CFSAC fall 09- information

[Cort]

M.A.D. About ME/CFS Group is Formed

The M.A.D. Group was formed in response to a potentially pivotal event that will occur shortly; the Oct 29th/30th CFSAC meeting at which the CDC will present its Five Year plan for ME/CFS.

The first project of the group is creating a strong voice for change in the CDC's CFS research program at the Oct. 29/30th CFSAC meeting. With patients, support groups and researchers united this meeting has the potential to become an epochal event in ME/CFS history. Dr. Jason has called it the biggest event in 25 years. We intend to do our best to make it so.

If you're interested in making a difference in the biggest research program on the planet you can join the group at

http://forums.aboutmecfs.org/group.php?groupid=4

 

[Cort]

The CFSAC is the federal advisory committee on chronic fatigue syndrome. It advises the Secretary of Health on the federal response to ME/CFS including research, treatment and disability. Among the agencies it interacts with are the Centers for Disease Control, the National Institutes of Health and the Social Security Administration.

Four slots are open, one of which is the patient representative . You can provide letters of support for people youd like to see nominated.

My Picks - There are a lot of very worthy people with impeccable credentials on the list - virtually everyone, from what I can tell, would be a real asset. Its impossible to know who would be most effective but there are some people in particular that I would love to see on the panel. They include Dr. Donnica Moore, Dr. Judy Mikovits, Dr. Dan Peterson (and, of course, myself.)

I think Dr. Moore brings a presence and visibility given her media activities, that would be very helpful. Dr. Mikovits brings years of experience in the federal research system. Dr. Peterson brings years of experience treating patients and a fierce commitment to them and he has been a strong critic of the slow as mud federal approach to this disorder. As a patient I bring a great deal of frustration at the slow pace of research plus an active interest - demonstrated in the many blogs and papers Ive written - in why the federal approach to this disease has been so halfhearted and disappointing.

Letters Of Support - The letters of support can be sent to the office of Wanda Jones either by regular mail (see bottom) or email to cfsac@hhs.gov . If the letters of support are sent via email, put in the subject line Letter of support for CFSAC nominee (eg. Dr. Donnica Moore) and at the bottom of the letter put in your name and address so they know its a real person and have something other than just an email address to refer to.

They should be sent in the next two weeks.

CFIDs Association of America (information on their picks)

• Bruce Allshouse
• Christoph Bausch, PhD:
• Dane Cook, PhD:
• Michael Houghton, PhD:
• Judy Mikovits, PhD:
• Donnica Moore, MD:
• Daniel L. Peterson, MD:

PANDORA

• Dr. Peterson
• Dr. Albert Robbins
• Barbara Soliday
• Dr. Martin Pall
• Dr.Jacob Teitelbaum
• Dr. Herbert Hyman
• Steve Krafchik, Esquire
• Caroline Fibrance, Esquire
• Jill McLaughlin

Wisconsin ME/CFS Association

• Pat Fero

Miami CFIDs Association

• Cort Johnson
• Barbara Soliday

(If other nominations are out there please send them in and Ill post them).

 

[Cort]

Deadline for CFSAC Testimony

There our various ways you can provide testimony to the CFSAC regarding the CDC's research program or any other elements.

You can ask for a five minute time slot provided testimony either in person or via phone or I believe via a video. Simply e-mail them at this address and ask for a slot: cfsac@hhs.gov. If if you want your testimony to also appear on their website you must provide it to them by October 14

You can also provide written testimony that they will place on their website. You have until October 14 to send them an attachment with your testimony on it.

I hope they get lots of testimony. You can check out the MAD About ME/CFS group for some ideas. http://forums.aboutmecfs.org/group.php?groupid=4

 

[Dolphin]

Update (not much change)

Automatic E-mail I got when posted a message today:


The next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting will be held on Thursday, October 29 and Friday, October 30, 2009, from 9:00am-5:00pm EDT. Please link to http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf to access the Federal
Register Notice.

Due to the number of requests, CFSAC public comment slots are filled. A
waiting list for public comment has been developed for those wishing to make
comments; they will be accommodated in the order received, and if no-shows
or cancellations occur.

You may submit written comment, which will be provided to the Committee in
read ahead materials and to the public on site at the meeting, if testimony
is received by October 14, 2009. Written testimony is limited to five (5)
pages.

The proceedings of the meeting will be accessible via videocast. More
information will be posted on the CFSAC website at
http://www.hhs.gov/advcomcfs/

 

[Cort]

CFSAC Alert: ME/CFS Professionals Looking For Slot to Speak

The slots for speaking at the CFS AC meeting filled up quickly. Dr. Friedberg has rounded up some prominent people (Dr. Ablashi, Dr. Lapp) who want to interject their opinions on the CDC but there are no more slots. If you're scheduled to speak either from home or at the meeting itself you can give your slot away. If you're willing to do this please e-mail me and I'll pass it on to Dr. Friedberg. Thanks!

 

[Roy S]

I'd suggest posting this on Prohealth as well.

 

[mezombie]

How about posting this on Co-Cure, Cort?

 

[srmny]

CFSAC Agenda for Oct. 29th & 30th

I may be way behind all of you but I just noticed the Agenda is up at HHS.gov.

http://www.hhs.gov/advcomcfs/meetings/index.html

Dr. Peterson is opening with a presentation on XMRV and on Friday there is a presentation by someone from the NIH.

srmny

 

[Advocate]

Hi srmny,

I see on the agenda that Dr. David Bell's name is listed after "CFS and FII/MBP." Do you know what FII/MBP? Do you know if he will just be speaking, or will he be leading a committee discussion?

 

[srmny]

Hi Advocate,

I did a simple google search and my guess is it stands for FABRICATED AND/OR INDUCED ILLNESS and Munchausen Syndrome By Proxy. I have read some of the past minutes of the meetings and I think the speaker usually takes questions from the committee and the government agency officials. This sounds like it will be a very interesting meeting. I am curios to know if an NIH speaker generally addresses the committee? I will have to look it up in the minutes of the previous meetings.

srmny

 

[*GG*]

Donate a quarter to help CDC buy a clue?

Thought this was interesting, not sure if it will get any traction?

[CO-CURE] ACT: Donate a quarter to help CDC buy a clue?Thursday, October 15, 2009 7:06 PMFrom: "Tate Mitchell" <tatemitchell@GMAIL.COM>Add sender to ContactsTo: CO-CURE@LISTSERV.NODAK.EDUHi all,

The Chronic Fatigue Syndrome Advisory Committee meeting in Washington,
D.C. is coming up on Oct. 29-30, and I know people were wanting to do
something as a form of protest against CDC's complete incompetance
towards CFS research for the past 20+ years.

I was thinking maybe if someone was going to CFSAC who felt like
giving out their address, people could send them letters with a
quarter in them to be given to CDC representatives to help them 'buy a
clue' in regards to the ongoing CFS epidemic which CDC's CFS Research
Program(CCRP) has treated as a sort of mass neurosis, even outright
hysteria for the cluster cases. Maybe a stand with a poster and a
basket could also be set up at the meeting- "Donate a quarter, help
CDC buy a clue."

If anyone is interested in being the point person on this or has a
different/better idea, such as a different address we could send them
to, email me off list or maybe just post your address so people can
start sending quarters. I just thought this way might get publicized.
Maybe after people speak they could walk to the CDC reps and place a
quarter on the table in front of them, I've never been to a CFSAC
meeting so I don't know the layout of the proceedings. Or maybe after
people speak they could throw a quarter in the basket. Just my .02, if
it sounds goofy then please disregard. I doubt the reps would accept
the 'donations', so any proceeds could be donated to WPI for good
accounting practices.

Take care,
Tate Mitchell

 

[mezombie]

Speakers at CFSAC meeting

Dr. Bell will give a presentation to the CFSAC. He is not a member of the current CFSAC, so is not in a position to lead a discussion. He will be sitting facing the CFSAC panel. After his presentation, members of the CFSAC will probably ask him questions. The following Q & A will, of course, be a discussion of sorts.

Someone from NIH is also scheduled to discuss the Special Emphasis Panel (SEP), through which all ME/CFS grant requests must go. The SEP has been criticized by advocates for having few if any people on it that have any knowledge about our illness. Quite a few are dentists!

Again, she will be a presenter, and the CFSAC members will no doubt be asking her questions.

Representatives from NIH have in the past been asked or invited to speak before the CFSAC.

 

[Dolphin]

Best of luck to everyone involved in the CFSAC meeting

Best of luck to everyone involved in the CFSAC meeting, either going to the meeting or giving oral testimony over the phone. Thanks for giving of yourself in this way.

 

[leelaplay]

ditto

ditto
We all appreciate what you are doing and look forward to reports (once you're rested of course)

Wish I could be there too! I hope the game changes!

islandfinn

 

[Jerry S]

ditto here, too

We who can't be there wish you the best. Thanks!

 

[MEKoan]

Indeed, indeed!

Thanks!

 

[_Kim_]

Best wishes for safe and easy travel - especially for those that are coming from great distances to be there.

Thanks for representing us!!

 

[kolowesi]

CFSAC meeting

I feel so represented. I will be rooting for the Phoenix Team.

It is so giving for people with such hard challenges to do this. You speak for many who do not have a voice, and no matter what happens, we are all validated by your action.

Thank you from the bottom of my heart!

Kelly

 

[Jerry S]

Empowering the Powerless

Reposted from Co-Cure:

For years and years our voices havent been heard. Many of us are too sick
to write & send letters, many of us too weak to do anything much but lie in
bed. Now we do have an opportunity to show how many of us care, how many of
us have family members who care. Simply by watching the CFSAC meeting we
will be counted as interested parties. Perhaps if enough of us watch we
will prevent Dr. Reeves prophecy about not being able to replicate WPIs
findings from coming true. Perhaps if there are enough of us watching they
will realize that they have to use the same methods the WPI used * including
the same methods of selecting patients. The samples must be from people who
fit the Canadian Criteria & the Fukuda International definition. One would
like to think that CDC kept samples from the Tahoe outbreak; after all its
a mystery illness they have not cracked. Perhaps this time the CDC will
accept the help of the WPI researchers in the event that the CDC has as much
trouble replicating findings. Unlike their refusal to work with Elaine De
Fritas.

We need to watch, and take an interest. Please dont boycott just because
you think that CFS is not ME. You will only be hurting yourselves. Just
voting present will make a difference.

Im setting my alarm clock & will be in bed, watching.

Jean Harrison

Same here, Jean!

 

[markmc2000]

they mentioned your petition

Hey tom, good job on the 1800+ signatures for the panel today. I heard it mentioned.

Good stuff!

I also turned in my testimony about CFS to the panel in letter form, I hope to find it online when they post them all.

Mark