SEPTEMBER 17 -- NEXT Friday -- Deadline to send your CFSconcerns to the US government

Hope123

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The CFSAC, CFS Advisory Committee, is the US federal committee that advises the Department of Health and Human Services, which controls FDA/ CDC/ NIH/ Medicare/ Medicaid/ Social Security, etc., on issues about CFS. The announcement just came out yesterday that the meeting is OCT 12 - 14 this year.

CFSAC has allowed people with CFS to testify in three ways:

- in-person at the meeting
- by telephone
- by written letter or e-mail

This is one of the few chances where you get to be heard by government officials gathered together.

Usually, we get a couple weeks to respond but they just announced it yesterday and put the deadline for us to respond as SEPTEMBER 17 (yes, only 10 days!).

You can send your (named or anonymous) requests/ questions/ letters/ e-mails (max 5 pages) to:

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.

[Full details: http://www.federalregister.gov/arti...onic-fatigue-syndrome-advisory-committee#p-4]

[Thanks to Ruth for spotting this. I started this thread so the deadline date was highlighted. May be merged with : http://www.forums.aboutmecfs.org/sh...-CFSAC-meeting-Oct-12-14&p=121211#post121211]
 

Ruth

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Thanks, Hope, for highlighting the main details. That is very useful. I was too tired to do more than just get the notification out there last night so those interested could start working on it. We need to show that even though we've been given the minimum of time to respond that we can still muster a strong response.

Do we need more than one thread on this? That is, do we need separate threads for those planning to attend and making plans to meet up and/or share rides or accommodations and for those discussing what should be in statements and coordinating/expediting preparing them?

As for me, I hope to attend. I may try to get a spot to speak. I think we can give it up later if they run out of spots and we feel others should speak, but I don't think we can specify who would get the released spot. I think last year it went to the next on the waiting list. Does anyone remember?

For anyone reading this thread, please make sure that those you know who would/should want to go and/or present know about the dates since we have all been distracted by other recent events such as the workshop and papers and heaven knows that just having CFS is distraction enough.
 

Dreambirdie

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THANKS for the heads up. I will send my video on disk along with a letter.

Jeeeez, what long address... it's just so incredibly bu-reau-cra-tic!
 

Hope123

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Can someone please remind me of the main point(s) to make in this letter?
The most important thing is to send in SOMETHING in my opinion so that you can be counted (they count responses) and your story can be heard.

It can be as simple as telling your story -- how you got sick, how long you've been ill, what you went through to find or not find a physician, how people have viewed or treated you due to this illness, your disappointment that no treatment existed/ no honest research effort by the US due to the view that CFS is a psychological illness, etc.

Some concrete things to ask for - pick a few:

- ask that the government work actively with experienced CFS doctors/ researchers/ patient groups instead of relying on inexperienced staff to
find research subjects through telephone calls; let's not reinvent the wheel here
- ask that money be set aside to establish 5 CFS Centers of Excellence throughout the country and especially consider places like the WPI, University of Miami (Klimas), University of Medicine and Dentistry in New Jersey (Natelson), Stanford (Montoya), University of Utah (Bateman) that have lots of experience/ ongoing studies in CFS
- ask for extra funding for new researchers interested in CFS
- ask that CFSAC recommendations be conveyed by Dr. Howard Koh (our DHHS rep to Secretary Sibelius) to Secretary Sibelius and that they be read and that we get an answer (yes, no, maybe?) instead of NO response at all over the 7 years CFSAC has existed
- ask for studies on the long-term effects of CFS -- longest studies are less than 5 years yet many have lived with this for 10+ years - there are
concerns that CFS might increase the change of lymphoma

More ideas from the post below:

http://www.forums.aboutmecfs.org/sh...officials-on-Sept.-7-2010&p=120520#post120520
 

xrayspex

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thanks for the direction hope! sorta lost now with root canal today.....been a roller coaster week or so....
 

*GG*

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The most important thing is to send in SOMETHING in my opinion so that you can be counted (they count responses) and your story can be heard.

It can be as simple as telling your story -- how you got sick, how long you've been ill, what you went through to find or not find a physician, how people have viewed or treated you due to this illness, your disappointment that no treatment existed/ no honest research effort by the US due to the view that CFS is a psychological illness, etc.

Some concrete things to ask for - pick a few:

- ask that the government work actively with experienced CFS doctors/ researchers/ patient groups instead of relying on inexperienced staff to
find research subjects through telephone calls; let's not reinvent the wheel here

- ask that money be set aside to establish 5 CFS Centers of Excellence throughout the country and especially consider places like the WPI, University of Miami (Klimas), University of Medicine and Dentistry in New Jersey (Natelson), Stanford (Montoya), University of Utah (Bateman) that have lots of experience/ ongoing studies in CFS

- ask for extra funding for new researchers interested in CFS

- ask that CFSAC recommendations be conveyed by Dr. Howard Koh (our DHHS rep to Secretary Sibelius) to Secretary Sibelius and that they be read and that we get an answer (yes, no, maybe?) instead of NO response at all over the 7 years CFSAC has existed

- ask for studies on the long-term effects of CFS -- longest studies are less than 5 years yet many have lived with this for 10+ years - there are
concerns that CFS might increase the change of lymphoma

More ideas from the post below:

http://www.forums.aboutmecfs.org/sh...officials-on-Sept.-7-2010&p=120520#post120520
thanks for this reminder Hope, I was not going to do anything, but I hope to send something in. What is the address we send this to?

GG
 

silicon

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You can send your (named or anonymous) requests/ questions/ letters/ e-mails (max 5 pages) to:

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.

[Full details: http://www.federalregister.gov/arti...onic-fatigue-syndrome-advisory-committee#p-4]
GG, here is the contact info--you can either use the email address or the snail mail address
 

shiso

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I think e-mail is the safest bet at this point given that the deadline is getting close (and no need for postage or trip to the mailbox/post office!). Monday is already 9/13 and the deadline is Friday 9/17.

You can write your letter in Word and attach it to an email (or just write in the body of the email) and email it to cfsac@hhs.gov right up until Friday.

I hope we can flood them with dozens if not hundreds of letters. Remember, it doesn't have to be a masterpiece - it's all about getting your voice heard by the government and demanding that they do more for the disease. Since the majority of us cannot show up in person, this is the chance to "show up" in large numbers.

If disclosing your name is holding you back, you can always just request in your email that your submission be made anonymously. (See the CFSAC link posted above)
 

Hope123

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Thanks to everyone who is writing or has written in!

One minor point but the public videocast of last week's NIH conference is not up yet and they had mentioned it would be up in 2-3 days. I know there's a copy out on Youtube but having an "official" site to refer people to would be excellent and also for documentation purposes. Some of you might want to point this out to staff if you are going to the meeting or writing in.