Thursday, March 24, 2011

Should you sue?


"A hospital emergency room is never allowed to delay treatment so long that it catastrophically injures the patient; that's a rule of patient safety," Collins explains.

"Some say there are lots of frivolous lawsuits, but lawyers would be fools to take on a frivolous case," says Barry Furrow, director of the Health Law Program at the Earle Mack School of Law at Drexel University.

"The idea that medical malpractice is free money for unhappy patients is wrong," says Jeffrey Toobin, CNN senior legal analyst. "Malpractice is not about bad results; it's about bad conduct by medical professionals," he says.

If you'd like to contact an attorney to find out whether your situation would qualify, and the American Board of Professional Liability Attorneys allow you to search for medical malpractice attorneys in your area.

"I'm hoping doctors and nurses all over the country will want to go check their emergency room to make sure what happened to Malyia Jeffers doesn't happen in their facility," Collins says. "So we're improving care for children all over country."

* * *

For CFS patients, the "standard of care" may be a sticking point, because there is, as yet, no "accepted treatment".  Lawyers weren't interested in my case when they heard what my diagnosis was, because first they'd have to convince the jury that CFS is real.

Nonetheless, I filed the lawsuit myself so that it'll be a matter of public record that these doctors don't listen to patients.  In the future, someone else will be able to point to the fact that there was a prior lawsuit with the same claims of the doctors ignoring the patient's symptoms.  Meanwhile, I did force them to spend their valuable time dealing with the paperwork.  I'm told the worst culprit turned sickly green when he was handed the lawsuit and told what it was and why.

I wasn't expecting the lawsuit to accomplish anything for me, but it might help someone else in the future by proving this clown has a history of not listening and of diagnosing female patients as "depressed divorcee" even when they had objective physical symptoms (like a rash or bronchitis) to prove there's something wrong.


SSDI update

On February 4 I was finally determined by a judge to be disabled.  Here it is 7 weeks later and I still haven't seen any money, haven't gotten the paperwork to sign up for Medicare. 
Since my file was previously "lost" in the system for 2 years, my lawyer nudged the judge to make sure I wasn't falling through the cracks again. 
She says it takes 60-90 days to get the written decision.  I got mine the other day, which had the disheartening news that the approval is now being sent to another office, which can take as much as 60 days to get their paperwork to me.
So, on top of the 11 years I had to wait for a judge to agree that I'm disabled, it could be six months on top of that before I see any money or government health insurance, and who knows how long after that before IHSS is able to send someone to help with the chores I can't manage myself.
If you're talking to someone who's convinced that all slackers have to do is say "I'm disabled" and government benefits immediately start flowing, tell them my story.  When I first lost my job, I was told "sell your house", and did the math that the money would cover rent and other expenses for only 10 years, so I would have been homeless for the past year if I'd followed that advice.
In fact, VocRehab has been saying since the very first hearing that there's no job I could do, and the judge has been substituting his own opinion "you look healthy to me" for their expertise.  A lot of extra expense to the taxpayer to keep having one hearing after another, repeated involvement of government lawyers in reviewing appeals.  
And, apparently, there's no recourse against the SSDI judges for discriminating because they don't like the name of my diagnosis; the symptoms and limitations were more than enough to qualify for benefits when I first filed in 2000, but because the judges were looking at the name CFS and assuming I was just depressed or just lazy or faking, they kept turning me down on subjective bases instead of reading the doctors' reports of objective restrictions and limitations and listening to the VocRehab experts.

Share Your Story - Dr. Oz

Dr. Oz is asking for our stories! Let's flood him with ME/CFS, Lyme, NeuroImmune, XMRV stories. This is such a huge opportunity as he's actually seeking our information. If you are 25-35 y.o. please take a minute to fill out the form"

Dr. Mehmet Oz (@DrOz)
If you're between the ages of 25 and 35, what are your major health concerns? Get in touch and let us know.
What topics do you want to hear about? What are your major health concerns? Do you have beauty, sex or skin related questions for Dr. Oz?

Wednesday, March 23, 2011

Speak Up About ME

A good friend who has two teen boys with severe ME/CFS has spearheaded a fabulous effort to bring awareness to young people with ME/CFS - anyone who got sick before age 21.

Even if you aren't (or weren't) a young person when you got sick or can't attend the meeting in DC, there are other ways to help.  Here is a blog post with more information:

And the project's official website:

Sue Jackson

Written Testimony Due April 18

Source: US Federal Register
        Volume 76, Number 55, Page 15982
Date:   March 22, 2011


Meeting of the Chronic Fatigue Syndrome Advisory Committee

AGENCY: Department of Health and Human Services, Office of
the  Secretary, Office of the Assistant Secretary
for Health.

ACTION: Notice.

SUMMARY: As stipulated by the Federal Advisory Committee Act,
the U.S. Department of Health and Human Services is hereby
giving notice that the Chronic Fatigue Syndrome Advisory
Committee (CFSAC) will hold a meeting. The meeting will be
open to the public.

DATES: The meeting will be held on Tuesday and Wednesday,
May 10 and 11, 2011. The meeting will be held from 9 a.m.
until 5 p.m. on May 10, 2011, and 9 a.m. until 4:30 p.m. on
May 11, 2011.

ADDRESSES: Department of Health and Human Services; Room 800,
Hubert H. Humphrey Building; 200 Independence Avenue, SW.,
Washington, DC 20201. For a map and directions to the Hubert
H. Humphrey building, please visit

Executive Secretary, Chronic Fatigue Syndrome Advisory
Committee, Department of Health and Human Services; 200
Independence Avenue, SW., Hubert Humphrey Building, Room
712E; Washington, DC 20201. Please direct all inquiries

September 5, 2002.
The Committee shall advise and make recommendations to
the Secretary, through the Assistant Secretary for Health,
on a broad range of topics including (1) the current state
of knowledge and research and the relevant gaps in
knowledge and research about the epidemiology, etiologies,
biomarkers and risk factors relating to CFS, and
identifying potential opportunities in these areas; (2)
impact and implications of current and proposed diagnosis
and treatment methods for CFS; (3) development and
implementation of programs to inform the public, health
care professionals, and the biomedical academic and
research communities about CFS advances; and (4)
partnering to improve the quality of life of CFS

The agenda for this meeting is being developed. The agenda
will be posted on the CFSAC Web site,
when it is finalized. The meeting will be broadcast over
the Internet as a real-time streaming video. It also will
be recorded and archived for on demand viewing through
the CFSAC Web site.

Public attendance at the meeting is limited to space

Individuals must provide a government-issued photo ID for
entry into the building where the meeting is scheduled to
be held. Those attending the meeting will need to sign-in
prior to entering the meeting room.

Individuals who plan to attend and need special assistance,
such as sign language interpretation or other reasonable
accommodations, should notify the designated contact
person at in advance.

Members of the public will have the opportunity to provide
oral testimony at the May 10-11, 2011, meeting if pre-

Individuals who wish to address the Committee during the
public comment session must pre-register by Monday, April
18, 2011, via e-mail to Time slots for
public comment will be available on a first-come, first-
served basis and will be limited to five minutes per
speaker; no exceptions will be made. Individuals
registering for public comment should submit a copy of
their oral testimony in advance to, prior to
the close of business on Monday, April 18, 2011.

If you do not submit your written testimony by the close
of business Monday, April 18, 2011, you may bring a copy
to the meeting and present it to a CFSAC Support Team
staff member. Your testimony will be included in a
notebook available for viewing by the public on a table
at the back of the meeting room.

Members of the public not providing public comment at the
meeting who wish to have printed material distributed to
CFSAC members for review should submit, at a minimum,
one copy of the material to the Executive Secretary, at, prior to close of business on Monday,
April 18, 2011. Submissions are limited to five
typewritten pages. If you wish to remain anonymous,
please notify the CFSAC support team upon submission of
your materials to

All testimony and printed material submitted for the
meeting are part of the official meeting record and will
be uploaded to the CFSAC Web site and made available for
public inspection. Testimony and materials submitted
should not include any sensitive personal information,
such as a person's social security number; date of
birth; driver's license number, State identification
number or foreign country equivalent; passport number;
financial account number; or credit or debit card number.
Sensitive health information, such as medical records or
other individually identifiable health information, or
any non-public corporate or trade association
information, such as trade secrets or other proprietary
information also should be excluded from any materials

Dated: March 18, 2011.
Wanda K. Jones,
Executive Secretary, Chronic Fatigue Syndrome Advisory
[FR Doc. 2011-6702 Filed 3-21-11; 8:45 am]

(c) 2011 Federal Register

Seeking Biological Causes of Chronic Fatigue Syndrome -

Tuesday, March 22, 2011

CFS Patient Advocate: "What the boys want, dad, is clarity"


What meds work for depression caused by physical pain? – The Chart

"It is almost impossible not to be depressed if your sleep is disturbed"

Raise Money for WPI with websearches

Raise research funds with your websearches:


Not only does iGive donate to WPI for every search you do, but they also find things that google doesn't.  So let's get all PWCs using iGive's search function and raise millions for research.  17 million patients worldwide, each doing only one search per day, we could give WPI a million bucks a week.

WPI has raised: $712.22

Total raised for all causes at $5,369,397.70



Unklocking ME/CFS

 4.  Unlocking ME/CFS

As scientists race to find a biological cause for chronic fatigue syndrome, long considered by many doctors to exist in patients' heads, the National Institutes of Health could shed new light on the debate at a major scientific workshop on the disorder. Researchers at the University of Utah and elsewhere are working to create diagnostic tests, based partly on proteins or other markers that appear to show up in greater quantities in patients with chronic fatigue syndrome. Diagnosing the disorder is difficult, in part because symptoms vary among patients. Other scientists are trying to understand why other infections, such as mononucleosis, appear to prompt chronic fatigue syndrome in some patients. And in a program at New York's Columbia University, researchers are seeking to identify pathogens that may appear prominently in patients with the disorder. Researchers will be testing "for all those agents that we know affect vertebrates on this globe,&qu ot; says Mady Hornig, who heads the Columbia program.
Amy Dockser Marcus, The Wall Street Journal

Get Some Sleep: Memory loss, personality change not always dementia


Monday, March 21, 2011

Sick and tired of being called lazy, chronic fatigue sufferers fight back

Sick and tired of being called lazy, chronic fatigue sufferers fight back
From Monday's Globe and Mail
Published Sunday, Mar. 20, 2011 4:00PM EDT
Last updated Monday, Mar. 21, 2011 12:40PM EDT

A serious health condition takes a physical, psychological and even
financial toll on anyone. But those who have been diagnosed with
chronic fatigue syndrome face an additional challenge: convincing the
world the disorder exists.

The serious extent of the problem was brought to light recently when a
federal worker won a grievance against her employer for forcing her to
work in a physically demanding job, despite knowing the woman suffered
from chronic fatigue syndrome. The case exposes deeply held
stereotypes about chronic fatigue syndrome and how little recognition
there is for the disease.

Chronic fatigue syndrome, or CFS, is a complex disease characterized
by debilitating fatigue that doesn't go away even after a person gets
a lot of rest, as well as a variety of other symptoms that persist for
months, including sore throat, joint and muscle pain or headaches.

There is no blood test or other exam that can positively identify CFS.
Rather, CFS is a diagnosis of exclusion, meaning it is made only after
doctors have ruled out other possible conditions.

The medical community also doesn't have a clear understanding of what
causes the disorder and how it develops.

As a result of all these elements, many people with CFS are often
faced with misconceptions, and stereotypes – for instance, that it's
not a real condition and that anyone who has it is simply lazy, tired
or unmotivated.

The extent of the prejudices against CFS sufferers came to light
recently in a hearing before the Public Service Labour Relations
Board, a tribunal that hears grievances from federal employees.

Teresa Panacci, a chronic fatigue sufferer who works at the Canadian
Border Services Agency (CBSA) in Mississauga, launched a grievance
after her employer moved her from a sedentary position behind a desk
in 2004 to a job in the mail room where she had to lift and move heavy

She told her boss she didn't want to be transferred, but was told she
had no choice, according to Patricia Harewood, a grievance and
adjudication officer with the Public Service Alliance of Canada who
represented Ms. Panacci at the hearing. Ms. Panacci worked in the
mailroom for several months and eventually collapsed on the job. She
then went on sick leave for nearly a year.

CBSA had asked Health Canada to perform a "fitness to work" evaluation
once Ms. Panacci complained about being moved to the more physically
demanding position. Ms. Panacci was examined by an independent doctor
who determined she did seem to meet the criteria for chronic fatigue

Despite this, the final report assessing Ms. Panacci's condition,
written by a doctor who didn't personally examine her, said there
didn't seem to be any physical reason why she couldn't work in the
mail room and suggested the problem was her attitude, not chronic
fatigue syndrome.

The assessment report stated: "There is a matter of motivation and job
satisfaction involved more than a medical condition," according to
evidence presented at Ms. Panacci's hearing.

The report noted that since Ms. Panacci felt better when not working
in the postal department, she should apply for a new, more satisfying
job and help end "a tendency to medicalize such issues."

Ms. Panacci eventually applied for, and got, a less strenuous job in
the same department, although she wasn't able to return to work
full-time until 2009.

The adjudicator ruled in her favour and ordered her employer to
reimburse her for time lost to sick leave and the four years in which
she was only able to work part-time because of her CFS symptoms.

Details of the case, published on the labour relations board website
in January, demonstrate how pervasive negative stereotypes against
people with CFS are.

"There's definitely a stigma that is attached to certain illnesses,"
Ms. Harewood said. "More and more we are having to litigate these
cases because of the stereotypes
… and the fact there isn't consensus
in the medical community as to whether, in fact, they are recognized
as disabilities."

Jody Smith is all too familiar with the negative stereotypes attached
to CFS. When she first approached her doctor years ago with
debilitating fatigue and other serious symptoms that interfered with
her everyday life, he told her that she should stay in bed, since that
is the only thing that made her feel better.

Ms. Smith went to see a naturopath who believed that she indeed
suffered from chronic fatigue syndrome and recommended various
treatments. Four years later, Ms. Smith said she has seen a
substantial improvement and is able to work from home, writing
health-related articles, as well as connecting with other CFS
sufferers on the website

Although some people do recognize CFS as a legitimate medical
condition, Ms. Smith said she and countless other people with the
disorder are accused of faking it. She describes CFS as an invisible
disease: Many people don't acknowledge it's real; those who have it
are often bedridden and become isolated, and large segments of the
medical community ignore it, she said.

"There are some terrific doctors out there and there are some
tremendous naturopaths … but from where I sit, in general, the medical
community does not see us," Ms. Smith said.

Margaret Parlor, president of the National ME/FM Action Network, an
advocacy group for people with CFS and fibromyalgia, said part of the
reason the disorder doesn't have broad recognition is it's difficult
for others to understand it.

Friends and family of CFS patients may tell them they should exercise
more or be more active, not understanding why the individual seems so
tired all the time.

"The severe ones that are severely fatigued, these people talk about
just having the energy to clean their teeth and comb their hair in the
morning," said Eva Libman, associate director of behavioural
psychotherapy and research unit in the psychiatry department at Jewish
General Hospital. "They just find it very challenging just to get
through the day."

Many people with CFS have problems maintaining jobs and relationships
because they don't have the energy, a problem that many interpret as
laziness or lack of motivation. As a result, some CFS sufferers lose
their jobs and may become isolated from personal relationships, Ms.
Parlor said.

She added that people diagnosed with CFS often have problems
maintaining proper nutrition because they have difficulty mustering
the energy to regularly shop for groceries and prepare meals.

"It's a whole cascade of effects that can happen," Ms. Parlor said.
"We still see it in a large extent because the medical cause of this
is not understood and there's not a test for it."

C-Reactive Protein (CRP) - Results -

On my first test, the reading was 28 (on a scale of 3).  So high it "had to be lab error".  They did it again a week later, and it was 30.  I was definitely not a borderline case.
We still don't know what's causing the infection/inflammation that pushes the CRP up, but at least we know it's not IAIYH.

11 Surprising Health Benefits of Sleep - sleep -

A 2010 study found that C-reactive protein, which is associated with heart attack risk, was higher in people who got six or fewer hours of sleep a night.

* * *
Chicken or egg?  Did I have elevated CRP because I was only sleeping a couple hours a night, or was I only sleeping a couple hours a night because I had elevated CRP?
The good news is, once I got the positive CRP test, it became very difficult for anyone to tell me "nothing wrong", "all in your head". 
A CRP test is available everywhere and is a lot cheaper than an XMRV test.  If you're looking for documentation for a Disability claim, try to get a C-Reactive Protein test done.