Post inlcudes Advocacy, Solicitation and Politics

[Guest guest]

Dear Group,

While our list does not allow advocacy, solicitation or politics; several posts

have come through recently that merit some exposure. So, if you are unable to

deal with stressful topics, please disregard this post.

If you are able to digest some information, please review the following 3

categories and respond as your energy dictates:

Advocacy: FDA and supplements

Solicitation: Chase Giving and ebay Works

Politics: November 2011 Chronic Fatigue Syndrome Advisory Committee (CFSAC)

meeting minutes

regarding Chase Giving: they have sent a nice email asking friends and

relatives to click on the links and vote for our population. If you would like

to do this but did not receive that email, back-channel me and I will forward it

to you.

Thank you,

Marti Z. - Moderator

Advocacy:

FDA and Supplements

" On July 1, the US Food and Drug Administration issued draft guidance for

complying with the New Dietary Ingredient (NDI) notification protocols required

by the Dietary Supplement Health and Education Act (DSHEA)—seventeen years late.

The biggest problem is that this guidance will turn a notification system into

an approval system—a terrible precedent that will utterly cut off the supply of

nutritional supplements "

Here is a link where people can go and just give their information and a letter

will be sent automatically to their representatives:

https://secure3.convio.net/aahf/site/Advocacy?cmd=display & page=UserAction & id=833

For a sober summation of the situation, see this article from the October

Townsend Letter detailing the FDA's latest attempt to thwart the supplement

industry:

http://www.townsendletter.com/Oct2011/ltrpub1011.html

_______________________________________________

Solicitation:

Chase Giving

Your vote in the Chase Community Giving contest can allow us the funding to

continue producing ground breaking videos like our recent series, Exercise &

ME/CFS which is helping our community members all over the world to reduce their

symptoms.

It will allow us to broaden and enrich the resources available to you from our

websites as well as bring you more features from physicians and scientists from

all over the world.

To vote:

A Facebook page is required. If you don't have one - please get one, you can

easily delete it after the contest if you wish.

Sign into your Facebook Page and then go to the Chase Community Giving page and

click the button at the top of the page.

Then search for CFSKnowledgeCenter or go directly to

http://bit.ly/lkvWpU

You can vote for up to 10 organizations . . .

among the ME/CFS organizations are:

* CFSKnowledgeCenter -- me-cfscommunity.com & me-cfsknowledgecenter.com

(http://bit.ly/lkvWpU)

* Wisconsin Chronic Fatigue Syndrome Association (http://bit.ly/mlmr0c)

* New Jersey Chronic Fatigue Syndrome Association (http://bit.ly/tXpa46)

* IACFS/ME (Named AACFS on Chase) (http://bit.ly/s48mcK)

* The CFIDS and Fibromyalgia Self Help Program ( http://bit.ly/kfjQuZ)

* Rocky Mountain CFS Association Inc (http://bit.ly/s5fAJh)

* Mass CFIDS ME/FM Association http://bit.ly/sJXeQ9)

* DR. A Lerner Chronic Fatigue Sydrome Treatment

(http://bit.ly/w0HfV4))

* The Chronic Fatigue Syndrome Fibromyalgia Org of Georgia Inc

(http://bit.ly/kdavB3)

* Enterovirus Foundation (http://bit.ly/lzhRfi)

* The Connecticut CFIDS and FM Association (http://bit.ly/uqIqF7)

* The National CFIDS Foundation (http://bit.ly/sdn7BL)

As well as the following Fibromyalgia organizations are among those in the

contest, click on any of them to see their respective Chase contest page:

* FIBROMYALGIA COALITION INTERNATIONAL, Mission, KS (http://bit.ly/sDuISF)

* NATIONAL FIBROMYALGIA RESEARCH ASSOCIATION INC, Salem,

OR(http://bit.ly/tXjcAF)

* NATIONAL FIBROMYALGIA PARTNERSHIP, Linden, VA (http://bit.ly/tGfKcM)

* AMERICAN FIBROMYALGIA SYNDROME ASSOCIATION INC, Tucson, AZ

(http://bit.ly/rXNspc)

* FIBROMYALGIA ASSOCIATION OF ROCHESTER NEW YORK, Rochester, NY

(http://bit.ly/lQ4scr)

And, the following Gulf War Illness organizations are among those in the

contest, click on any of them to see their respective Chase contest page:

* NATIONAL GULF WAR RESOURCE CENTER INC NGWRC Topeka, KS

(http://bit.ly/kzsfaD)

* GULF COAST WARRIORS LTD Fresno, TX (http://bit.ly/t8FZoC)

_________________________________________

ebay GivingWorks

Here is a link to learn how to sell something on ebay and have a portion of

profits donated to cfsKnowledgeCenter.

http://donations.ebay.com/charity/charity.jsp?NP_ID=38977

____________________________________________

Politics:

A meeting of the CFSAC was held on Nov. 8th and 9th. This meeting was open to

the public. Video and .pdf minutes of the meeting should be listed on the last

website below in the next few days.

" FSAC 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. "

http://www.federalregister.gov/articles/2011/10/05/2011-25739/meeting-of-the-chr\

onic-fatigue-syndrome-advisory-committee

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