#125~ ME/cfs: Emily's Last words ~ RIP

Well folks, That "Invisible Illness" ME/cfs has just claimed another loving soul.
Another that fought long and hard and did her share of Advocacy..
Please share this with as many as you can that think this illness is STILL "All In Our Heads."

RIP~ dear "Emily Rose Collingridge" 1981-2012

Maybe something will make them finally realize that this could be their friend or daughter or son or grandson..... NO ONE is exempt.

May 12th, our 20th Anniversary of Advocacy is coming soon....
Please speak to your local Support Groups and make plans NOW.
We can NOT sit still any longer or again..

Please ASK your friends to HELP if they care for you "at all."
Other illnesses have "Walks" done by friends and families...
WHY Won't OUR's do the same ???

ASK THEM WHY ???
After they read this.... Thanks.

******** 
Emily's mother Jane has asked for these last words from Emily to be reposted. They were written over many weeks – while her daughter still had the strength in her body to do so. Please repost as this is Emily's final wish.

Jane Collingridge: "It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it"

Emily’s Appeal:

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old.
In April 2011 I turned 30.           I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion.

If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly. My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long.

ME has made my body an agonising prison. My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. Many days I feel utter despair. But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong.

As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it.

This is something that must change. And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.” By Emily Collingridge 2010-2011

Thank YOU for taking the time to reading Emily's "Last Wish."

May you HEAR some of her heart thru her words and know that
there are over 17 million people with this "Invisible Disease" that has
now been ignored for 3 generations, and our Memorial list is Way TOO LONG.....

NOT ALL DISEASES "ARE VISIBLE," but that doesn't mean they are not REAL.

http://www.severeme.info/about-emily.html
http://www.blogistan.co.uk/blog/mt.php/2012/03/20/emily-rose-collingridge-1981-2012

ShareThis

#115~ VOTE: Help WPI + us at Chase Giving

PROJECT: GET OUT THE VOTE FOR  WPI
May 18th  9pm (PST) thru May 26th 9pm (PST) USA

Dear Family and Friends and Yet-to-Be friends~

I have a Huge Favor to ask of all of the readers of this blog. Please know that this next week is very important to millions of people that need WPI to be able to continue helping us and doing their research. 

I sincerely beg each and every one of you to participate and "call in" any favor you can from all friends and family and ask them to ask their friends and family so we can get as many votes as possible to help the research continue. 

These are indeed dire times and the opportunity of this Grant has been placed before us, which ONLY takes a FREE VOTE aka ONE CLICK is Incredible and it is now our turn to step up to the plate and just do this one this one thing from around the world to help WPI and all of us with any Neuro Immune Disease.

I personally will be sending out this blog, emails, tweets and phone calls to my friends "that I Know Care" and even those I don't and ask them to participate and send out emails and post on their FB page about Voting for WPI and the directions in a brief paragraph, after we have created it once the contest officially opens.. Ask them to look for it and please help. 

If you belong to a church ask your friends to help, make an announcement, talk to your minister/priest or any clubs you might belong to, and even all of your local support groups. 

Get Creative and ideas WILL come to you of people and places to enlist for this one little thing we can do from around the world to help WPI the Facebook.

Thanks and bless every one of you that decides to help and participate. ♥

The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below beginning May 18th at 9 pm PST through May 26th at 9 pm PST.


STEP-BY-STEP Instructions:


1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.


2. Join Chase Community Giving by clicking on the "Like" button.


3. Do a Chase Giving "search" for Whittemore Peterson Institute for Neuro-Immune Disease. (only including this in case Chase chages the link for the 2nd Round..
I know how to spell "assume" and always like to Have a Plan B in case the link below doesn't work for some reason, OK ? )


4. Cast your vote for WPI by clicking the "Vote Now!" button.


5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.


CHASE COMMUNITY GIVING: BIG IDEA


The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and Autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide onsite care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund. 

WPI’s commitment to discovery has already inspired much hope worldwide. 

*** Now it is time to put hope into action by offering meaningful patient care to these under-served populations.***

Please place this message at then end of each email for the whole next week:


Please take a moment to vote and ask your friends and family to vote too!!! Chase Community Giving is giving us a chance to win a $500,000.00 grant for the Whittemore Peterson Institute.

Here are two links. 
Voting begins May 18th at 9 pm PST and ends May 25th at 9 pm PST, so mark your calendars.

Current FB- WPI - Chase Giving page
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo?m=410af99a


A shortened link to use for Tweeting that will also take you to the same WPI @ChaseGiving FB site as above, so Use this for Tweeting, OK

http://bit.ly/mrWckA

Please share this video with your friends that don't know anything about ANY Neuro Immune Diseases and Help them understand it's about MANY diseases and maybe this will help them Understand the URGENCY of this Chase Giving opportunity we have been given This WEEK.


Bless you ALL and Thanks for anything you can do to Help...

TOGETHER, we can Help WPI and WIN this one, I just feel it...

So **GO Team GO**  and ♥Hugs♥ to all.....




We have this ONE Week to Help Create this Miracle of Funding that will mean SO Much.... Let's DO it ♥

ShareThis

#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.

#3 Bio - about me Cont'd

It is at the point where the Patients are NOW
educating the Dr's.. ta Heck with whether you even
HAVE "medical insurance" what good does it DO
if the Dr's have NO Idea what you have?
They look at you like
"IAIYH" aka "It's All In Your Head."

Turns out there was a Big Outbreak of this same
thing up near Lake Tahoe (Incline Village) in the
mid-1980's and the medical community "took notice"
and sent researchers from "Around the World".

Over the course of a few days they took "Histories"
from all of the patients and "en masse" they
DECLARED that what they HAD was called
ME=myalgic encephalomyelitis.

But then... since this WAS in the USA
the CDC finally showed up late, as usual,
and did their questioning and at the end of
their process declared that EVERYONE of the other
Medical Organizations WAS WRONG and they
decided to re-name this illness with a
"made-up name" that ONLY labeled it
"by ONE of the symptoms."

(sub-text: one belief is that since this was
occurring at about the same time as the
"new" discovery of AIDS, the CDC did not
want everyone panicking that there were
2 epidemics going on at the same time.)

HOW STUPID can you get? So now this
World Disease of which there are 28 million
called ME, in the USA is called
"Chronic Fatigue Syndrome" among a few
other similar names. That's like saying one of your
symptoms is chest pain so we'll call your illness
"Chest Pain Syndrome" but forget about the
Heart Attack you just hard and ignore all of the
things that caused it, and we will move like
"Molasses in Winter" in trying to do any Research
for it...and Hello it has been 25 years now since
this outbreak. Can you say 28million equals
an Epidemic?

There are NOW many Worldwide orgs. researching
for ME, but the CDC and USA are lagging WAY
behind, just like we have in the Research for
Stem Cells in the last 8 years.. where the rest of
the world has been doing stem cell research for the
last 18 years.

There are ONLY 2 Dr's that were UP at
Incline Village that have continued to Follow this
illness and done their OWN Research..
Dr. Cheney & Dr Peterson.

Dr. Cheney has now just finished a year of
NEW Research and is finding that for
long standing cases the only thing that finally Helps
because of all the damage done to our
entire systems + organs over the 20+ years is
Stem Cell implants http://cheneyclinic.com
Due to the lack of Stem Cell Implant locations in
the USA and the FDA lack of support for them,
he is forced to take patients abroad for treatments.
How stupid is that CDC?
"Get Your Act Together" PLEASE.

Dr Peterson has partnered with a backer and has
formed the WPI = Whittmore Peterson Institute
http://wpinstitute.org on the campus of the
University of Reno, NV., "WPI for
Neuro Immune Disease exists to bring discovery,
knowledge, and effective treatments to patients with
illnesses that are caused by acquired dysregulation
of both the immune system and the nervous system,
often resulting in life long disease and disability.”

I give MUCH Praise and Thanks to these 2 Pioneering
Dr's that have the Conviction to Continue doing the
Research that the CDC is dragging their feet on..

So that's ONLY Part of my back-story..
I will add other articles and past & current attempts
on this blog of my Attempt to "StandUP2ME"

cuz Hello CDC ~
"CFS" is NOT what I or the rest of the 4 million
in the USA have. So because of the CDC"s definition
of this illness we have been described "out of having"
what we DO have , and cuz we don't live OUTside the
USA we can't get the Correct Diagnosis of ME,
so "we can NOT get" any other Dr's or Courts to
acknowledge "What we DO have" or
Help us in any way..Medically, Emotionally, Financially,
Supportive in-home Services, online training for Help
to get trained to even DO some job online from Home
so we can support ourselves, we & those that
"Have Families" are left to fend for ourselves..

It's REALLY Embarrassing that this Great Country
not only does NOT have any kind of
Universal Medical Coverage for ALL, but that they let
the CDC & FDA be pawns and NOT "work FOR the People"
of this country like they should Properly be doing..
to be continued as long as
I am Alive..