ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

B Vitamins May Protect Against Damaging Effects of Air Pollution, and Improve Cognition and Psychiat...

Relief for IBS, Colitis, Crohn’s And More

Can Magnesium Relieve Your Tinnitus?

Restless Leg Syndrome (RLS) - are you running a marathon each night?

Resveratrol Proven to Slow Brain Aging

Magnesium Protects Against Stroke, Heart Disease and Diabetes

Fruits and vegetables' latest superpower? Lowering blood pressure

Neroli Oil: The Pleasantly Fragrant Citrus Oil

Restoring NAD+ could reduce DNA damage accumulation

Whole-body vibration may be as effective as regular exercise

 
Print Page
Email Article

ME/CFS Patients ‘Act Up’ - Inspire Positive Media Coverage Despite XMRV Hullabaloo

  [ 16 votes ]   [ 1 Comment ]
www.ProHealth.com • May 25, 2011


“This issue is not going away…. Heck, if we have to drag our beds to an HHS building to make a statement, it is my hope that we will do just that.”Rivka Solomon on paltry government spending for ME/CFS research

On May 10, a group of ME/CFS patients led by Rivka Solomon staged a mini-demonstration in front of the US Department of Health & Human Services in Washington, DC. Their message: Allocate more government funding for ME/CFS research, now!

Next, on May 25, a group of patients & advocates staged a similar protest in front of the HHS offices in San Francisco. See their statements in the video, below:



Positive results so far include:

A high-profile San Francisco Chronicle article on the San Francisco event ("Chronic Fatigue Patients Protest Lack of Funding," by Erin Allday). Hundreds of readers have shared the article by Twitter and Facebook, and Erin and the Chronicle can still be thanked for this coverage.

A Ms Magazine blog article on Rivka, ME/CFS, and the mini-demo campaign  (“Rivka Solomon Acts Up, Chronic Fatigue Be Damned,” by Paula Kamen). Importantly, Kamen reiterates Rivka’s challenge to other patients, encouraging them and their advocates to stage similar mini-protests at the 20 other HHS and CDC satellite and regional offices across the US.
 
A half-hour meeting between the San Francisco demonstrators and Eric Alborg, Regional Outreach Specialist of HHS’s Region 9. The group talked with him about the concerns and needs of people with ME/CFS, and he suggested ways they can raise the profile of these concerns with local institutions and legislators. He also accepted and agreed to deliver copies of a letter addressed to HHS leaders Secretary Sebelius, NIH Director Collins, NIAID Director Fauci, and Herb Schultz, Regional Director of HHS Region 9.

The letter included a list of basic ME/CFS community needs/demands plus a personal statement by San Francisco demo co-organizer Bobbi Ausubel, which reads:

“I am the mother of a daughter with the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, which has very severely limited my daughter's ability to lead a simple work and social life for over 20 harsh years. I have been her primary support. Much of the time she has been so sick she is often homebound or bedridden with disabling symptoms, not just "fatigue"! Our family's life activities and resources are centered around the health needs of this daughter (and sister) we love.

“We expect more support from our government by way of research and clinical trials for this disabling disease that affects more than a million Americans.

“Most people with ME/CFS are too ill to be standing outside HHS today for a demonstration.  Those of us gathered here are speaking for all who are ill, and we demand to have more research and clinical trials now.” – B. Ausubel

Awareness – The Biggest Idea

So - regardless of the scientific community’s eventual findings on XMRV and other issues - grassroots activists are creating a foundation for change.




Post a Comment

Featured Products From the ProHealth Store
Energy NADH™ 12.5mg FibroSleep™ Optimized Curcumin Longvida®

Looking for Vitamins, Herbs and Supplements?
Search the ProHealth Store for Hundreds of Natural Health Products


Article Comments Post a Comment

Just how much does the government spend on ME/CFS?
Posted by: fibrochondriac
Jun 8, 2011
According to Phoenix Rising $5 million a year is spent on ME/CFS research...about $5 per patient. They spend more on hay fever. This is ridiculous. Considering the cost of the illness (what is it...$20 billion I think?) it's also very stupid.
Reply Reply
 
NAD+ Ignite with Niagen

Featured Products

Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%
FibroSleep™ FibroSleep™
The All-in-One Natural Sleep Aid
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium

Natural Remedies

Prepare Yourself for Cold & Flu Season Prepare Yourself for Cold & Flu Season
Guarding Against the Dangers of Vitamin D Deficiency Guarding Against the Dangers of Vitamin D Deficiency
The Revolutionary 'Good Fat' That Promotes Heart, Brain, Bone and Joint Health The Revolutionary 'Good Fat' That Promotes Heart, Brain, Bone and Joint Health
The Surprising Benefits of Probiotics - What You Didn't Know The Surprising Benefits of Probiotics - What You Didn't Know
Thyroid Health and Fibromyalgia Thyroid Health and Fibromyalgia

CONTACT US
ProHealth, Inc.
555 Maple Ave
Carpinteria, CA 93013
(800) 366-6056  |  Email

· Become a Wholesaler
· Vendor Inquiries
· Affiliate Program
SHOP WITH CONFIDENCE
Credit Card Processing
SUBSCRIBE TO OUR NEWSLETTERS
Get the latest news about Fibromyalgia, M.E/Chronic Fatigue Syndrome, Lyme Disease and Natural Wellness

CONNECT WITH US ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus

© 2017 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map