Sunday, July 9, 2006

Let's try again

My latest appeal of the latest denial of disability benefits has been filed, on grounds that:

1) the judge didn't have a doctor there, even after being ordered to  

2) the judge didn't address the information from friends, even being ordered to consider their first-hand observations

3) the judge mis-stated both my testimony and the doctors' conclusions. 

Personally, I would like the judge to show me any testimony or document showing that I am currently married.  He says that I went out with my husband; the way I read that day's notes, my handyman drove me somewhere that he also wanted to go.  But I guess if the judge says it's my husband, the Court of Appeal is supposed to conclude I'm not desperate for the benefits to pay my bills, since I'm choosing stay at home with the blessing of my husband who supports me so I don't have to work.  I didn't even have that luxury when I had a husband!

The judge's whole decision was based on misstatements of facts, because there ARE no facts showing that I can work full-time.  There are a lot of facts that show I can't, but those facts are dismissed by the judge as "exaggeration", no matter what source they come from.  Even one of the doctors hired to say I could return to work with no problems made it clear that I had been allowed to deteriorate so far without appropriate treatment that I would never work full-time again.  The judge also read that report to say that I could work full-time if I'd just get off my lazy butt and stop faking.

I'm told this judge has never granted benefits to anyone under age 55 for any reason.  Therefore, every one of the hundreds of cases he rules on each year needs to be appealed.  Rough calculations, these unnecessary appeals are costing you, the taxpayer, half a million dollars a year for just this judge alone.  And there are others like him.

Does anyone have the connections to start a Congressional inquiry into judges who waste far more taxpayer money on forcing unnecessary appeals than would be spent to grant all these people their Disability benefits?

What he doesn't realize is that if my goal were to get government money for doing nothing, I could have accomplished it in 9 months, with a one-night stand.  No judge or doctor has to approve your application for welfare -- just show up at the office with a baby and a birth certificate.  And, frankly, I'd get more money and better medical care if I'd taken that route.  Instead, six years later, I'm still fighting for the benefits that I'm legally entitled to, that doctors say I am entitled to, from a judge who claims the doctors said no such thing, and who, by now, has cost the taxpayers more for repeated unnecessary appeals than I'll get when I finally get the check.

Wednesday, June 28, 2006

Hallelujah!

This afternoon, I had a chance to appeal the fees/fines for the end results of that false police report getting me thrown out of my house last fall.

I felt dreadful (and apparently looked worse), so I took a friend with aspirations of being a lawyer to do my talking.  He made it clear that I had done everything I could to get the house cleaned, but the people who were hired to do the work didn't do what they were paid for; I was defrauded left and right, yet after paying all this money for "cleaning", now they want to fine me for not cleaning, which just isn't fair.

I spoke up only to confirm that the police were aware that this was a false police report while they were still here that day; the person who made the report had all sorts of ridiculous excuses for how she interpreted "call me" to mean "call police".  The police couldn't figure out how any rational person could make that mistake and asked if she was a kook (their word).  No, I don't know whether they filed any charges against her for false police report, or if they decided it was excusable stupidity.

We did manage to get the fees/fines reduced substantially, but someone's still going to have to pay $300.  We're debating whether it will be me, or whether it's worth the hassle of Small Claims Court to teach her a lesson about taking responsibility for your mistakes.

 

Friday, June 23, 2006

CFS on the Radio

Radio Show coming up this Sunday nite.

HealthRadioNetwork.com to listen live with Robin Barbero and her guest
Pat Gurnick, CLC,Psychotherapist, on 'Chronic Fatigue & Fibromyalgia' .
Pat will be providing many resources and discussing the new findings with
the virus and the chronic fatigue gene. She is a 'survivor' of these
illnesses herself, and will also address her 'experience, strength, and hope'.

9-10PM eastern Sunday, June 25th.

Live call in toll free  866 473 TALK during the show

To listen click on the listen live button on the
internet  HealthRadioNetwork.com

If you can not listen live, you can download a media player on
Windowsmediaplayer.com for free.

-----------------------------
Pat Gurnick, CLC
Psychotherapist
Certified Lifestyle Counselor
Director of CEFCA Website Support
www.caringcounselor.com 

             

Tuesday, June 6, 2006

IT WORKED!!!
A week or so after we posted the Request for Congressional Action to the first website, CDC changed their website and now includes info on the physical origins of CFS and for the first time since 1988 acknowledges that there is such a thing as Myalgic Encephalomyelitis.

Wednesday, May 31, 2006

CAUSE OF CFS IDENTIFIED!!!!

U.S. Newswire

Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue
Syndrome, Multiple Sclerosis and Epilepsy

5/31/2006 12:00:00 PM

To: National Desk

Contact: Gail Kansky of the National CFIDS Foundation, 781-449-3535 or
gailronda@aol.com

NEEDHAM, Mass., May 31 /U.S. Newswire/ -- Recent independent scientific
research funded by the National CFIDS Foundation, Inc. (NCF) of Needham, MA
provided preliminary confirmation of a new virus identified in patients with
Chronic Fatigue Syndrome. The Foundation's medical research dovetails with that
completed to date by Cryptic Afflictions, LLC (1), a private company.

Dr. Steven J. Robbins, virologist and Chief Executive Officer of Cryptic
Afflictions, LLC has discovered a major neuropathogen identified as an RNA
virus designated as Cryptovirus. Substantial clinical and molecular evidence
indicates that this virus is involved in the development of neurological
disorders that include Chronic Fatigue Syndrome (CFS), also known as Myalgic
Encephalomyelitis (M.E.) by the World Health Organization, Multiple Sclerosis
(M.S.) and Idiopathic Epilepsy of unknown cause.

According to the company, "This previously undetected virus appears to be of
significant importance to researchers looking for a cure to Multiple Sclerosis
and many other neurological illnesses. Antibodies to the newly discovered virus
were found in the cerebrospinal fluid and blood of over 90 percent of the
patients tested with Multiple Sclerosis. It is believed that this newly
discovered virus may prove to be responsible for a host of neurological
disorders. Tests are currently being prepared for tissue samples of lesions
within the brains of patients with Multiple Sclerosis. This will be the final
round of tests before approaching the FDA for approval of the diagnostic
tests."

Dr. Robbins' evidence includes the presence of virus-specific antibodies in the
serum and cerebrospinal fluid of patients suffering from these disorders, the
ability of the virus to cause virtually identical disease in
experimentally-infected animals, and nucleotide sequence data that indicates
that the virus is pandemic and represents a single virus species much like
measles.

A recently published medical journal article suggests that Cryptovirus is most
similiar to Parainfluenza Virus-5, a rubulavirus in the paramyxovirus family.
Another rubulavirus related to Cryptovirus and Parainfluenza Virus-5, that has
gained national attention for its large outbreak, is the mumps virus.
Rubulavirus infections have been associated with encephalitis, meningitis,
orchitis, inflammation of the testicles or ovaries, spontaneous abortion, and
deafness.

The NCF has conducted its own preliminary research into the potential role of
Cryptovirus and Parainfluenza Virus-5 in Chronic Fatigue Syndrome. Professor
Alan Cocchetto, Medical Director for the Foundation stated, "Our own funded
research first confirmed the lack of a vital protein, known as Stat-1, in the
blood of patients with Chronic Fatigue Syndrome. Stat-1 plays an indispensable
role in immunity. Without this protein, patients are unable to effectively
fight viral and bacterial infections. Thus, the next logical question to be
answered was 'Could a virus be causing this Stat-1 depletion?' " Cocchetto
continued, "Parainfluenza Virus-5 is a virus that had to be seriously
considered as a possible piece of this medical puzzle because it directly
targets and destroys the Stat-1 protein." Gail Kansky, President of the NCF
stated, "Once we determined the status of Stat-1 in patient blood samples, we
knew that we had to look for possible evidence of Parainfluenza Virus-5
infection. It was during this phase of our own research that we actually
learned of Dr. Steven Robbins' discovery of Cryptovirus specific antibody
reactivity in patients with CFS." Dr. Robbins had tested fifty- six serum
specimens from patients who had been diagnosed with CFS along with eleven
matching cerebrospinal fluid samples obtained from physicians in Brisbane and
Southeast Queensland. Dr. Robbins had determined that 96 percent of the blood
samples and 91 percent of the spinal fluid samples tested positively for
Cryptovirus specific antibodies in these CFS patients.

The National CFIDS Foundation's own research began to dovetail with that of Dr.
Robbins. Scientists funded by the Foundation performed numerous tests for
Parainfluenza Virus-5 that included antibody as well as PCR specific probes.
Antibody testing provided some initial hints, however a PCR specific probe
picked up the infection in a former patient of David S. Bell, M.D. and Paul R.
Cheney, Ph.D., M.D., both considered well known specialists in the field of
Chronic Fatigue Syndrome. Kansky commented, "Though our funded research
continues in diagnostic testing, our findings have served to highlight the
important work of

Dr. Robbins and the role of Cryptovirus and Parainfluenza Virus-5 infection in
CFS."

NCF scientists utilized the NIH Genbank database to find the nucleotide
sequence for a specific viral protein of Cryptovirus that matched 100 percent
to the porcine (swine) strain of Parainfluenza Virus-5 known as the SER strain.
In 1994, scientists at Bayer AG in Germany first isolated the SER strain from
swine with Porcine Reproductive and Respiratory Syndrome. "This may represent a
zoonotic process since zoonotic viruses are those that can be transmitted
between animals and people" stated Cocchetto. Kansky commented, "Here we have
what appears to be the same viral strain of Parainfluenza Virus-5 on two
continents and in two different populations, swine and humans. Given that the
NCF found Parainfluenza Virus-5 in one CFS patient in the United States
certainly raises the bar." The Foundation is currently funding further
research.

The National Institutes of Health (NIH) has several ongoing grants in the
Parainfluenza Virus-5 field. Currently, however, there is only one U.S.
scientist specifically funded for research on the SER strain of Parainfluenza
Virus-5 by the NIH.

---

(1) "Limina Biotechnologies, Inc. is a recently formed subsidiary of Global
Medical Technologies, Inc. that was established for the purpose of merging
Cryptic Afflictions LLC and Global Medical Technologies, Inc. It is the intent
of management to spin off this newly formed corporation once the merger is
completed so Limina can raise capital through its own IPO," according to the
company's website, http://www.globalmedicaltech.com.

------

Founded in 1997, the National CFIDS Foundation has grown to become the largest,
all-volunteer patient organization of its type in the United States. The
Foundation has no paid employees and is funded solely by individual donations
for the primary purpose to fund medical research into the cause and treatment
and/or cure of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS).

http://www.usnewswire.com/

-0-

/© 2006 U.S. Newswire 202-347-2770/

Thursday, May 11, 2006

Grrrrrr

All week, guys from the City Inspector have been knocking so quietly I barely hear them and leaving before I could get to the door.  Brian offered to call them for me, to find out what's up, and to say things they might not believe coming from me.

It seems that someone called in a complaint that my house is a mess again and needs to be condemned again.  Since no one has been inside the house in over a month, Brian made it clear to the inspector that whoever made this complaint is lying, because whoever it is can have no knowledge of the current conditions inside.

Thanks to Brian, the inspector's file now has a note that I am being harassed, and that further complaints from this person should be disregarded, because she will never be allowed back inside the house to know what she's talking about.

That, hopefully, takes care of that.  Permanently.

Wednesday, May 10, 2006

Please Circulate!

PERMISSION TO RE-POST -- PERMISSION TO FORWARD

As part of CFS Awareness Day, we are asking people to e-mail/fax these PSAs to their local radio and TV stations.  Don't worry about whether someone else in your area has already done so; better that they get multiple copies than none at all. 

Perhaps we can finally get the necessary research done.  CDC had a cure for SARS in 8 days -- after 19 years, I'm still waiting!

PUBLIC SERVICE ANNOUNCEMENTS

0:15

Chronic Fatigue Syndrome; it's not what you think it is. This disabling neurological disease usually starts with a virus, but the symptoms--severe, rapid exhaustion of motor, sensory and cognitive abilities, and immune dysfunction--never go away. Learn more at CFSfacts.org.

 

0:30

Chronic Fatigue Syndrome; it's not what you think it is. This devastating neurological disease usually starts with a virus, but soon rapid loss of physical stamina, exhaustion of motor, sensory, and cognitive abilities, and immune dysfunction set in. Advanced symptoms can include viral damage to the heart and brain. Please join a million patients in petitioning Congress for more research funding for this contagious, disabling illness by downloading the petition from CFSfacts.org.

 

0:60

Chronic Fatigue Syndrome; it's not what you think it is. This serious neurological disease usually starts with a severe virus and can leave patients permanently bedridden. Research shows abnormalities in the central nervous system, resulting in loss of physical stamina, disruption of autonomic functions, immune dysfunction, memory loss, and difficulty with any task requiring brainpower. 100% of disabled patients in two research studies had viral damage to their hearts. Unfortunately, funding for research remains extremely low, and a million patients are forced to petition Congress for more funding for more research into this contagious, disabling illness. Please join us in getting the respect -- and the cure -- that we need. Learn more about Chronic Fatigue Syndrome and download our petition to Congress from www.CFSfacts.org. That's CFSfacts.org, where we give you the facts and dispel the myths

 

CFS AWARENESS DAY IS MAY 12 -- PSAs CAN RUN YEAR-ROUND