inspired tees and buttons are selling; please dont be left out!

Here are the links, below:

For Adult CFSAC Participants or anyone who wishes to support the cause:

One sided Tee shirt:
"http://www.zazzle.com/cfsac_one_sided_tee_for_adults_tshirt-235803612034563670"

Two sided Tee shirt with retrovirus message on the back:
"http://www.zazzle.com/cfsac_two_sided_tee_shirt-235172448071068907"

NEW!!! Button inspired by Pat Feros NIH Testimony:
Im worth more than $3.64!
"http://www.zazzle.com/mcwpa_button_i_am_worth_more_than_3_64-145186034413278844"

$150 Million for ME/CFS Research Now button:
"http://www.zazzle.com/mcwpa_funding_button-145448348114878163"

Please note that there are many tee shirt options available (mens, womans, fitted, loose, short sleeve, long sleeve, etc). For 10% your entire order, use discount code (good through 6/30): 10ZAZZLE2011

PANDORAs Lobby Day Event Page:
"http://events.r20.constantcontact.com/register/event?oeidk=a07e3kxr54jb281f146&llr=f4utbb44"

Speak Up About ME Young Peoples effort initiated by Denise Lopez-Majano and other advocates.
"http://www.speakupaboutme.org/speak-up"

Thank You!
The MCWPA Team :balloons:
 

Nielk

Senior Member
Messages
6,970
Reminder: Written testimony due in a couple of days- Monday, April 18th.

I submitted this (similar to one I submitted previously; feel free to use in whole or part without attribution):

Justin,

Very well put.
Do you plan to attend?
 

Nielk

Senior Member
Messages
6,970
Does anyone plan to attend?
I really would like to go but right now I'm going through a crash and can hardly get out of bed.

Can one decide the las minute to attend or do you have to reserve a space.

I want to write a letter to them but want to sound as effecyive as possible.
Anyone have any suggestions as to what the most important points to be are?

Do you think that personal testimony as to how one suffers through this disease should be included? Like losing you life, friends, money, hope?

Do they really care about our sob stories?