Last Chance to Support XMRV/Autism Research!!!
By Kent Heckenlively, Esq.
They call us "warriors."
I'm speaking about the chronic fatigue syndrome/ME community and the way they view the autism parents. When I hear them speak this way I'm proud to belong to our group.
For those who are most severely affected by chronic fatigue syndrome/ME, often needing to lay in bed for most of the day with the curtains drawn, they refer to themselves as "the unburied dead."
My desire to assist this community is borne of simple human compassion, but also by the prospect that in their suffering they hold clues to what is going on with our own children.
Generation Rescue, Talk About Curing Autism, and the National Autism Association are all asking their members to support this effort to aid the Whittemore-Peterson Institute for Neuro-Immune Disorders in the Chase Community Giving Program.
Voting ends at midnight, EST, May 25, 2011. This is the last day to vote.
I know how strongly at least two of the autism groups feel because I set up the meeting with Dr. Judy Mikovits to go over her research into the XMRV retrovirus, chronic fatigue syndrome/ME, and yes, autism. The discussion lasted more than three and a half hours. Many questions were asked, but the feeling in the room was almost electric. We might be on the trail of an answer which explains what happened to our children, and also why so many mothers seem to have a myriad of health concerns. A retrovirus can explain many (if not all) observations reagrding autism, from co-infection by other pathogens, oxidative stress, mitochondrial problems, vaccines acting as a catalyst for the virus to replicate out of control, and mysterious ailments of the autism mothers.
Dr. Amy Yasko, whom I consider to be one of the brightest minds in autism, is excited about this research because it dovetails with many of her long-term observations and suspicions. The same can be said of Dr. Jeff Bradstreet.
It's time for the legions of the chronically ill, such as the autism, chronic fatigue syndrome/ME, Gulf War illness patients, and the hundreds of thousands of children with potentially life-threatenting allergies and their parents to band together in a single forum to raise our voices. Let this be a small step in that direction.
I know everybody is tired. I know there are so many battles to be fought, most concerning how to just get through the day with our sick children. My own daughter just came home a few days ago after spending nine days in the hospital with uncontrolled seizures. But for one last time I ask you to elevate your gaze and take a few moments to vote for the Whittemore-Peterson Institute for Neuro-Immune Disorders.
Here's how to do it:
1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving
2. "Like" the Chase Community Giving by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote by clicking the "Vote Now!" button.
5. Search other organizations for whom you want to vote, up to 5 per Facebook account.
Voting for round two is May 19 – May 25
Kent Heckenlively is a Contributing Editor to Age of Autism
Folks, Whittemore Peterson Institute is losing ground in this challenge and they need your help now!
They have dropped to 9th place, being passed by yet another Hebrew academy. I have nothing against Hebrew academies, but I think the future health of people with neuro-immune disease is so much more important. It's critical that they finish in the top 10 as there is a $60,000 difference between 10th and 11th place.
Chase will donate to the 25 Charities receiving the most votes in Round 2 in the following amounts:
$500,000 to the Charity receiving the most votes (rank 1)
$400,000 to the runner-up Charity (rank 2)
$300,000 to the next runner–up Charity (rank 3)
$200,000 to the next two runner-up Charities (ranks 4-5)
$100,000 to the next five runner-up Charities (ranks 6-10)
$40,000 to the next five runner-up Charities (ranks 11-15)
$20,000 to the next ten runner-up Charities (ranks 16-25)
Please vote now!
IMPORTANT: It takes 4 steps to vote:
1) From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving
2) "Like" the Chase Community Giving by clicking on the "Like" button.
3) Go to the Whittemore Peterson Institute voting page:
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-for-neuro-immune-disease
4) Cast your vote by clicking the "Vote Now!" button.
Time is running out - let's make autism history.
Thank you!
Posted by: John Buettner | May 25, 2011 at 10:15 AM
Can anyone forward this article to here? http://www.autismweb.com/forum/
Posted by: A | May 25, 2011 at 02:59 AM
I have been oficially diagnosed with ME/CFS this year. Last year i was sexually involved with a new girlfriend that had tested negative for "every" STI, 6 weeks after our first act i started to get sick with what it seemed to be some sort of virus the initial symptoms resembled an HIV infection then at 8 weeks i had a viral spike(just like the XMRV monkey study) HIV and HTLV were ruled out many times, at 4 months after the infection a brain MRI showed brain demyelination, right now only a year after i got infected i have brain demyelination, one mass in my spleen, one in my lungs and one in my liver, i also have COPD, i have skin problems(rashes, shingles, multiple eruptive dermatofibromas like an HIV infection)cognitive problems, i have white trhush and a swollen tongue with teethmarks around it, despite all these health problems my CBCs are completely normal which is exactly like the monkey study they did because i know this virus has settled in all of my organs. The girl i was with told me that she has seizures all the time and the doctors can never find out whats wrong with her and her 5 year old daughter has a condition as well ....you guessed it her daughter has Autism and it seems like a very severe form , she is five years old and still has not been able to learn to use the potty and still can't talk and has seizures all the time. To me there is and there wil never be any doubt that i got a retrovirus sexually tranmitted and its what caused my ME/CFS and also what has been giving this girl and her daughter all these problems. It is so obvious that is a retrovirus there is no other explanation. No othe country in the world has such a high prevelance of kids with autism as the USA in fact i went to Uruguay last year for vacation and i met a doctor who told me he has never seen a case of autism in Uruguay in his 30 years of being a doctor.
There is no other explanation there's a lose retrovirus that is infecting people in the USA left and right.
Last week i went to a support group for people with ME/CFS that have kids with autism and i saw at least 6 boys around age 8-10 that have similar cognitive problems, skin and the tongue problems as me,little 8 year olds with a completely white tongue which is a sign of a compromised immune system(like HIV and HTLV) it just broke my heart. How can doctors be so dumb and not realize that these kids have some sort of infection i can spot one right away.
Way to go CDC you guys have committed a crime that not even the best fiction movie makers could ever think of.
What a shame that the health agency that is supposed to stop the spread of diseases has been run like a political party rather than actually do research and science, what a bunch of incompetents.
I propose this, the NIH should do a study to figure this whole thing out. Why don't they send blinded samples to the WPI of people with ME/CFS and healthy people, of course the WPI shouldnt know which ones are which if it turns out that the samples of people with ME/CFS turn up positive for XMRV and the healthy ones don't then its obvious that the people with ME/CFS have an infection wether is XMRV or whatever other retrovirus they are picking up, then everybody, the CDC,NIH,NCI and every other health agency should put their politics aside and have the WPI show them how to find it , easy as that.
But egos and politics matter more to these criminals than actually stopping the spread of a retrovirus.
Posted by: MV | May 25, 2011 at 12:06 AM
We really need everyone to vote, ask your friends to vote, post on your facebook page that you voted, ask you relatives to vote, email everyone in your address book, email everyone you attend church with, email everyone at work, have your pets vote, stand on the street corners, go door to door, sky write, hire a plane to drag a banner, go on TV, lets see did I forget anything?????
Posted by: Lilly Meehan | May 24, 2011 at 12:01 PM
After "Liking" the Chase Community Giving page you can go directly to the Whittemore Peterson Institute page by clicking this link:
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-for-neuro-immune-disease
Together we can make Autism and other neuro-immune diseases history.
Posted by: John Buettner | May 24, 2011 at 08:39 AM
Oh my word, this moved me to tears.
I have ME (sometimes called chronic fatigue syndrome)and the work of the Whittemore Peterson Institute really is a ray of hope in what has felt a very hopeless and neglected area of life.
I have friends and family who have (lovely) children at various positions on the autism spectrum, so occasionally I visit an autism-related page on Facebook, to keep me aware of things.
What has struck me often there is the same sense of being unheard, unlistened to, neglected, misled and patronised that people with ME and CFS experience. Of knowing much about the conditions we live with, in great detail and with great insight, and frequently having all this dismissed. On many occasions I really have empathised with some of your experiences, though I don't know what it is like to have a child with autism.
I truly believe that the Whittemore Peterson Institute are worth supporting. Their starting point is respect for the patient. Their scientists are brilliant, making breakthrough discoveries and forming postive collaborations with other important research bodies. They give me hope. I so hope you will vote for them. Whatever your choice, I wish you well, and hope that we, as communities with some important shared experiences, can link up more to help each other.
Posted by: belinda tilley | May 24, 2011 at 08:10 AM