Friday, June 21, 2013

Disabled workers paid just pennies an hour – and it's legal

At one workplace in Florida run by a nonprofit, some employees earned one cent per hour in 2011.

"People are profiting from exploiting disabled workers," said Ari Ne'eman, president of the Autistic Self Advocacy Network. "It is clearly and unquestionably exploitation."


* * *

A penny an hour -- 8 cents for a full day -- they're LOSING money by working, since it probably costs more than 8c of gas for their families to get them to work.

If this is the option for disabled people, then why is anyone surprised that they choose to collect Disability without working?  You can barely survive on SSDI, without then unnecessarily paying out money for bus fare to get to a job that pays so poorly it doesn't allow you to make a profit on your commuting expense.

Wednesday, June 19, 2013

Kathie Lee Gifford and Hoda laugh at disabled people on air! - News

Hoda Kotb and Kathie Lee Gifford think disabilities are funny.  #KLGandHoda will have to do without my viewership.
They think cognitive dysfunction must be caused by smoking pot.  Maybe their insensitivity problems are caused by drinking too much wine at 10 AM?

Fatigue Is Not a Disease

In the U.S. over 30% of existing MS patients – that's 1,584 people - were diagnosed with CFS before being correctly diagnosed with MS. These are people who, had they been properly diagnosed in the early stages of the illness, would have had access to treatments that might have slowed or even halted the progression of the disease. Instead, they were told they had "chronic fatigue syndrome," an illness for which there is no treatment. Those 1,584 people have now had their diagnoses corrected to MS. Just imagine how many people with MS are currently being diagnosed with CFS.

Tuesday, June 18, 2013

FREE e-book

Note: The State of Me by Nasim Marie Jafry is available to download
for free for the next 2 weeks. Book is available at-


Free ebook and a review!

Summer give-away by The Friday Project: the ebook version of The State
of Me is available as a free download for a limited period! I was
pleased to see this new, rather lovely, review (4 stars) on Amazon
yesterday: I love the honesty of the review and that the s/he feels
bad about pointing out the 'negatives'.

"This chatty, funny and insightful book was thoroughly absorbing.
Nasim has done a wonderful service to people with ME, by being very
open about all aspects of the illness but never self-pitying nor
boring! The reader can only cheer her on whilst she snatches what life
she can out from under the debilitating illness. All the characters
are written well and the writer has a knack for portraying relations
deftly but true. It was truly a joy to read, if sometimes a little
heartbreaking.The only reason I haven't given the book 5 stars is that
I felt it could have done with editing down a little of some of the
inconsequential chatty detail. The author plays with form, which is
wonderfully entertaining, but I would have liked to have seen it used
more consistently which I think would have made it more affective. For
instance the author swapped between first and third person for the
first part of the book, but at some point that was just dropped.
Perhaps it could have been used to great effect later on, or perhaps
that needed to be edited out altogether? I feel mean writing the above
though, because this book has been my constant companion for days and
I've read it every chance I got".

I felt I wanted to respond to the points made, not as criticism (a
reader's views are a reader's views) but more for clarification. The
'inconsequential chatty detail' made me smile, having just ploughed
through Knausgaard (see previous post) where the dialogue is often
inconsequential. A favourite scene of mine ( A Man in Love) is a New
Year party where the dialogue suddenly comes 'alive', there are
conversations dripping with meaning, long sentences, which contrast
sharply with the previous, often static, 'purposeless' dialogue.
Knausgaard's point is that dialogue *is* often boring and
inconsequential, and in The State of Me, pared down dialogue (that
doesn't move the plot along) is to reflect the utter tedium of chronic
(at times, severe) illness. The points about the shifts from third to
first person are a little more challenging as a great deal of time
and energy (I view everything in terms of energy) was used on these
shifts. The technique was not simply 'dropped' as the reader has
observed, it was deliberate. Third person is used for when Helen is at
her most ill and isolated, she feels she is in a play, watching
herself; first person slowly takes over as she 'improves' and makes
some kind of progress. Still, it is always interesting to hear how
your writing is perceived. That is the whole point!

Enjoy the free ebook, it is only for two weeks. Please do write a
review on Amazon or Goodreads or blog or Twitter if you can. Reviews
are hard to write (at least, I find it hard) and I always appreciate
when people do write a review, even a very short one.

Posted by nmj at 18.6.13

A Young Man, a Big Disease and a Big Idea

A Young Man, a Big Disease and a Big Idea
By Llewellyn King Published June 17, 2013 – 8:13 pm

We expect big ideas to come from young people in computers, social
networking and music. In medicine, less so.

So meet Ryan Prior, age 23, of Atlanta, Ga. He suffers from a little
understood but ghastly disease of the immune system known in the
United States as Chronic Fatigue Syndrome (CFS), and in the rest of
the world as Myalgic Encephalomyelitis (ME).

The disease is mostly incurable; affects men and women, but more women
than men are recorded; and the Centers for Disease Control (CDC) in
Atlanta says there are 1 million victims in the United States and 17
million worldwide.

Its impact is horrific; confiscating lives, wrecking homes, sundering
love affairs and grinding down caregivers and families. For the most
part, the sick are sick until they die. Some are bedridden for years.
Advocacy groups say suicide is high. I have received many letters from
patients who say they can't take the pain, the helplessness and the
stigma any longer, and beg for a quick release.

Despite all this, the disease gets short shrift from the National
Institutes of Health and the CDC, although patients say they get a
better hearing at the Food and Drug Administration.

Enter the over-achieving young patient, Ryan Prior. His story begins
on Oct. 22, 2006. Like many victims he knows exactly when he was
felled, when normal life had to be abandoned. He entered a dark world
where good times are marked in hours; where bad times are days, weeks
or months in darkened, silent rooms.

Prior was student president at Warner Robins High School in Warner
Robins, Ga. (about 90 miles south of Atlanta), captain of the
cross-country team and was taking three advanced placement courses.
"My goal was to attend Duke University or West Point with the ultimate
goal of becoming an Army Ranger," he said.

By Nov. 15, 2006, Prior had to quit school. Under a Georgia plan for
educating sick students, "my physics teacher taught me heat transfer
while I was lying on the couch," he said. But he slept through

Ryan still hoped to make it as an athlete. During a brief respite, he
was back on his soccer varsity squad. But it was a disaster. He had
been put on a drug that provided a short energy boost. "I went to a
practice and played for about five minutes. I did OK for the first
minute. After five minutes, I realized I had to stagger off the field
as soon as possible. If I didn't get off voluntarily, I knew I would
have to be carried off soon after."

After seeing 15 doctors, who knew little or nothing about the disease,
Prior found one who has helped him. Now, he says, he functions 90
percent of the time if he takes 15 to 20 pills a day and avoids
overdoing it. Ultimately, he graduated Phi Beta Kappa from the
University of Georgia.

But it's the almost complete ignorance of CFS by most doctors that has
set Prior on his big idea project. He is making a documentary film
about the disease with young filmmakers, and with a $12,000 budget. He
hopes the film will lead to $50,000 in funding to create "an
eight-week summer fellowship program" for medical students, between
their first and second years, to study with recognized experts in CFS.
They would, according to Prior, provide each student with a stipend of
$5,000 for the eight weeks.

Prior has compiled a list of nine doctors or clinics preeminent in the
field who he believes would accept the fellows. The end result: a flow
of young doctors with a knowledge of CFS and new ideas.

I can attest that this is desperately needed. As far as I have been
able to determine there are many states, including West Virginia and
Rhode Island, where there are no doctors with specialized knowledge of
the disease. One woman travels from Delaware to Manhattan for
treatment with Dr. Derek Enlander, and many have moved Nevada to be
near Dr. Dan Peterson in Incline Village and the Whittemore-Peterson
Clinic in Reno.

If Prior's plan works, it may lead to a much larger training effort in
the United States and across the world.

"The message is simple: American history has progressed in a logical
line from women's rights, through civil rights, then to gay rights,"
Prior says, adding, "Medical history has a similar process of
ridicule, repression and ultimate acceptance: MS, AIDS, and now we
want CFS to be the next step." – For the Hearst-New York Times

Sunday, June 16, 2013

$12,000,000 in funding to be distributed later this year by the Patient-Centered

$12,000,000 in funding to be distributed later this year by the
Patient-Centered Outcomes Research Institute (proci).

Two networks, one led by The CFIDS Association, the other led by The Open
Medicine Institute are working to be allowed to apply for the funding. It is
critical that the organizations which serve those suffering with ME/CFS,
fibromyalgia and other neuroimmune diseases join BOTH groups.

Suzanne Vernon, Scientific Director of The CFIDS Association, has made a
video urging support of both of the two networks so that both have a chance
to be awarded of up to $1,000,000 each this year.

Suzanne's video can be viewed on the ME-CFSCommunity Main Page
( or at

Everyone is urged to not only view this objective and non-partisan video but
to download and repost it on as many websites as possible to maximize its
reach and effectiveness.

cfsKnowledgeCenter has joined both The CFIDS Association led and The Open
Medicine Institute led networks and encourages all other organizations to do
the same. We believe it is imperative that every organization in the United
States which, is in any way associated with ME/CFS, fibromyalgia or other
neuroimmune disorders, join BOTH networks to maximize our chances of
receiving these awards.

Dan Moricoli

Executive Director

cfsKnowledgeCenter, Inc