Translate to ...... with one click.


Dec.2014 LauraHillenbrand FaceTheNation
ME+Unbroken Interview HERE -

Dec 2014 ~ "NIH"P2P4ME"

NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
DraftReport HERE
Nov.2014- "Plague"-Published !!
VOA-PodcastAudioInterview HERE
Amazon USA Link HERE

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 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
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
  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."

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.....

Sunday, November 15, 2009

#40~ 2nd Chance 4 Dr. Oz w/Dr Mikovits & WPI news, Osler's Web, CDC

From WPI:

"A 'new' Dr. Oz show is being "taped"
November 20th. Dr. Mikovits had a
phone interview yesterday :)"

~HOLD Positive thoughts that THIS time
he HAS HEARD ALL of OUR emails & Tweets & FB notes...
I Will post when I hear about an "air date"
It is usually about 2 weeks later.

I heard him state that he tapes shows 2 days a week.
Reminds me of when I was young in Hollywood and
the "game shows" would do the same thing...
and record 2 -3 shows back to back in one day.
Saves on studio/staff costs..
***ALSO: Dr. OZ is ASKING for us to
email HIM Directly because of this new viral link
and  tell him OUR story and possibly
be  ON the SHOW!

Here's Your chance top have your Truth HEARD.

a note from Andrea on behalf of WPI:

We raised $14,000.00 this month. We couldn't have
done it without you :) thank you so much for your 
support , donations , advocacy , awareness 
and letter writing!!! WPI fans are awesome ! 
Together we can find a Cure 4 ME and XAND!!! 
If I don't answer a question it's ...usually because 
I don't know the answer. I am a patient too so 
I share in the same Hopes, Dreams , Fears and 
Questions you have . I will always do my best 
to answer what I can. 

Thank you so much for supporting 
the crucial work going on at WPI:)


Everyone PLEASE Remember that the 
X+ AND is all of the other illnesses that 
also can be included in the list to be tested
such as autism, FM, atypical MS, MCS, etc...
If there are "only" 28 Million around the World 
with ME/CFS if you add in FM and the rest of 
these... if these tests pan out ~ we HAVE a
TRUE Epidemic that the CDC "Let Happen"
PLUS just HOW many carriers in addition ?
"ALL the Nations" (NOT JUST USA)
Blood supplies need to be
screened for DEAD viruses !!! 

***add to that***
This week's smoking gun:
From: Osler's Web Blog--> see Link in Right column 

 While discussing the topic of lymphomas
and other cancers in his Tahoe cohort,
he mentioned Jerry Crum, who died of lymphoma
in 2008. WPI had been able to grow XMRV
from Crum's blood, frozen in 1984
during the first year of his illness.

"We were able to take serum frozen in 1984
at the time I asked for the CDC's help 
with this disorder” thaw it, and infect cells
[with XMRV] and that is very dramatic to me.
It's somewhat frightening, the doctor continued,
"that you can take blood that's been frozen for
twenty-five years and obtain active infective virion."

An aside, a parenthtical phrase setting the time frame;
Peterson didn't even have to mention it, but he did.
Jerry Crum, and by inference the other patients in
that outbreak, was fulminantly infected with XMRV
in 1984, the year Peterson had asked CDC for help. 

Had CDC actually helped when he asked in 1984, 
maybe it would have been the CDC growing XMRV 
out of that frozen blood, not the Nevadans, and 
maybe it would have happened a decade or two ago.

Chew on THAT for a WHILE and SEE why we ask
YOU to HELP US ~ Raise Research $$ for the 
Institute that bears HIS Name along with his original
Benefactors.. The Whittemore-Peterson Institute...
"They HAVE a dog in this race."
Or to be more polite.. a Daughter that also has this,
but their money only HELPED get the Ball Rolling...
We have a LOT MORE Research to DO, not to 
mention that they have already done ALL of THIS
without their building even having been buildt YET.

So Please keep doing those Searches if you have 
no money or way of raising any other funds..OK?
I have been doing my 5 searches a day.. 
First thing in the morning, then I know I'm done.
It's EASY and Quick and I can SEE the Amounts 
Growing already ...So PLEASE "Pass this ON"

They will need a LOT more Research staff 
and Dr's & nurses for when they have the 
buiding finally Opened.. IMAGINE what they
can DO then ???

We can HELP NOW by simply being 
Searching Fools for WPI and 
instead of "Paying it forward"....
We will be "Searching it Forward" to help
EVERYONE as SOON as Possible..

THINK of Creative eways to get your 
family & friends to use this Search for YOU
"only 5 times a day" is NOT a LOT to ask 
when it is FREE ...Be Excited & Energetic LOL
and let then know HOW excited you ARE and '
how Easily THEY can Help Daily...

Bless you ALL and  **GO TEAM GO**


For those working on their Letters to Congress:


If you want to know if your representatives
are on a health committee, that information
is here:


The U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Saturday, November 14, 2009

#39~ Raise Research $$ while you are Searching

In an attempt to quickly 
"Kick-Start" this Fund Raising Campaign 
for the Whittemore-Peterson Institute
that is a "bottom UP" Grass Roots WORLDWIDE
organizing machine who's TIME HAS COME...

Here is a Simple way we can get started
to raise some money WHILE we are
doing our research to write our letters
to send out to our local & federally
elected officials, newspapers, etc.

It is "SO simple" in fact it was posted 
on Facebook by a number of "Great Thinkers"
that think alike and have started the rest 
of us using it already...

Simply "Search" AWAY and pass it on to 
EVERYONE and Repeat OFTEN ;-)

Each search will earn $.02 for the WPInstitute.
If all the 1,190 fans of WPInstitue on Facebook
did 5 searches a day for a year, 

it would earn $43,435.

If all of the 4 million PWC in the USA 

did it = a lot MORE.
If all of the 28 million in the World 

did it = a GINORMOUS Amount.

Who the heck said 
"Your 2 cents wasn't worth much?"
HERE it is worth a LOT 
and it will ADD up FAST if we all do it 
together and ask  others to 
"Simply Search" when they think of us..
It will cost them NOTHING to Help us
in this way.. 
Suggest that they Bookmark/Favorite 
this url / Link and go there Often...

Please share with your Friends & Family.
Ask them to "simply SEARCH" as 

part of their Holiday gift to you.
They don't have to wrap it, use any 
gas to go get it, or pay any postage
to send it to you..

Go here to participate:

Happy Searching and you can 
Literally add up the Good you are
doing Daily with each search.. 

So don't think you don't have any $$$
to donate for Research... if you can read this
than you CAN Search and Help us Raise
Research money for the Whittemore
Peterson Institute that helped to bring us
and ME/CFS into the current World Spotlight
and there we WILL stay until they can do 
enough Research to help us find a CURE
so our "28 million Voices 4 a CURE" 
will NO longer need to be quiet whispers 
and we will be helped, 

so "Go Forth and "Search."

Friday, November 13, 2009

#38~ "Call to Arms" WPI~Pres. & NYT article

Hail WPI fans :-) we HAVE "news" from
one of our Chiefs.. sent to us Nov 12th.

...and with this NEWS comes OUR
"Marching Orders.."

For those in the U.K. you have the
addresses & letter that I posted in
a previous blog post.

Enough blathering.... READ Annette's Letter
and then read my notes Below...
Then......***GO TEAM GO***

Since we published the XMRV study the WPI
has been extremely busy establishing new 
collaborations and moving the work forward. 
This is truly a world changing event for the 
field of neuro immune diseases and patients 
who suffer from them. 

First I want to thank you for all of your kind

words of support and very generous donations. 
They give everyone at the WPI the added strength
and motivation to continue full speed ahead. 

Secondly, let me explain some of the things 
we have doing to since the article was published.
We have been working for you. We have been in 
Washington, DC explaining the significance of 
these findings to our representatives of the 
state of Nevada and our country. 
We have spoken to representatives of the 
institutes' of health encouraging them to 
dedicate funding to XMRV research. 
Patient studies must be done outside of the
NIH to bring answers that will end this 
cycle of disease.

We are overwhelmed but very excited 

about the possibilities this finding will 
bring for our loved ones. 

The recent conference at the Cleveland Clinic
of 75 Scientists included Dr. Mikovits, 
Dr. Vincent Lombardi and many others who
understand the role of retoviruses in 
human disease. They were able to develop
key relationships and collaborations in support 
of research of XMRV. 

We are confident that good science will 
ultimately lead to the answers. But we need you.
We need every person suffering from this
debilitating disorder to help by writing your 
congressmen and senators and asking for 
research funding for the WPI to continue 
its studies of XMRV in CFS and other 
neuro immune diseases. 
We must have funding to establish mechanisms
of disease and treatments for patients. 
Clinical research centers must be created 
to establish effective treatment protocols 
as quickly as possible.

There's so much more to come. 

Thank you for all your love and support,

Annette Whittemore
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
775-348-2335 Phone
775-348-2350 Fax


Here is another more recent article
about the Whittemore's and the
History of the founding of the Institute...
in the  New York Times
I have provided you with many
links to info, to the CFSAC meetings,
and places from which to acquire
statistics to add to your letters.

Remember to NOT make them whiney
letters, but statements of FACT about
How long YOU have been sick,
Were you a young child then or a 
working-tax-paying citizen doing what?

How much your Dr's have NOT been
educated about treating this illness,
the hardships it has placed on your 
family, the loss of your ability to 
work and be a Productive TAX-paying
citizen that you WISH to BE, but how 
you NEED to be well enough to do so.

How you have knowledge of Millions
in the USA, U.K., Europe, Australia,
New Zealand because we are 
ALL in Contact.... there are 28 Million
of us Worldwide.

For those in the USA:
Here is your link to find out who is
your Federal Congressional Rep/Senator:

Refer them to the Oct CFSAC meetings
and testimonies given there by not ONLY
the Dr's & researchers, but also by all
of the PWC's and their Families.

Make reference to the 
Obama/Biden Transition letter that
was sent to the Administration-to -be 
back in Jan. but was written in Dec. 
after the Election.

Write as many "Drafts" as you need to..
Collaborate with other FB or PWC's friends.
Try to make your bullet points in Time Order
culminating with the Report in early Oct
published in Science thanks to the 2 yrs of 
work by WPI, after waiting 25 yrs for other
Governmental agencies to Help us for not.
...and then the Crescendo of the CFSAC
meetings and how this ALL ties in with 
Health Care Reform. NO Dr's can Help us
if the PROPER Research has NOT been done.

Try to be MORE Positive about How the 
HELP for Research NEEDS to be "Targeted
to Places such as WPI" that have a PROVEN 
Record of producing RESULTS, instead of 
places that  have floundered for years.
Time = $ = HEALTH = Life = Citizens = work = taxes
4 Million sick = loss of taxes & family stress. 

Ask them to HELP US ~ Help the Country..
Help us get Well and we will work and pay taxes.
Use your own wording, but I think you get 
my point.. work for a Win/Win... 
Give them a REASON To Help Us...
Use my list of Famous People to show
that all strata of the society get  this.
Use my list of articles and websites
to gather info...then edit it for concise
bullet points.

If you have NO idea what to write
please use the previous posted 
letter "as a guide" and change the 
names & figures as needed to make
it fit the USA or your location.

If you are as FB user, brainstorm on a 
Discussion Page Topic if you wish on

the WPI FB page. Otherwise, gather
together with YOUR "local" ME/CFS
group, use your local online Forum for
CFS, use Twitter, Use My Space, 
Gather ALL of your thoughts...

1) Send letters IN...
2) Follow them up after with a phone call.
3) Follow that up with an email.

Maybe some of us can write a 
Main "Petition Letter" and we can
send you the text, you can print it out
and get ALL of YOUR Friends & Family
to Sign it and, make a copy of it, to keep
as PROOF, and IF Possible DELIVER  
the Signed Petitions to the Local Office 
of your Rep/Senator when they 1st get home
for the Holiday break.

Co-ordinate with your local groups and 
NOTIFY your local PRESS both TV & Radio.
Send a copy of your letter/Petition to your
local newspaper if you still have one.
Send a copy to your Largest Regional
Newspaper. Write Letters to the Editor.
Keep the Ideas coming and post them
for others to brainstorm about.

These are just my First few thoughts
off the "Top of my Head" ,as they say...
No one has urged me to say these things,
the words are all my own...
"Thoughts From the 4am Vault" ;-)

Post Ideas to Annette on the FB page
if you have any questions about anything
you feel you might need Permission to do.
That was Everyone can SEE the answer.
We ARE in contact with each other NOW..
Let's KEEP this ball rolling and make it 
HUGE like that ball in Raider's of the Lost Ark.
We are the Raiders now and  WPI is our ARK
that is trying to SAVE US...
May History Repeat itself...
NOAH, are you Listening???

As one of the old lines from one of my 
fav late night shows use to say.....
"Talk amongst yourselves." ;-)
Like my screen name says....
NOW is the TIME for 

Thursday, November 12, 2009

#37~ Mixed news about HEB lab-Ampligen

Many of us have been hearing about previous
ME/CFS patients on trials of Ampligen and some
have done incredibly well for long periods of time
after being on it for about 18 months and others
felt no improvement at all.

Recently, Hemispherix Labs (AMEX:HEB)
posted some news about new trials they
were about to start and at the same time
we have news about a class action suit
being brought against them for withholding
info about request for info that was not complete
that needed to be submitted to the FDA.

I will present both sets of info for you here to read.

Nov 10, 2009 
Dyer & Berens LLP ( today
announced that it has filed a class action lawsuit
in the United States District Court for the Eastern
District of Pennsylvania, Civil Action No. 09-cv-5262,
on behalf of all purchasers of the securities of 
Hemispherx Biopharma, Inc. 
("Hemispherx" or the "Company") (AMEX: HEB)
between February 18, 2009 and October 30, 2009 
(the "Class Period"), for violations of the federal
Securities Exchange Act of 1934.

The complaint alleges that, during the Class Period,
defendants misled investors regarding the status
of Hemispherx's New Drug Application ("NDA") 
for Ampligen with the U.S. Food and Drug 
Administration ("FDA"). Specifically, defendants 
failed to disclose and misrepresented the fact 
that the FDA had requested several reports 
from the Company before the NDA could even
be considered, thus delaying the possible 
approval of Ampligen by several months 
at a minimum. 

On November 2, 2009, when the Company 
belatedly disclosed this information, the per share
price of Hemispherx's common stock dropped
from $1.45 on the previous day to $1.13,
a drop of more than 20%. The next day,
one commenter characterized the November 2nd
Company "update" as essentially an admission
"that its prior public statements were
false and misleading."

Tuesday, November 2, 2009

Update from Hemispherx Biopharma 

(makers of Ampligen)

Hemispherx Biopharma Updates Chronic Fatigue 
Syndrome (CFS) Treatment and Commercial 
Application Programs

-- Hemispherx Biopharma, Inc. (NYSE Amex:HEB)
(the "Company"), announced a two-prong CFS
clinical mission for November and December 2009.

The Company plans to widen its ongoing clinical
programs in CFS by accelerating collaborations
with a consortium of researchers who have just
discovered a retroviral link to
Chronic Fatigue Syndrome. A clinically validated
test to detect retrovirus antibodies in patients
plasma is also currently under development
(please see US National Institutes of Health ).

With the consortium of researchers at the
Whittemore Peterson Institute, the Company is
also now evaluating the defect in
immunosurveillance in specific subsets of
CFS patients in a clinical study entitled
"Therapeutic Activation of NK lymphocytes to
Alleviate Chronic Fatigue Syndrome."
These immune defects may be due
to the previously undetected retrovirus.
The Company also plans to complete all 
outstanding queries from the FDA regarding 
its New Drug Application (NDA) for Ampligen(R),
an experimental therapeutic, 
during November and December, 2009.

On May 26, 2009, the Company announced a delay
on the Ampligen NDA which, at the time, had a
PDUFA date of May 25, 2009. As noted in the
10-Q and 10-K filings at the time, the FDA did 
not request "additional information" from the 
Company at that time. However, several 
outstanding NDA items, requiring Hemispherx
responses, existed at the time of the FDA delay
as noted in the August 8, 2009, 10Q filing.
Between March 9, 2009 and September 15, 2009,
the Company issued six (6) new reports to the
Agency spanning various subjects including
a) clinical safety assessments,
b) specialized pre-clinical toxicology reports, and
c) abbreviated chemistry and manufacturing
control reports.
The Company believes that these reports may
fully retire all Agency queries in these
particular areas.

The Company also plans to submit four (4)
additional reports on interrelated topics in
November and December, 2009, which will
include pharmacokinetic analyses in multiple
lower animal species (primates, rodents, etc.)
("the Lovelace Laboratory Studies") and final
validation reports of certain manufacturing
procedures conducted at an independent facility,
Hollister-Stier Laboratories in Spokane, WA.
Some of these reports were recently cited in and the
Science Business Exchange (October 15, 2009).

Information contained in this news release other
than historical information, should be considered 
forward-looking and is subject to various risk factors
and uncertainties.
The Company disclaims, however, any intent
or obligation to update these forward-looking 
statements. Clinical trials for other potential 
indications of the approved biologic 
Alferon N Injection® do not imply that the product
will ever be specifically approved commercially for
these other treatment indications;  
Similarly, the completion of NDA filing process
with Ampligen® does not imply that the product
will ever be approved commercially. 
"partial press release" reprinted from:
Hemispherix Biopharma website 

Personally as an investor that HAD owned HEB
during the time mentioned in the class action suit
I agree that HEB was NOT forth-coming with the
actual facts of the matter...However, as I was NOT
in for the "long haul" but the trade>had let the stock
"pop up">sold my holdings>made my profit, and
was a Happy Camper. I will NOT be participating
in the class action, however I had a feeling back 
then when I was reading their website and saw 
some weird changes being made that something 
was a bit "fishy" as they say...

Unfortunatley, in this day and age, whether you
are a patient or investor
the Same RULE applies:

"Caveat Emptor"

Wednesday, November 11, 2009

#36~ Today- Cleveland Researchers Mtg re:XMRV

Send all of your Positive energies today
to Cleveland for the researchers working
and brainstorming on XMRV, OK?

Here are two articles covering today's

Cleveland Clinic on trial of XMRV

also another post from NPR
about the same issue:

NPR: Tues check-up XMRV

It will be interesting to see how of this
sorts out... I have been trying to figure
out how I and others could have contracted
XMRV and we have been discussing it..
As most of us know our "Triggering Event"
which is like saying we know when we
switched from HIV to AIDS, but when in
the heck did we get XMRV?

I was not breast-fed, I have never received
blood, and my mom and I BOTH always
have had 2 speeds.. Dead STOP and
"full speed ahead." My mom died of a
Lymphoma. I wonder if she had XMRV
many years before I was born?

That makes me wonder exactly HOW
many carriers there ARE actually?
Maybe most of our parents have
passed it on to us and that is why
we now have ME/CFS/FM/MCS/Lupus/Autism
..just a thought...that makes me go  Hummm.

Thanks to a FB Advocate for
creating a Letter for UK & others to use...
Just either use Google Translate
and send to your local Med. Authorities
or whom you feel needs to receive it.

Letter below: She has given permission
for any of you that feel so moved to
adapt it to your needs and USE it...OK?

Implications to the UK of new human
gammaretrovirus XMRV

You may be aware that a group of
researchers in the US (from the Whittemore
Peterson Institute, the University of Nevada,
the National Institute of Cancer and
the Cleveland Clinic) have identified a new
link to ME/CFS of a human gammaretrovirus
called xenotropic murine leukaemia
virus-like virus (XMRV).

This retrovirus has been identified in
over 95% of tissue samples from 101
sufferers of myalgic encephalomyelitis
(ME – or CFS or CFIDS as it is known in the US)
and 3.7% of 218 non-sufferers. This could
mean that, in addition to the estimated
250k ME sufferers in the UK, there could be
more than 2 million carriers who
"do not know" that they have the retrovirus,
and can be passing it on to others,

let alone into the Nations' blood supply.
Note that XMRV has also been implicated
in up to 25% of prostate cancer cases,
in fibromyalgia and also in autism,
atypical MS, and other illnesses.

In the same way that HIV can give rise
to AIDS, XMRV is now being said to give rise
to X-and: x-associated neuroimmune disease.
Hopefully, this will replace the multiple and
confusing terms ME, CFS, CFIDS, etc.,
once and for all.

Both the Whittemore Peterson Institute
in the US and Dr Jonathon Kerr in the UK
(who have researched gene expression
mutations in ME) have been awarded jointly
a $1.6m grant to research these
findings further.

In the light of these remarkable findings,
I wish to know the following.

1. Whether the government is prepared
to make ME a "notifiable illness" for the
purposes of protecting blood supplies
in this country. I note that both
The ME Association and Invest in ME have
written to the CMO, Sir Liam Donaldson,
on this point.

2. What plans the government has to
replicate and validate these findings.

3. What plans the government has to
provide funding for biomedical research
into the causes, transmission and treatment
of ME and other XMRV related illnesses.

4. What plans the government has for
testing for XMRV via the NHS and for
supporting those who are positive, specifically
in terms of medical treatment and
symptom management.

5. What plans the government has to
educate the UK medical profession and other
relevant departments and agencies
(e.g. the Department for Work and Pensions)
about the retrovirus and associated illnesses,
as well as other affected parties
(such as insurance companies) and
the public at large.

I note that there WAS a meeting of the
US Chronic ~Fatigue Syndrome Advisory
Committee at the National Institutes of Health
in Washington DC on Thursday 29th and
Friday 30th October and hope that the UK
government will be aware of its findings
and recommendations in this context.

Yours sincerely,

INsert your countries health agencies here:

U.K.~Search for your local MP here -

Labour party - Secretary of State for Health
- Andy Burnham -

Conservative party shadow health minister
- Andrew Lansley -

Liberal Democrat shadow health minister -
Norman Lamb -
(also has a Facebook page)

Tuesday, November 10, 2009

#35~ Remembrance + XMRV, WPI, MECFS, Survivors

Wow, I am beginning to catch the feeling
that many others are as Upset as I am
altho I am "trying" to "set my priorities"
for Getting Better FIRST and then we'll
have the energy to focus on Justice LATER.

This week in Canada we have
Remembrance Day
In the USA Wed. is Veteran's Day.
Although we have "not yet" established
a "specific day" to Rememebr ALL of those
Who have fought this Same ME/CFS battle
with us, and "gone" before us, too soon
their time on this earth ended because of
the abuse, & neglect to which we all ALL
been subject. I would like to take this
Remembrance Day Week for us to "Pause"
and Remember THEM at this Important
time in the Historic Time-line of MECFS..
and let their memory serve to buoy us UP
and give us even MORE reason to "carry on"
and help "28 Million Voices 4 a CURE" until
it is "no longer needed." So, in their honor,
I Dedicate this  tune:

For those who have gone before us:

Here is a Memorial list that another
MECFS Advocate has been compiling~

To change to a cheerie topic~
Here are some Recent new TV videos
Nevada Newsmakers videos
be SURE to play BOTH parts, OK?
I KNOW it won't happen tomorrow...
but the news here makes me even a little
more excited than I was yesterday...

Second, here is an article that will
speak to ALL of our souls called
"Where was the CDC?"
The Hilarious part IS that This was written
BEFORE the CFSAC meetings had started.
So they didn't even HEAR how BOTH
the CDC & Reeves got taken out behind
the woodshed and..  *#@%+$#^
as they have been doing to US for the
last 25 years..... Enjoy~ esp if you
have already watched the CFSAC
2 days' worth of testimonies.

I KNOW these NEXT 2 videos WILL BE
HARD to watch, but Please watch them
and as I did, I thought of all of those
other MECFS patients that could NOT take
any more and chose to exit this nightmare..
This person has chosen a "Creative Way"
to express their Pain and for THAT, I say
Congrats and KEEP expressing your pain !!!

In fact, I have a column here on this blog
for those that have MECFS and use ANY
Art Form.. I call it part of Art Therapy
cuz it's also what we "stuff" that kills us..
If you know "anyone" with an Invisible Illness
that blogs about their Creative Art PLEASE
let me know, so I can ADD them and
acknowledge them, OK?

Dead Funny? Xenophobia in MECFS

Part 1: Phone call for Mengele's twin

PLEASE watch all the WAY thru Part 2..
Part 2: Phone call for Mengele's twin

So as painful as it is for ALL of us to
experience THIS, let alone watch these
videos.. PLEASE do watch them and even
log in and give the Creator some STARS
"for the effort and creative way" they chose
to express their pain and let them KNOW'
that they have MANY that feel the pain ALSO
no matter what country we are in...
the TRUTH is the SAME ~ Each country has
it's own version of the Guilty..
We WILL "deal with them"
but, FIRST we need to get well..
then it will be "their turn."

I have been to Poland and the Death Camps
TWICE so I KNOW personally the similarity
of the Guilty. Those that Survived the camps
had ONE thing in common with us..
They "focused" on something Positive.

So make your list of the guilty, save your
copies of the Evidence, but FIRST and 
Foremost ~ DO what you/we need to
GET BETTER.. if they are still alive after
we get well, we can exact OUR Justice.

Thursday, November 5, 2009

#34~ WPI "temporarily agreed" VIP Dx to test for XMRV/XAND

For those that care to know or pass the info on
to someone that actually has a reason to have
this test done So the USA *ONLY*

Go to and the link
for the Press Release in ON their Homepage.

WPI has finally sent out THIS 
Press Release announcing this:

Viral Immune Pathology Diagnostics
Introduces New Test for XMRV Patients
and Clinicians
-Net proceeds from test dedicated 
to further WPI research-

RENO, Nev.–The Whittemore Peterson Institute
(WPI) has recently published a research study
revealing the prevalence of XMRV in patients
with Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome, ME/CFS or what has most
recently been called, X associated
neuro-immune disease, (XAND).

In response to an overwhelming request
for a diagnostic test for XMRV,
WPI has "temporarily agreed" to allow 
Viral Immune Pathology Diagnostics
(VIP Dx)
to begin offering the identical 
tests that have been extensively
validated using the same technology

developed by Drs. Lombardi and Mikovits and
their colleagues as reported in Science.

VIP Dx is a small state certified laboratory
in Reno, Nevada that was formed in
response to the September 11, 2001 crisis
which resulted in the cessation of
blood sample shipments between the
United States and Europe. Faced with the loss
of important lab tests impacting patients with
neuro-immune diseases, the Whittemore
family made the decision to support the
lab in Reno.

"Our family made it possible for the lab to
not only continue delivering diagnostic tests
to doctors, but also help the WPI bring
cutting edge biomarkers of disease to this
field of medicine, such as the tests for XMRV,"
said Annette Whittemore, Founder and
President of WPI. "Tests conducted for 
XMRV, and other tests that support 
the diagnostic process in this field, 
will support the continuation of vital 
work at WPI through our donation 
of all of our net proceeds."

XMRV test acceptance commenced at
VIP Dx this month. For more information
about the XMRV test kit,

Whittemore Peterson Institute

Wednesday, November 4, 2009

#33~ 10/09~CFSAC testimonies posted & MORE

Here's the page where the TEXT Pdf's of  
some of the Written Testimonies are starting
to show up...
Keep this page handy as I feel they will
ALL eventually show up HERE 
in pdf format..

Suggestion:  make yourself a CFSAC 
folder and add the pdf's there for 
future reference.. so we can "quote" 
them correctly, OK?

I would suggest you watch the video's
FIRST if you have that computer ability, 
mainly cuz you can catch all of the 
body language & verbal intonation with 
which the testimony was delivered, 
and then use the pdf to refer to 
the actual text.

At least it IS starting to show up for those
that don't have the video viewing capability...
Color me Happy about that ;-)

2009 CFSAC -Presentation testimonies

Also, because it at this time
we just had 5 of the members 

of the committee retire,
I thought it would be a good time to post
the "Charter" under which the CFSAC 
operates and the Rules it runs by and
Rules for replacing members/filling seats.

CFSAC Charter & Rules

Also, at this "Juncture in Time & our History"
I thought it would be interesting to
check out this link for yourself
and COPY the info in these links
so you can compare HOW they Change
over the next few years HOPEFULLY..

Below in this link are the MANY
Different Countries Definitions
of ME/CFS around the world.
Should be VERY Interesting as we
are Truly at a time where we will
be watching History being Made..

The many Definitions of ME/CFS

Our World will NOT be Flat for very
much longer. In the real span of time
altho politics colluded to conspire
quietly to keep us Invisible and
we have been treated with
by a blessed chosen few..
The News "heard 'round the world"
IS taking place..

Many of these Definitions MAY
be Changing soon.....

May those who keep track of these
events as they progress make SURE
you COPY the Important documents
on certain websites, in case they
suddenly disappear when some event
happens that might later cause certain
folks to file any charges for a
"class action case."

Copies of it just MIGHT be needed
and be sure to have the dates ON
each piece... make digital images of
the articles or evidence so you have
automatically and digital date for the file.

Do whatever you need to and can think of
to document every bit of evidence
not only for everyone, but especially
for your self if you still need to get an
Official Diagnosis and then need to go to
court to get whatever Disability or
Medical coverage or protect your Rights.

We will NEED to Document our
abuse/ill-treatment that has cause MORE
STRESS and hardship to us and our
families etc...

Gather ALL of this and if you ARE still
working, file your Claim for Disability 
Before you do anything silly 
like quit your job. Your odds of getting
BETTER results and Benefits will rely
on you doing this while you are

Benefit from those of us that did NOT
know this and have learned 
the Hard Way.

Tuesday, November 3, 2009

#32~ Hot Off the Unofficial "CDC Chatter" and MORE

First I thought this was an imposter site and
wasn't gonna pay it any attention cuz the
news sounded "TOO GOOD To BE TRUE".

Now it appears that: this site is
FULL of Great Stuff ♥

The Intro ~

Welcome to, 
an unofficial blog for employees of the 
Centers for Disease Control and 
Prevention (CDC), external partners
and others who are interested in CDC.
This blog was established for CDC 
employees and others to post 
information, express opinions, make 
comments and otherwise communicate 
about decisions, changes, events and 
other issues that are occurring at CDC.
This blog is intended to provide a 
forum for people to express their views.
It is not intended as a forum for
disclosing classified or confidential 
information nor is it intended in any 
way to compromise the mission 
and efficacy of CDC. 

with that Said... here are a few gems
from the site ~ so Have fun reading♥

Bad Day for the CDC ♥

Calls for new CFS Leadership at CDC

Good changes or Chaos inside CDC? 

PBJ-Hemispherix responds to FDA

Dr Friedenberg's testimony CFSAC

Just some FUN reading for when
you are bored LOL

*cheers  to all *

Comments & referrals to this blog
are ALWAYS appreciated. 

Monday, November 2, 2009

#31~ CFSAC~2Days Online and --> NO XMRV test Yet!

They finally posted the videos of the FULL
2 day event and I tested the Real Player
and this time it works "Just Fine."

Next I want to look for the TEXT of the
proceedings. If anyone knows WHERE
they might be posted??? Please tell me.

There's alot of this stuff I want to have 
so we can "quote them accurately."
...if ya know what I mean.... 

and you will once you watch it..

Thurs, Oct 29, 2009~ Day 1 is over 6 hours,
Fri, Oct 30, 2009~ Day 2 is 5hrs 15 min.

When you get to this page be SURE to 
Scroll down cuz as they add archives 
the meetings will go further down the 
page each day..OK?

For those that are viewing the event for
the 1st time.. "Let the Games BEGIN."

So get your popcorn & soda READY
( or whatever you are allowed )
and get ready to watch some Incredible stuff..
Some will make you cry with Joy, some
will make you feel Validated for the 1st time,
some will tick you off cuz some folks
STILL don't "get it" and other parts will
make you actually Clap & Cheer.
This meeting has been a LONG Time Coming.

Comments always welcome

I just called the WPI today and asked them
about that supposed XMRV testing at VIPDX
labs and they told me NO,
"there is NO Public Test yet."

Watch the WPI website for when they
have "licensed a public lab to perform tests."
They also asked me to email them the
email I had received that listed
the tests and their prices.

BEWARE of Trojan Horses......

#30~ CFSAC videos on youtube so far

I'm sure MORE will surface, but until then
and until the archives show up on the NIH
website and/or the text comments....

Here's all of the youtube videos I have been
able to gather so far.
I have tried to put them in viewing order..
They used "Real Player" video player
that gave EVERYONE practically
many problems so Bless the folks that
recorded these which are alot Easier to view.
even if NOT complete...

There were MANY more Public Comments
I want to see again.
I want to hear the part again about and
exactly who said that they were 
told NOT to teach or even discuss CFS 
in the Medical Schools?

and I want to see the TEXT & Video from 
Friday when 5  Committee members 
gave their "Retiring Comments"
and what the NIH had to say, as well as

what the CFSAC recommendations 
were at this point...

Hopefully the official video archives and text
will be available by sometime next week.

Here's enough to "wet your whistle."


FDA testimony-

Dr. Daniel Peterson

Part 1-

Part 2-

Part 3-

Part 4-

Q & A-

Annette Whittemore-

Prof. Coffin-

PUBLIC Comment Section-

Laurel's video-


call in lady- GREAT


Mike Dessin-

RE: blood bank guy-

I'm sorry this is all that was recorded
but SO many of us were on Such a HIGH
after Thurs that I know many of us 
CRASHED HARD on Friday....
I was all tuned in an fighting with
Real Player as I had the day before
but I just couldn't take it any more
I guess... I crashed also...BUT I left
the computer ON so it would still get
counted. I haven't heard what
the number of webcast viewers was
for Friday anywhere.?
If you know please Comment HERE
and let us know, OK?
And if you read the previous post
you will know WHY we crashed..

There are already MORE articles
that have been published and more
news will come... We need to 
STAY Encouraged all the while
NOT using TOO much Adrenaline
and doing what we NEED to DO
to maintain what Health we DO have
until we hear our next marching orders.

If and when we DO get tested for XMRV
and if we ARE positive... until we get 
put on some new anti-viral that has
been modified to work on XMRV, we 
need to WORK hard to Build ourselves 
UP so we can withstand the rigors
of the anti-viral meds...

Some of them have nasty side-effects...
Not trying to scare you..
but think like "our version" of chemo.
Any time you take a Strong drug
to kill a strong bug there usually
are nasty side effects for the host=you.
Look "how hard" this bug has had a GRIP
on us for so many years.
You think it's gonna go down easy?

So we must build UP our Nutritional diet
& Supplements, like fortifying before battle..
Doing any of this will NOT change what
your test for XMRV will be- it's either
there or it's not...

DO all of those sensible things
if you haven't already started.
You KNOW the list.. I'm not going
to repeat it unless you ask...

Be like a Bear and STORE UP
for the winter~ Healthwise ;-)