#71~ ME/CFS videos- "What's wrong with ME ? "

If YOU had been physically sick for more than 20+ years 
would YOU like to be told it was ALL IN YOUR HEAD?

I felt at this point it was time to share some the recent videos 
to help others understand Just HOW fricken LONG this has 
gone on and What a CRIME it is That Medical AUTHORITIES 
IN A NUMBER OF MAJOR COUNTRIES have tried to ignore 
this Pandemic and attribute it to a "psych" problem...

MORE Likely~ THEY have the problem of DENIAL and are 
causing a HUGE loss of Economic income to their countries 
and depleting the family resources of all of the families that 
care for the patients that have ME/CFS... 
Just listen to Dr Bell's Testimony before the CFSAC.

Many times leading to SO much frustration, NOT only for the 
families that end up in bankruptsy or divorce.. 
but ALSO the many patients that have already been 
ignored for 20+ years and abused by the medical profession 
and can SEE what this is doing to their families.. 
and that have NO hope left and end up
committing suicide.. 

In addition to those that die from related/associated life 
threatening conditions that have BEEN IGNORED because 
they had been told they were a psych patient.. 
NOT TRUE and NEVER Has BEEN !!!


YES< ALL of this has been Documented in MANY PLACES 
and SOON all of this will be made MORE accessible to the Public 
and it's will prove to be the Medical Pandemic Equivalent 
of the BP Oil Spill/Destruction of Nature  in the Gulf of Mexico, 
that has and will cost many lives (human and otherwise) 
and take YEARS/Decades to fix IF ever..just because they 
ignored some safety rules and chose to go the quick and easy way... 

Well Medical Authorities AROUND the world.. YOU ALSO 
"Will be Guilty" of Ignoring a Pandemic... 
and you HAVE been told this MANY Times.. 
so don't play innocent with us..


The PROOF is being uncovered "right now" in many 
Scientific Research Labs and soon there will be MUCH MORE 
news, besides just a Dr Oz TV show..

ALL of these patients DESERVE even BASIC medical care..
but many "after all these years" are alone, bedridden, and 
have trouble even with basic daily care..Does ANYONE CARE?
SHAME of the Governments that have caused this to happen 
to their Citizens w/o even caring enough to DO Proper Research 
and slamming them with a Hippie "Yuppie Flu" name or even 
worse sluffing them off to the psych wards.


Since a picture is worth a thousand words.. Here are some 
videos...many new or old to you.. but worth sharing if you 
haven't seen them or wish to "share them with others you 
WISH to educate." 
PLEASE Turn your Volume UP.... and RePlay if Necessary.


God BLESS ALL of YOU that are Choosing to Help us...

Please REMEMBER that in the "Rest of the world"
"What the USA calls CFS~ is called ME",
which is VERY different from plain
chronic fatigue.
This video basically explains ALL of the same symptoms
that "REAL ME/CFS patients in the USA HAVE" !!!
Those that are "simply fatigued" or "depressed"
will NOT have MOST of these symptoms. Period.




The following are the 2 Movie Trailers  created "so far"
that will be a Documentary about this whole FIASO.


What About Me? Trailer - UK from Double D Productions on Vimeo.


What About Me? Trailer - USA from Double D Productions on Vimeo.

We THANK Double_D Productions with ALL our Hearts and 
LOOK forward to seeing the completed film. 
They just returned from the Cannes Film Festival, so this 
is NO JOKE folks... Thankfully and About TIME !!!


I will leave you with a few that will tug at your hearts
so you can SEE and HEAR the Reality of this illness.



For dear Sophia, in the words of her mother..
PLEASE UP Volume and LISTEN thru her accent.



Dr Donnica Moore explains in more detail about what
XMRV 
can do and WHY it is SO IMPORTANT and JUST the beginning.



This was a BIG accomplishment for us to get Dr Oz to 
do 
an actual SHOW (re-DO from a show a few weeks B4 that 
was ONLY about chronic fatigue NOT CFS...
AND TRUST ME, he got a LOT of Flack for that comment about exercise because he DOES NOT 
TRULY understand the extent of Relapse after exertion.


There is even a lab strictly set up for studying this 
that is part of the University of the Pacific, Stockton, CA. called The Pacific Fatigue Lab and here is there link
http://web.pacific.edu/x31814.xml
Their Head (Dr. Snell) is NOW the Current Chair of the  CFSAC 
(Chronic Fatigue Syndrome Advisory Committee)
that reports to the Sec. of Heath on Pres. Obama's cabinet.

XMRV "very well MAY' also prove to be the link for atypical MS,
Autism, Fibromyalgia, Lupus, Lyme Disease, Multiple Chemical Sensitiviy,
and how many more... we don't know YET... 
We DO KNOW that is IS found in men with Prostrate Cancer and 
HAS shown up in some patients with Lymphoma.

Please Help the ONE place that is currently already doing the Research along with other facilities to get us help...
The Whittemore Peterson Institute, Reno, NV.
 http://wpinstitute.org a 501C3 


YES, we ARE being/have been abused and it DOES KILL...
It "could" be your son or daughter next...
WILL you Help?

Bless you for Reading and watching THIS far..
Many more NEED to be Educated about this..
We have already been informing the blood banks
of the World and working with them to screen for this 
just like they were made to for HIV...


YES, we ARE fighting with not only City Hall, but many governmental
agencies around the World to Educate the public
for the health and safety of the WORLD.


Bless you and PLEASE Share this info, even if you
can't afford to donate or help in any way.. 
Every "tiny bit' of help is IMPORTANT ♥♥♥


Please leave us comments and let us know IF or How
any of these diseases has touched your life yet...


We ARE a World Family now working together for 
our Health and Well being.. Health effects EVERY
ASPECT of your Quality of Life...


May  you help NOW before someone you KNOW
is hit by this terrible life-altering illness...

#52~ Will you FIND us in TIME? MAY AWARENESS DAY

We are right in front of you, we even look like you...but you can not SEE us.
We have been here since the mid 1980's when HIV broke out and our friends died.
We have been here watching you ignore us and pretend that we do not exist,
We have been here "Crying Out for HELP" to Deaf Ears.....

Last year something happened tho that maybe made you HEAR our name !
There was a 3rd Retrovirus ever that was discovered to have a link
to what we have been going thu for the last 20+ years in darkness.
ONE Mother and Father could NOT take it any more..

Many of us do not have families left alive and many friends have already passed.
Many of us worked in hospitals helping the sick for MANY Years...
Yet many of us were the ones to get sick also when this illness broke out.
The rest of the world calls it M.E., but the CDC decided to give it a
low class name that eventually was nick-named the "Yuppie Flu"- NOT.

ME/CFS - A condition which can leave people bedbound
and paralized for years on end.
Can you imagine living like this?
We don't have to imagine, Its our reality...

We are STILL Here and We WANT to NOT be ignored any more.
There are now 4 million of us in the USA, 
and probably 10 million Carriers....
It has been estimated that there are 28 Million infected worldwide.
If XMRV IS the Cause.,.. Men BEWARE 
it "can cause" Prostrate Cancer also...

If XMRV is not our Cause then it certainly plays a part
in messing with our neuro immune system and getting them all confused.

What is this illness that YOU, the Public, and until now, YOU the CDC

are doing to the economies and mental health of the families

and care-takers involved in helping us Survive while you

twiddle you thumbs? aka while Rome Burns.. NOTHING.

Many of us do not even have medical coverage and the bills for
the families for Doctors that haven't even been trained to KNOW about
this illness is a flat out SIN and Disgrace. In fact a Prof trying to
teach about our illness in medical schools and on committees
was threatened with dismissal and others already HAVE been.

Sounds like the plan of "See NO Evil, Hear No Evil" is just

helping our neuro immune illness get worse and on top of that

might even be infecting the world's Blood Supply...

In addition to the few videos I have included here for your
education and enlightenment... 
Please take this moment to know that 
May 12th is ME/CFS/FM Worldwide Awareness Day and WEEK.

Please send this post to friends and family that 

you feel would benefit from this education...
and take a minute to download and
put a Blue Ribbon on your avatar (links are on THIS Blog)
or any other thing you wish to help SHOW that YOU
are wanting to Help us Find a CURE 4 ME,
so that Millions MORE don't have to suffers thru this
like we have been for the last 24 years....
maybe even one of your children or grandchildren ?

Thank You and Bless you for reading thru to the End
and I HOPE that you will stand with us to End this illness
that has also been linked with Autism, atypical MS,
endometriosis, Thyroid & Adrenal disease, and possibly
Lymphoma ~ from which my mother passed away.

This illness has been named ME/CFS which does NOT
do the havoc and destruction it wreaks of Injustice.

Thank you for doing your part to Help others "Be AWARE."

The ONLY Research institute in the USA currently 

TOTALLY dedicated to neuro  immune illnesses is the

Whittemore Peterson Institute in Sparks, Nevada.
http://www.wpinstitute  ~ God BLESS Them for Caring !!!

And Bless everyone that CARES about this illness as we 

WANT to be Healthy so we can work and HAVE lives AGAIN....

We may not be "your normal" but whatever can be done

to help us be even a little Better will Help the Economies

of the WORLD, cuz then we can be Functioning Citizens AGAIN

and even Giving BACK, and NOT be in Solitary Confinement

of the 4 walls of our bedroom like those on Death Row....in this 21st Century.

#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
meeting:


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
etc.
..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 -
http://www.theyworkforyou.com/

Labour party - Secretary of State for Health
- Andy Burnham - dhmail@dh.gsi.gov.uk

Conservative party shadow health minister
- Andrew Lansley - lansleya@parliament.uk

Liberal Democrat shadow health minister -
Norman Lamb - normanlamb@hotmail.com
(also has a Facebook page)