Friday, October 21, 2016

The Real Story About Chronic Fatigue Syndrome -


even a name change, which to be truthful, has not really caught on, won't solve the problem when the imagery associated with the disease continues to be benign and misleading. As we all know, images are powerful and associating the wrong ones with the disease only helps to spread misinformation.

An exception is currently on an display in Times Square in New York: a video broadcast by the SolveME/CFS Initiative, a patient advocacy organization, which shows photos of genuine, severely ill Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients.

Friday, October 7, 2016

Register Today: Disability History & Employment Month Tele-panel

In a message dated 10/7/2016 8:56:48 A.M. Pacific Daylight Time, writes:
Celebrate the disability Inclusion Revolution with the us!
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Disability History and Employment Month Tele-panel
Tuesday, October 11, 2016
2:00 p.m. – 3:30p.m. Eastern


Moderated by
Congressman Tony Coelho, DNC Disability Council Chairman
with Special Guest
Keep a watch out for announcement!
The Democratic National Committee's Disability Council is celebration Disability History and Employment Month by hosting an interactive call with two tele-panels: Remembering Our Disability History and Future Vision for Disability Employment.  
The Remembering Our Disability History is an exciting opportunity to listen in on a conversation with some of the people who collaborated to pass the Americans with Disabilities Act and guided its promise in the last quarter century.  Brush up on your history, because this is your chance to ask the questions about the things you've always wanted to know about the advancement of some of our greatest disability policy in America.
·         Carolyn Osolinik, U.S. Senate Staff (retired) – former Senator Edward Kennedy
·         Andy Imparato, Disability Policy Director – former Senator Tom Harkin
·         Kelly Buckland, National Council on Independent Living
Then Future Vision for Disability Employment will be a slightly longer panel exploring the opportunities before us to expand opportunities for disabled youth and those in the job market. This panel will host many folks who have led the way to create jobs, improve accessibility in the work place and internships and mentoring opportunities to lift up the next generation for full integrated and equal employment.
·         Joyce Bender, Bender Consulting Services, Inc.
·         Jill Houghton, US Business Leadership Network
·         Christine Griffin, National Disability Rights Advocate & former U.S. Department of Labor
·         Tom Foley, World Institute on Disability
·         Yolanda Vargas, Intern - California Foundation for Independent Living Centers
·         Jamal Mazrui, Amazon
And finally, Ted Jackson, DNC Director of Disability Community Engagement, will share recent developments for advancing disability policy through the Hillary for America campaign and supporting the Democratic ticket.  By the call's end everyone will hear about chances to get involved in this election cycle that meet their needs.

We provide live captions which can be viewed by a CART link.
Access Code:  J17BT63

Also check out this Virtual Fundraiser Event: 
A virtual fundraiser on Hillary Clinton's Autism Plan featuring Representative Tony Coelho and hosted by Julie Kornack, Anna Perng and Paul Terdal will take place on Thursday, October 13, from 6:00 pm to 7:00 pm EDT. For more details, please contact Julie Kornack at or Anna Perng at
Signing of the Americans with Disabilities Act on July 26, 1990 at the White House. President George H.W. Bush sites at a table with the White House lawn and foundatin in the bakcground.  Two men in wheelchairs sit on either side of the table.  On the left a man stands and on the right a woman stands.
Above: signing of the Americans with Disabilities Act on July 26, 1990 at the White House. Below: pictures throughout the disability rights history from rallies, marches and the 504 Protest in San Francisco., CA
People march in a parade led by people rolling in wheelchairs.  The hold a large banner that says: "An injustice anywhere is an injustic everywhere - Martin Luther King, Jr."
Disability rights icon Judy Heumann sits in her wheelchair being interviewed by members of the television press in fron of a van at the 504 Protest.
A large crowd at a rally, many of the people use wheelchairs. they hold a U.S. Flag with the stars in formation of a wheelchgair disability symbol.
A picture of Ed Roberts in his wheelchair, behind himn a man stands and holds a sign that says: "CIVIL RIGHTS FOR DISABLED."
Copyright © 2016 DNC Community Engagement, All rights reserved.
You are receiving this email because you signed up for the DNC's Disability Action Team, are a Democrat with a Disability or were referred by a friend or colleague.

Our mailing address is:
DNC Community Engagement
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Washington, DC 20003

Disability Positions of the 2016 Presidential Candidates

Think before you vote -- the candidates have very different takes on the disabled.

Thursday, September 22, 2016

Clinton Puts Focus On 56 Million 'Invisible' Voters With Disabilities


"This is starting to indicate that we are being taken seriously as a large population, as a group of voters who can legitimately contribute to the outcome of the election," says Ladau.

... One in five Americans has a disability. Add in their loved ones, and, advocates argue, this is a potentially powerful voting bloc. 

Friday, September 16, 2016

Myalgic Encephalomyelitis - National Organization for Rare Diseases

 studies suggest that in individuals with ME the viruses can trigger cascading events in the central nervous system through chronic activation of the immune system which, in turn, can result in widespread (diffuse) neurological dysfunction, changes at the cellular level, and nerve cell injury and death. Even when not actively replicating, an infection can lead to profound dysregulation of the immune response, causing neuroinflammation which destabilizes overall brain function, and producing symptoms with widely fluctuating severity levels Viruses also do not continually replicate, but do so at times of immune vulnerability, such as at times of physical or psychological stress. Unfortunately, viruses go latent, then they reactivate, and repeat this patterns, and once in your cells, any elevation of cortisol levels can cause the reactivation.

Wednesday, September 7, 2016

How anti-social-media sentiment hurts the disabled

Naomi Chainey shares her experience with chronic fatigue syndrome and
how social media is connecting those living with disabilities like
never before.
Those who take their potential to interact with the world for granted (the default able-bodied audience) are less likely to interpret Kuczynski's periscope as a lifeline. In actuality, Kuczynski seems to be depicting social media as a barrier to true participation.
... As fellow ME/CFSer Samantha Whitehead put it "Facebook has been such a lifeline for me. Not only because disability has curtailed my socialising, but also because I was able to maintain friendships despite being physically and socially isolated by an abusive partner."
* * *
These days, most of my good friends are from various ME/CFS support groups.  If I mention among able-bodied people that I managed to feed the cats AND myself breakfast before going back to bed, there are comments about being lazy.  In support groups, people understand what an accomplishment that is.  They recognize that there were times when I barely got the cats fed before collapsing.  I get cheers for doing as much as I do, rather than lectures because I'm not doing more.


Monday, August 29, 2016

Metabolic features of chronic fatigue syndrome

We targeted 612 metabolites in plasma from 63 biochemical pathways by hydrophilic interaction liquid chromatography, electrospray ionization, and tandem mass spectrometry in a single-injection method. Patients with CFS showed abnormalities in 20 metabolic pathways. Eighty percent of the diagnostic metabolites were decreased, consistent with a hypometabolic syndrome. ...
 Our data show that despite the heterogeneity of factors leading to CFS, the cellular metabolic response in patients was homogeneous, statistically robust, and chemically similar to the evolutionarily conserved persistence response to environmental stress known as dauer.

Monday, August 22, 2016

Becoming Disabled - The New York Times


This is the first essay in a weekly series by and about people living with disabilities.

Friday, August 19, 2016

Laura Hillenbrand: Leaving frailty behind

Author Laura Hillenbrand: Leaving frailty behind
Paul Costello on August 17, 2016

Laura Hillenbrand speaks like she writes: beautifully. She captures
moments like getting on a horse to ride again in ways that make you
feel like you, too, are riding and feeling the wind in your face.

Hillenbrand, one of the most successful writers of modern times, has
suffered many years from chronic fatigue syndrome or, as she likes to
refer to it, myalgic encephalomyelitis syndrome. (She despises the
term CFS, as she thinks it portrays those who suffer from it as lazy
and contemptible.) Astonishingly, she wrote two great books while
enduring vertigo and extreme exhaustion from her illness. Seabiscuit
and Unbroken captured the imagination of readers and there are more
than 13 million copies in print. Seabiscuit is the story of a
racehorse that captured America's heart during the Great Depression
while Unbroken details the saga of Louis Zamperini, who survived a
bomber crash in the Pacific in World War II and spent two and a half
years as a prisoner of war.

For the summer issue of Stanford Medicine magazine, a special on
well-being, I was curious what the word "well" meant to someone who
has been unwell for so long – so I reached out to the author. In the
conversation that followed, she graphically detailed how she was
ravaged by the disease and how – after being stricken in 1987 – her
symptoms at times were so severe that for two years she was
incapacitated and house-ridden. She told me she has made a lot of
recent changes in her medical treatments and in her life; she has
pushed a lot of boundaries such as moving across country to Oregon to
be with her boyfriend.

I sensed that Hillenbrand has uncovered a range of newfound strengths
and is trying to leave her frailty behind. While she knows she can
never escape her chronic illness, there is a sense of optimism and
wonderment in her voice over her new beginnings.

As we ended our conversation I couldn't help but ask about a new book.
She says she's not ready to disclose the topic yet, but it will be "a
whole lot of fun."

Hopefully, readers who have loved her work will relish this 1:2:1
podcast for her startling frankness about how she achieved great
writing success while besieged by a mysterious illness. For others who
don't know Hillenbrand's writings or her personal story, I hope
they'll be in awe – as I am – that she did such excellent work while
smothered in pain and darkness.

Thursday, August 18, 2016

Hillary's stance on Disability

The thought of considering Clinton felt hypocritical of me.  I told myself, "How can I support someone who probably cares more about Wall Street than me?"  But I certainly couldn't consider Donald Trump, who mocks disabled people and assumes we're stupid enough to think that's not what he was doing.  So, begrudgingly, I told a Hillary supporter with a disability that I was now considering supporting Hillary. He immediately introduced me via email to a blind Clinton staffer. Within literally minutes, she emailed me at 9 p.m. saying she would like to speak to me about the campaign. I was so encouraged by how quickly they responded, after the months I was ignored by Bernie.
She didn't treat me like a nuisance like the Bernie campaign did but rather an asset.  She wanted to know my legal and advocacy opinion on disability policy.  She explained in detail how Hillary planned to initiate change for us with sophisticated, legal political strategy.  And, then she asked me to come on board and help the campaign best meet the needs of the disability community ...  I soon realized that the Clinton campaign didn’t just care about the disability community; they hired us and treated us like the intelligent people we are. 

Check out Disabled Discounts Discount Listings

Check listings for discounts available for the disabled.  In some areas, you can even save on your property taxes.

Friday, July 8, 2016

Pregnancy and ME/CFS

"Pregnancy and ME/CFS"
By Peggy Rosati Allen, MS, CNM, WHNP

Thursday, July 7, 2016

How to get rid of a disease.....


In 1954, the government redefined polio. I wrote about this other little detail of history that has been widely overlooked in my article "Polio Wasn't Vanquished, It Was Redefined."11 Dr. Greenberg explained this classic example of government sleight of hand…

In order to qualify for classification as paralytic poliomyelitis, the patient had to exhibit paralytic symptoms for at least 60 days after the onset of the disease. Prior to 1954, the patient had to exhibit paralytic symptoms for only 24 hours. Laboratory confirmation and the presence of residual paralysis were not required. After 1954, residual paralysis was determined 10 to 20 days and again 50 to 70 days after the onset of the disease. This change in definition meant that in 1955 we started reporting a new disease, namely, paralytic poliomyelitis with a longer lasting paralysis.12

* * *
And three decades later, they defined Myalgic Encephalomyelitis out of existence by changing the name to Chronic Fatigue Syndrome.
As Dr. Dowsett noted, when they changed the name, all research and knowledge about ME "disappeared" -- the connection was lost and we were persuaded that we had a new disease about which nothing was known, rather than that we had an old disease with decades of research.

Tuesday, July 5, 2016

Millions Missing Round 2, Sept. 27

Join us for #MillionsMissing Round 2 this September 27th.
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Announcing #MillionsMissing Round 2


On May 25th, you took to the streets in 13 cities around the world. You helped us trend the #MillionsMissing hashtag. Together, we made history.

This September 27th, we want to get louder, bigger, stronger. More cities, more mobilization, more press coverage. Will you join us?

STEP #1: Fill out this form

STEP #2: Join an organizing call
I want to support a protest in my area!
Copyright © 2016 The Myalgic Encephalomyelitis Action Network, All rights reserved. 
You are receiving this email because you are a member of #MEAction. 

Our mailing address is: 
The Myalgic Encephalomyelitis Action Network
PO Box 1248
PrincetonNJ  08542