ProHealth health Vitamin and Natural Supplement Store and Health
Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help

|
|
|
|
 
Print Page
Email Article

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

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

previous article next article

“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.


previous article
  Rating 5 (15 votes) next article




DISCUSS THIS ARTICLE   (1 existing comment) 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
 
Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Our FREE
Newsletter
Subscribe Now!
Receive up-to-date ME/CFS & Fibromyalgia treatment and research news
 Privacy Guaranteed  |  View Archives

Save on Your Next Order

Featured Products
Natural Resveratrol Natural Resveratrol
Powerful Antioxidant Support + Positive Anti-aging Effects
Omega 3-6-9 Omega 3-6-9
All three EFAs in one convenient form
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength
FibroSleep™ by ProHealth FibroSleep™ by ProHealth
The All-in-One Natural Sleep Aid
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils

Most Viewed Articles
What's the Hidden Cause Behind YOUR Fibromyalgia Flares? [more]

Pridgen Reports Fibromyalgia Antiviral Trial Results “Very Positive”: Predicts New Approach Will Be ... [more]

Massage Therapy Studies for Fibromyalgia Reviewed [more]

How to Limit or Minimize Your Fibromyalgia Flare [more]

Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME [more]

VIDEO: IACFS/ME Conference - Summary of Research by Dr. Komaroff [more]

The Devil Is In The Details – A Herpes Simplex Virus Inquiry For Fibromyalgia and Chronic Fatigue Sy... [more]

Sympathetic Nervous System Dysfunction in FIbromyalgia and Overlapping Conditions [more]

Review of Nutritional Supplements Used for ME/CFS and FM [more]

FREE: Stop Feeding Yourself PAIN Guide [more]


FIBROMYALGIA RESOURCES
What is Fibromyalgia?
Fibromyalgia 101
Fibromyalgia Symptoms
Fibromyalgia Treatments
| CFS RESOURCES
What is CFS?
ME/CFS 101
ME/CFS Symptoms
ME/CFS Treatments
| FORUMS
Fibromyalgia
ME/CFS
ADVANCED MEDICAL LABS
WHOLESALE  |  AFFILIATES
GUARANTEE
CONTACT US
PRIVACY
RSS
SITE MAP
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing