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Showing posts with label Dr. Nancy Klimas. Show all posts
Showing posts with label Dr. Nancy Klimas. Show all posts

Thursday, January 14, 2010

#49~ Wake UP Kaiser, HMO's, AMA & medical schools



I am writing today's post because I just found out about something that
in light of recent medical news, events over the last 4 months, have been such a game-changer to 4 million Americans, and the 28 million worldwide and today I find out that KPMG aka Kaiser Permanente Medical  Group an HMO throught-out the USA is NOW in some of its facilities NOT going to be replacing the Rheumatologist/Infectious Disease MD's and is referring their ME/CFS patient back to their Primary Care MD's.

What the Heck is this ??? Going backwards in Medical Care?
SHAME on you Kaiser...   Henry J. would be ashamed of YOU..

NOW when ME/CFS patients are mostly likely being shown to have
a Retrovirus, you are dumping them  back on their GPs ???



Hope you have MANY hours of CME credits planned for them to
(continued medical education) take to come UP to speed and
Suddenly turned INTO RetroVirology Specialists ??
Wouldn't it be MORE Practical to have at least ONE Virology MD
on your Staff? Who treats your AIDS patients now ??? 

That's a Retrovirus also, in case you forgot...???

..as recently come to light, to the "public," but LONG-KNOWN by
the long suffering patients, the regular MDs that most of us have
learned to TRUST over the years have NEVER BEEN Educated about
ME/CFS and the Professors that try to educate the Medical Groups
around the country/world have been threatened with Termination and
others already have been.
Even future medical students have testified that they KNOW ME/CFS
is REAL yet they fear they will  not be properly educated about it and
will be threatened if they even discuss it as others in medical schools have been.

This info has been documented  and presented to the CFSAC meeting
(under the HHS.gov) webcast LIVE and it has been backed up by other testimonies and the experiences of many patients because " your average Joe MD" has NOT been taught about this disease
and has been advised to pigeon-hole everyone with a "Psych label" and
told that it was "all in your head" when there IS actual clinical criteria
(SEE Dr Donnica's article below) and forms of testing that can PROVE
that this illness is REAL and yet Kaiser in this 21st Century, who pays for these TV commercials about how much they care about you ONLY cares about their bottom line..
Another example of a Health  Maintenance Org. that is ONLY
trying to maintain THEIR Financial health..not your physical/emotional

health ~ NOT yours...



"Chronic Fatigue Syndrome (CFS) has received relatively little consideration since it was first described in 1988,  but the recent finding published in the prestigious journal Science showing an association between CFS and a retrovirus, XMRV has focused media and medical attention on this serious, devastating and debilitating neuro-immune condition.

While there are some people with CFS (PWC) who are able to continue
working and doing some of their activities of daily living, there are
many at the opposite end of the spectrum who are bed-ridden,
completely disabled, and can’t even get to the bathroom without assistance. While CFS doesn’t kill many people, it does take away their lives and, in many cases, their livelihood."


Excuse me, but because of the PTSD and many YEARS of Mental abuse 
perpetrated by the Medical Profession upon these victimized patients
trying to honestly get HELP and Medical CARE from their Dr's they are "suppose to  be able" to TRUST.. that have sold them down the river, caused their families YEARS of unnecessary mental and financial abuse, bankrupted families because of the Court Costs for parents of children with  ME/CFS having to PROVE that they are 
"fit parents" cuz the kids are too sick to attend school and the DSW
shows up at their door.... and MANY other abuses over the years..
I am sorry to say that there are MANY that havd died because of 
ME/CFS, just as we have had soldiers commit suicide from the PTSD from the sites of war...Well, many patients with ME/CFS have PTSD from
the years of Medical abuse and  I am sad to say that Suicide is a Sad but 
Often END to the Abuse and Pain.
Disagreements over how the condition is dealt with by health care systems has resulted in an expensive and prolonged conflict and the EARLYDeath of many patients...

(Dr. Donnica 12/02/2009 article)

KPMG this current plan on non-action on your behalf I fear is a step backwards for the medical profession and will cause patients to trust their Dr's even LESS... and show that YOU are NOT staying "current" with what is already known WorldWide and ignored by you like an
ostrich sticking your head in the ground to play ignorant & play Dumb ?
If you are Ignorant of This Game changing News.. Please avail yourself of the MANY places the info has been posted.. maybe
even watch the CFSAC Meeting ?May I suggest you WATCH BOTH Days?

Many ME/CFS patients would LOVE to be able to GO back to work  or work from home online and Have a Life again and even be able to Pay Taxes...Why are you NOT Helping this country by Helping it's citizens have better health care so we can work?

And SHAME on the AMA and whoever is  in charge of the Rules governing the Medical Education and Schools in thisCountry... You are definitely complicit in this cover-up and "intentional"lack of education and thus trauma you are and have been causing the millions of ME/CFS patients that you have been shoveling over to the Psych Dept when they have a VERY Real Biological Disease that is NOT "all in their head."

YOUR illusion that this will "go away" and that we will NOT stand UP to you and demand to be treated like HUMAN and not the mice that passed this retrovirus on proves it is all in YOUR Head... WAKE UP..

In fact, the Blood Supply of the Country and World needs to be screened just as it was for HIV and the Dr's on the  CFSAC Committee have even passed that VERY same Recommendation on to the Secretary of the HHS so we will NOT have another "an the band played on" situation like we did during the 1980's with HIV being passed on to many people
having transfusions...not to forget all of the organ and tissue transplants.

WAKE UP KAISER ~ WAKE UP Citizens
~ WAKE UP HHS Sec. Sebelius~
WAKE UP CDC & FDA~ WAKE UP MD's around the world~
WAKE UP Minister's of Health~

Ignorance we HAVE a Cure for.. but Stupidity we do NOT...
If you choose to NOT educate and teach about a subject, WHY should we TRUST you? Trust needs to be EARNED. You are currently Losing it....
SHOW us you have the Guts to Be Honorable and Live up to your
Hippocratic oath of "Do NO Harm."






I am asking everyone that is reading this to either write to their Congressional Reps, Ministers of Health, HMO's, Letters to their
Editor, anyone they can think of and MORE to bring this subject to the forefront.

How many poor patients of catastrophe's are going to receive transfusions w/o knowing if the blood they receive has  XMRV in it ?? that they might develop one of the MANY Neuro-immune diseases 
or Cancers that  is linked to..

Why do you think Michael Jackson had to HIDE the fact that he had 
Lupus and Vitiligo... because the  medical world had NOT done their 
part to learn and educate themselves and the public so that this GREAT
Star did not have to live the Life of a Recluse as do many of the patients
with other neuro-immune diseases.
WE understand the problems he HAD sleeping because we have them 
ALSO. We understand the Stigma the CDC and medical profession
had imposed on these patients...
Not to forget the PTSD they have inflicted on them by abusing their
Trust and sending them to Psych....SHAME on you.....
You have made their illness WORSE by your action/OR "Lack thereof" and you HAVE caused HARM.



Why wait for Big Pharma to invent a  med to treat EACH and every illness Choose to Back the Researchers that  are Helping to find the Cause and Cure these diseases... such as in the USA...  
the WPI in Reno, NV.

WRITE THOSE LETTERS...  Give to the Researchers...
Speak UP and Question.     It's YOUR Life.. Keep it ♥

Thursday, November 26, 2009

#41~ Happy Thanksgiving USA & laws, clinics & MORE


My, my, this has been such a busy 2 weeks that I 
have been without my MAIN computer and it feels 
like I'm been missing my right arm...and NO I'm not 
left-handed. I have had a hard time even keeping up
with all of the news & posts on this 7 tear old laptop
that has been working it's heart out for me to keep 
me informed, but It has been working at the speed 
of ME/CFS and thus even has made what I thought
took me a long time to do, even longer...Hence
I am behind in blog posting. OK, I apologize
and will NEVER catch up.. but that's the LIFE
of ME/CFS even with an old computer that has it.

May I First & foremost WISH "Happy Thanksgiving"
to all of the readers in the USA, and we SURE know
what we HAVE to give thanks for THIS year... 
Even tho we don't physically FEEL any better yet
our Spirits & Hearts have been LIFTED UP again
and we have HOPE that was for SO many years
missing....We FEEL again like we have a supportive 
"chosen online Family" that Understands us and 
does NOT Judge us. Just accepts us AS we Are..
We have in the last month cried together, rejoiced
together, and supported one another like I have 
not felt in MANY years... so I definitely KNOW
what I will be giving Thanks for Today....
ALL of you, ALL involved in  WPI, and ALL
involved in Supporting us...Bless you !!!
25 years is a LONG TIME to Feel Abandoned..
and that is what we have Felt...
esp those that are alone...those w/o families.
So CHEERS to the NEW "Chosen Families" that
now exist and we are one HUGE extended family
now...and forever.


Just a little news and some updates to those that 
might have missed it..
The XMRV/CFS Dr Oz Show WILL Air on Thursday
Dec 3rd on NBC, check your local channel for times.
Maybe someone can make this segment available
on youtube for those that miss it? I have not seen
Dr OZ on hulu.com...any other ideas?

ALSO, Dr Oz is NOW going to do a show on
Fibromyalgia... so HERE is the link to get YOUR
story told and as it is thought that XMRV might be 
at the root cause of that ALSO, be sure to let him 
know  if you started with a flu or anything that might
sould likje our ME/CFS soory as SO many of us have
BOTH, OK? Even if you can't attend he may choose
you to do a Skype interview with.. or at the least you
are Helping the Cause by helping us flood him with
the Numbers of us that have this also... So PLEASE
send your story in THIS weekend...OK? Thanx


There has been another families interesting story
that "may" prove of benefit to us...
Questioning if XMRV feeds on HIGH cholesterol 
in our systems? Has yours been checked lately?
Read the Hempel Story. 

 Many of us during this Holiday time when so 
many are going crazy with Holiday shopping..
WE are asking them to NOT "buy" us something
but Rather.. to donate for us to the WPI that is 
doing the Research to Help find us a CURE.
That can be done either directly on their 
Homepage via Paypal http://www.wpinstitute.org
Or if they belong to Facebook they can Donate
thru Andrea Whittemore's Cause CURE 4 ME

Also after the much appreciated part that
Dr Nancy Klimas played during the CFSAC meetings
and her recent NBC interview has decided to 
Open the Klimas Clinc doors !!!


The time has finally arrived!  Dr. Nancy Klimas 
will open the new Chronic Fatigue & Immune 
Disorders Research and Treatment Center
(Chronic Fatigue Center for short) in 

December.  Located in Kendall at 
8720 N. Kendall Drive, Suite 108, Miami,
FL 33176, the clinic will begin seeing patients
on Friday, December 4th.  Clinic days will be 
Mondays and Fridays for the near future.  
The clinic is a private fee-for service clinic, 
meaning that full payment will be requested 
at the time of service, and forms will be given
to you to submit to your own insurance 
provider.  Labs will be drawn at the clinic 
but will be billed directly through your 
insurance provider.  For more information, 
visit the web site http://www.cfsclinic.com
  If you have any questions or want
to make an appointment, email the clinic at 

info@cfsclinic  or call 305-595-4300.

The Chronic Fatigue Center is a private clinic, 

separate and apart from the CFS Clinic at the 
University of Miami, so everything at UM will
remain the same.



Here is the  only article I have seen from the
Cleveland Clinic Conference of researchers..
They are playing it VERY "close to the vest."

It's OFFICIALLY LAW Now...in the USA
You can NOT be Discriminated against
because of the results of a DNA test for 
employment and they are including the 
NO "Pre-existing Conditions" Clause in the 
Health Care reform Bill so Hopefully 
This will end all of this BS.

The law took Effect Nov. 20th 2009.
HERE it is.....

OK, time for some sleep here on this end...
almost 4am and a Holiday & food to fix...
Let me leave you with a song that has
unexpectedly worked it's way into my heart
and become my New Theme Song... 
I have a few others that you can listen to,
but this one has become "A Call to Arms"
for me.  May it serve us during this next leg
of our ME/CFS/XAND Campaign......

All Ratings & Comments are always Welcomed
on my Blog as well as my youtube page. 


*gentle HUGS* to you ALL.....


Saturday, October 24, 2009

#25~ Located another NPR interview obout XMRV

 October 16, 2009
IRA FLATOW, host:

 
This interview was conducted on the
"Friday Science Show" as part of NPR,
with Dr John Coffin of Tufts University.
I had heard something was going to be
broadcast but didn't know when..
and just located it.

As they allow it to be "embedded"
I thought I would share it with you,
and also give the link for those with
dialup that wanted to read the Text
of the interview or listen to it directly there.

for those with dialup:
NPR ~Science Friday ~Interview

Audio: [10 min 33 sec]

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