Activate Now
ProHealth me-cfs 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

Alcohol intolerance in CFS - gives us a clue as to the mechanisms of fatigue

Simplifying Nutritional Support in CFS & Fibromyalgia

How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study

Is Your Body Your Friend and Healing Ally?

Fighting Fatigue with Ground-breaking French Oak Wood Extract

Breathing Techniques for a Better Night’s Sleep

On the Path: Dan Moricoli's Remarkable Chronic Fatigue Syndrome Recovery Story

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): Characteristics of Responders to Rintat...

SURVEY: Has Your Illness Affected What You Eat?

An Interview with Dr. Jon D. Kaiser - Supporting Mitochondrial Function in ME/CFS Patients

Print Page
Email Article

May 12th, 2014 - The San Francisco and Washington, DC Demos

  [ 16 votes ]   [ Discuss This Article ]
By Erica Verrillo • • May 17, 2014

May 12th, 2014 - The San Francisco and Washington, DC Demos. Photos in SF courtesy Cecelia
Photos in SF courtesy Cecelia
By Erica Verrillo

May 12th was an unusually hot day. But that did not prevent seventeen demonstrators - patients, friends, and supporters -  from  gathering in front of the Federal Building on Seventh Street in San Francisco, where the regional HHS office is headquartered. 

The demonstration was scheduled to begin at noon, and within a few minutes of arriving, the group had set up six wheelchairs, erected banners, held up signs, arranged flowers, and displayed the photos of 11 people whose lives had been taken by ME. Susan Kreutzer passed out blue ribbons that she had made herself, and we pinned them to our clothing. 

Nobody needed to be told what to do. The entire group acted in concert, with a smooth efficiency that belied the fact that most of us were strangers to one another. 

After a short introductory speech, six of the demonstrators lined up behind the wheelchairs and read aloud the obituaries of those whose portraits were displayed.

While the obituaries were being read, the group stood quietly, listening in silence as the too short lives of these brave individuals were read. The youngest was David, age 17. The oldest was Tom Hennessy, 49, founder of May 12 International ME/CFS Awareness Day and a fierce advocate for patient rights. Tom's picture was displayed in the first wheelchair by itself. Also shown were photos of Allison Hunter (19), Lynn Gilderdale (31), Patrick Kelly (42), Casey Fero (23), Eric Moore (46), Amberlin Wu (29), Sophia Mirza (32), Emily Rose Collingridge (30), and Tracey Ash (26).

Afterwards, I entered the Federal Building with Jane Pannell to deliver two petitions demanding the cancellation of the IOM contract and the immediate adoption of the Canadian Consensus Criteria for ME. The petitions, totaling nearly 10,000 signatures, were given to HHS and to Nancy Pelosi's office, where I spoke with her long-time aide. 

I explained why the IOM contract should be canceled, and gave her the experts' letter as well as a fact sheet with important information about ME/CFS, a request for legislative action to increase funding for scientific research, and a statement that the misleading name “chronic fatigue syndrome” be replaced with Myalgic Encephalomyelitis.

Then we packed up, and repeated the demonstration a few blocks away at McKesson Plaza, where Senator Dianne Feinstein's office is located. One quick-thinking member of the group went into the building to fetch Senator Feinstein's aide, who came down to watch the demonstration. We spoke with him about the gravity of the illness, and delivered the two petitions, the experts' letter to Secretary Sebelius calling for the cancellation of the IOM contract, and a 55-page list of people who had died of ME. I handed him a copy of the obituaries the group had read.
Our message was loud and clear: "There are a million of us. We are dying of this disease. We've had 30 years of neglect from HHS, we are citizens, and we vote. It's time our representatives did their jobs and represented us!" 

What was most impressive about the demonstration was the degree to which people were willing to step up to the mat. When I asked, "Who wants to come with me to Nancy Pelosi's office and HHS?" every person there stepped forward. (The guards would only let two people in, unfortunately.) There was no question that if we had been allowed, all 17 of us would have marched into the Federal Building that day.

Washington, DC

On the other side of the country, Mary Dimmock was setting up a May 12 demonstration at the Capitol Building. This year marks the 30-year anniversary of the Incline Village outbreak that saddled our community with the name "chronic fatigue syndrome," so the theme of the demonstration was 30 Years of Neglect.

Mary and two supporters, each of whom had a family member with ME/CFS, spread the Banner of Hope on the lawn. The Banner is a 65-foot long assembly of pillow case tops, each one of which has the name and dates of illness of a person bedridden with ME/CFS. The Banner is a moving testament to the toll this disease takes on the people it strikes. The demonstrators also displayed a banner with the portraits and obituaries of people who have died of ME/CFS.

Two reporters, one from Televisa's Washington office and one from Medill News Service, came by to cover the event, and to arrange an interview with Mary. As Mary said, "Two leads is a very good thing."

Of the demonstration, Mary said, "There were mostly tourists there that day, but one person took a handout and said, 'I think this is the disease my daughter-in-law has!'"

Giving even one person such a valuable piece of information was worth it. 




Please Discuss This Article:   Post a Comment 

[ Be the first to comment on this article ]

Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Subscribe Now!
Receive up-to-date ME/CFS, Fibromyalgia & Lyme Disease treatment and research news
 Privacy Guaranteed  |  View Archives

Vitamins and Supplements for ME/CFS Support

Featured Products

Hydroxocobalamin Extreme™ Hydroxocobalamin Extreme™
The B-12 your brain needs for detox & sharpness
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
B-12 Extreme™ B-12 Extreme™
The Most Potent Vitamin B-12 on Earth
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%

Natural Remedies

Herbal Inflammation Management for Whole Body Health Herbal Inflammation Management for Whole Body Health
Block food Cravings At Their Molecular Root Block food Cravings At Their Molecular Root
Anti-Inflammatory Properties of Tart Cherry Anti-Inflammatory Properties of Tart Cherry
The Fast-Acting Solution for Healthy Digestive Function The Fast-Acting Solution for Healthy Digestive Function
Fight Inflammation and Promote Cognitive Health with High-OPC Grape Seed Fight Inflammation and Promote Cognitive Health with High-OPC Grape Seed

What is Fibromyalgia?
Fibromyalgia Diagnosis
Fibromyalgia Symptoms
Fibromyalgia Causes
Fibromyalgia Treatments
Fibromyalgia Diet
Fibromyalgia Medications
M.E. & CFS
What is M.E./CFS?
M.E./CFS Diagnosis
M.E./CFS Symptoms
M.E./CFS Causes
M.E./CFS Treatments
M.E./CFS Diet
M.E./CFS Medications
What is Lyme Disease?
Lyme Disease Diagnosis
Lyme Disease Symptoms
Lyme Disease Causes
Lyme Disease Treatments
Lyme Disease Diet
Lyme Disease Medications
M.E. & CFS
Lyme Disease
General Health
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing