ME/cfs & DHHS -Let your Voice be Heard

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Massachusetts CFIDS/ME & FM Association

Education, Support and Advocacy since 1985

Massachusetts CFIDS/ME & FM

Association News

LET YOUR VOICE BE HEARD

This month, your signature on a request to

the Department of Health and Human

Services could help make a difference in

the goal of obtaining better research,

treatment, and physician/provider

education for CFIDS/ME/CFS.

Please read *A Joint Request for Action*

and consider adding YOUR name in

support..

A JOINT REQUEST FOR ACTION

The Chronic Fatigue Syndrome Advisory

Committee (CFSAC) makes

recommendations to the Secretary of

Health and Human Services on issues

related to ME/CFS. Committee meetings

are held twice each year, last two full

days, and provide an opportunity for

*Public Comment* by patients, advocates,

and other individuals who wish to be

heard.

During the Public Comment portion of the

meeting held this month, a letter

addressed to the Department of Health

and Human Services (DHHS) entitled

*Joint Request from the ME/CFS

Community for Action* was presented on

behalf of 14 patient organizations and 19

individual advocates. The Massachusetts

CFIDS/ME & FM Association contributed

to this letter and was one of the

organizations involved.

The Joint Request asks that key DHHS

staff members meet with patient

representatives in order to begin

formulating a comprehensive plan to

respond to the challenge of ME/CFS.

It also states *there is an urgent need for

the Department of Health and Human

Services to undertake a strategic,

coordinated, and fully-funded effort to meet

the critical need for adequate ME/CFS

research, treatment, and provider

education.*

Specifically, the letter requests *a

significant, sustained and coordinated

commitment from DHHS to address the

following four key priorities:

1) Resolve the Definition, Name, and

Classification confusion

2) Provide a fair share of Research

Funding, focused on Biological

Pathologies, Biomarkers and Treatment

3) Educate the Medical Community

4) Accelerate the FDA pipeline for

ME/CFS.*

The letter asks for a response by August

1st and asserts *it is time for the United

States government to embrace this

disease with the seriousness and vigor

that characterized the fight against

HIV/AIDS.*

Please add your name in support to help

make sure this request is heard *loud and

clear.* Ask your family and friends to sign

as well. The more signatures we add to

the list, the greater the chance of

success.

Add your name in support:

http://chn.ge/LWm5rr

Note: A video of the CFSAC meeting

should be available for viewing on the

CFSAC website sometime next month.

Once a link is provided, it will be published

on the Association's website at

www.MassCFIDS.org

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The film *Invisible* gives voice to a group of

Vermonters who offer first person

accounts of life with Chronic Fatigue

Immune Dysfunction Syndrome, *the

disease with a thousand names and no

known cause or cure.*

*Invisible* is shown in its entirety, free of

charge, following a panel discussion

presented by The Vermont CFIDS

Association. Host Rik Carlson and

panelists Terence Naumann, MD and

J. Friedman PhD offer insights on

living with the illness, the perspective of

the medical community, the need for

comprehensive provider education and

more. The film is appropriate *for parents,

spouses, brothers, sisters, friends,

neighbors, employers, and physicians.*

View the film: http://bit.ly/LWmDxw

(To view the film free of charge, click on the

arrow at the bottom left of the movie

screen.)