#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 ♥

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#114~ CFSAC Testimony- Mary M. Schweitzer, Ph.D.

This will be the first of a few "Special Guest posts" I will make, with the permission of the authors, of their CFSAC Testimony for this May 2011 meeting. I am doing this in the hopes that many of you that are not even able to view the meeting on the web and don't belong to Facebook or a forum will be able to read these and know what we are telling the CFSAC. I am attempting to include a cross-section of the different testimonies so you will get to see the big picture of this illness and the dialogue that will be taking place May 10+11th, 2011, in Bethesda, Maryland, USA.





Testimony
Mary M. Schweitzer, Ph.D.

First, I want to thank Wanda Jones and this committee for giving us a chance to speak, and in particular, for livestreaming this meeting so that patients who cannot travel (which would be most of the ones I know) and patients who are housebound (which would encompass too many of those I know) can view the meeting from their homes, both in the United States and abroad.

I also want to thank Dennis Mangan, the NIH committee that I was privileged to be a part of, and all the participants, for the outstanding State of the Knowledge workshop on such short notice.

I want to focus on the Centers for Disease Control and Prevention (CDC) today. CDC has been studying this disease for over a quarter of a century, and haven’t gotten very far. It is time that they caught up with 2011.
First I want to make clear that when I refer to CFS, I mean the Fukuda definition (1994), and when I refer to ME/CFS, I mean the Canadian definition (2003). When I refer to M.E., I use the Ramsay and World Health Organization definitions.

1. CDC’s Portrayal of the Disease
Suppose you broke your leg really badly. You knew it, your family knew it, your friends who were with you knew it. Somebody called emergency, and the ER techs came out. They had already been told by your family that you had a broken leg, but they said they had to find out for themselves. They came up to you and said, “Why do you think you have a broken leg?” Startled by the question, you said, “because it is obviously broken!” (Selfreported, one says to the other.) How about you stand up and we can see what’s going on with that leg. “NO!” you responded! “That’s going to hurt!” (Catastrophizer, they murmur among themselves. People who catastrophize about pain are more likely to feel pain.) Then they write a prescription for Prozac, say “Take this until you feel more comfortable about the prospect of standing up,” and they leave.

Now, of course that was a silly story. But it is exactly how I was treated by the first specialist I saw for this disease. “Self-reported” is an insurance term that is used by British psychiatric “experts” on CFS; and there is a published paper out there about CFS and fibromyalgia that uses the correlation between these diseases and fear of pain to conclude that people who fear pain are “catastrophizers,” and “catastrophizing” causes pain. There is a large body of psychiatric research on this disease that is just plain silly.

So don’t be surprised if patients are a bit worried about what researchers say about them, or what the government does about them. If you had a badly broken leg and nobody in the medical profession would believe you, you’d be a little cranky too. Indeed, when scientists injected lab monkeys with HHV-6, Variant A, the poor things hid in the corners of their cages looking supremely miserable, and one would drag his left arm and leg when they made him walk. Poor baby. Been there. At any rate, the scientists working with the monkeys said that they got a little cranky toward the end. No kidding.

Ever since CFS was abandoned by NIH, CDC has been the central agent of promoting views that are diametrically opposed to our experiences. For 25 years they have insisted this disease as caused by some sort of “stress,” – at first the stress of yuppie women “trying to have it all.” Today they claim the stress is caused by having been abused as children – but they’re still saying the same story. It’s just caused by an inability to handle stress.

Something else I have faced when coming here or when at a conference on my disease, is the phrase “Oh, I don’t believe that.” I recently wanted to talk with a well-respected virologist about HHV-6, Variant A, which I is a vicious disease, and which I have in both my blood serum and spinal fluid unless I am on Ampligen. The researcher stopped me as soon as the words came out of my mouth, “I have HHV-6, Variant A.” “Oh, no you don’t,” he said, cheerfully. “There’s probably just some artifact in your blood that makes it look as if you have HHV-6, Variant A.” That’s pretty much the same thing Stephen Straus said to me when I testified here twelve years ago about HHV-6, Variant A. And my response is the same now as it was then: I was part of a study of a handful of CFS patients conducted by Dharam Ablashi, the co-discoverer of HHV-6 and its two variants, while looking at samples from AIDS patients at NCI. Ablashi saw the virus in my lymphocytes. It was no artifact. But …”Oh, I just don’t believe that” is something I often hear. Hardly a scientific response, don’t you think?

In the meantime, we remain sick. So let me offer my first suggestion: if the approach hasn’t helped anybody with the disease in a quarter of a century, time to change the approach.

2. When is CDC going to begin to identify subgroups using biomarkers?
The Fukuda article from 1994 that gave us the most commonly used research definition also strongly urged CDC to begin identifying subgroups using objective biomarkers. That was 17 years ago. But if you look on CDC’s website, when they discuss biomarkers or microbes associated with The Disease, they always put them in the context of “The Cause” of CFS. No, that’s not the point, guys. A biomarker does not have to be “The Cause” to be useful. It just has to correlate. And when we are trying to identify subgroups, it doesn’t have to correlate with everybody who has ever had a diagnosis of CFS.

I belong to an identifiable subgroup. When in relapse off Ampligen, I have, among other things, immune biomarkers and activated opportunistic viruses. There is a
subgroup of patients who have precisely what I have, though I have more viruses than many, and some have viruses I don’t.

My immune biomarkers would be the 37kDA Rnase-L defect, which always shows up when I am off Ampligen and disappears when I go back on it, and natural killer cell dysfunction. During my most recent relapse, from September 2008 to the summer of 2010 (after having been on Ampligen for several months), I had a natural killer cell function of 2%. I also have an abnormal cytokine profile.
During relapse, I had active viruses in both my blood serum and my spinal fluid. I hold a flush in herpes viruses – Human herpesviruses 4-7. My relapses usually start with Epstein-Barr, which comes and goes while I am really sick. I test positive for active HHV6, Variant A, cytomegalovirus, and HHV-7. I also have Coxsackie B. I have friends who have parvo or an adenovirus, and I have friends who do not have HHV-6 or cytomegalovirus. As for the immune biomarkers, there’s a pretty strong correlation between those who were in cluster outbreaks and natural killer cell dysfunction.

I think we’re a subgroup, and I’d be very grateful if that could be recognized. The researchers who work with HHV-6 have been asking for years that Variant A and Variant B be recognized as different viruses, with one renamed HHV-9. CDC has turned a deaf ear to their research and requests. Intriguingly, Variant A is found in AIDS, CFS, and in the lesions of MS patients. Variant B, which causes roseola in children, is the virus that reactivates when patients are put on immunosuppressant drugs. While Variant B is endemic (it is the childhood disease roseola), in 90 percent of the adult population, Variant A is found in only 7 percent of the population. These are different diseases, but we need CDC to recognize that.
Finally, outside scientists at the NIH State of the Knowledge workshop strongly urged researchers to adopt the VO2 MAX score as an objective marker of the disease. Mine were significantly abnormal during the relapse – 14.5 – and even now, at 16, not a whole lot better. I have a lot of recuperating to do.

3. NCHS, within CDC, is overseeing the development of ICD-10-CM. We need to keep CFS in the same code as in ICD-10 – under neurology, at G93.3. That’s where it is in WHO’s index to ICD-10 – adopted by over one hundred nations. It’s also under G93.3 in the tabular versions of the clinical modifications produced by Canada, Germany, and Australia. It should not be placed in R53.82, under “vague signs and symptoms.” We would be the only nation to have CFS in R53.82. Why?

4. CDC needs to stop using British psychiatrists as consultants and guides to the definition and treatment of CFS. I am speaking specifically of Simon Wessely, Michael Sharpe, Peter White, and nurse Trudie Chalder. The latter is a specialist in “factitious illness” and “factitious illness by proxy.” Is THAT what CDC thinks of us and our disease?

It should be noted from the outset that the British psychiatrists do not use the Fukuda (1994) definition. They use the Oxford definition to diagnose CFS. The Oxford definition requires six months of debilitating fatigue and NO physical conditions that could explain that fatigue. Conversely, psychiatric conditions are NOT excluded from Oxford. I had an email exchange with Simon Wessely in 1996 when he told me that I did not have CFS because I have NMH and Hashimoto’s thyroiditis. They also consider a failed Romberg test as exclusionary because it is a sign of neurologic abnormalities – in contrast to my original specialist, Dr. Marsha Wallace, who used my inability to pass a Romberg test as diagnostic for The Disease (as is also true for the Canadian Consensus Definition of ME/CFS.)
The British psychiatric view of CFS is that it is an “inappropriate illness belief.” That is why they prescribe Cognitive Behavior Therapy – not to help patients adjust to the disease, but – in their own words – to “reverse” the disease, to cure the disease. Graded exercise is recommended to get these poor women who have been deconditioned by their inappropriate illness beliefs back into shape and able to return to work and household.

Is THIS what CDC thinks of our disease? If not, why does CDC’s website suggest cognitive behavior therapy and graded exercise, perhaps with an SSRI added and something to help patients sleep, as the appropriate treatments for this disease? Why is there a direct link to the website for Peter White’s psychiatric practice at St. Bart’s hospital in England?

#113~ 2nd Chance: Pres. Obama Can you Hear Us ?

Pres. Obama, We want you on "Our Dream Team"
Please Help make Our Dream a Reality ♥


Hello everyone~


We NEED to Build Our PR "Dream Team"~ Let's start at the Top with this campaign, OK ?


The other day we the ME/CFS, Neuro-Immune Community of patients, family and care-givers have been given a "rare opportunity".. The wife of a ME/CFS patient actually "got the ear" of the President and a Promise from him that he would contact the NIH about ME/CFS when he got back to Wash. D.C.


So this request is for "ALL of you Everywhere" on ALL Continents, OK ?


OK, "NOW is our Perfect Time" for us to FLOOD President's "inbox" at The White House and make SURE that he either ACTUALLY gets to read one of our written letters, emails, faxes or phone calls, OR if Not then at least his  STAFF WILL Definitely KNOW  that We ARE out here.. and when he asks them to call the NIH, they will also tell him that he has been receiving TONS of correspondence from ALL of the Neuro-Immune Community regarding ME/CFS.


We have been give this chance and we must NOT waste it.. Especially when if we get our letters to him this next week, Send them ON April 29th, OK ?


That should give his Staff time to read all of them and get him something just in time before the 2 days of the CFSAC start on May 10+11th, and there will be a delegation of people (from the "early onset" ~ "Stand UP for ME" group with children meeting with Congressional members to "put some faces on this" on May 11th and Our International Awareness Day is May 12th.


Recent News and background~


Courtney Miller asked President Obama
"Q    Mr. President, my name is Courtney Miller .  And I want to thank you for returning science to the national priority.  And I need to ask for some help for my family.  My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis.  And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness.  And I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games, if there’s a way to make improvements on that."
......
Answer snippets:
“I am a Christian and a person of faith and I believe that God gave us brains to figure things out,” Obama said when asked by a woman in the audience what his health policies could do to assist her husband who is suffering from Chronic Fatigue Syndrome. (1)


"Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it.  But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment.  Okay? " (Applause.) (2)


Here is the video of that event:

Listen for his comment at about 11:45min. about medical research.
Courtney Miller is at around 47 minutes time,
asking Pres. Obama for funding for Chronic Fatigue Syndrome...




Why we are asking YOU ALL Now from ALL around the WORLD to Help us let him KNOW that this indeed IS a Worldwide PANDEMIC.. He needs to receive letters from all over the world, OK ? So USA, UK, Iceland, Belgium, Norway, Sweden, Canada, Australia, New Zeland, Spain, everywhere you know there is ME/CFS please watch and understand WHY we want to FLOOD the White House with Mail so we can STAY "ON his Radar" and maybe we can Help him Understand that BY Helping US, it will SAVE the country and world's economies money because once well again and on meds like Magic Johnson, a basketball player he will know of , we can then get some jobs back, get our lives back, and will be HONESTLY "Happy to Pay Taxes" and not be broke or on disability any more...

This is also WHY we want to DO this~

How Mail is Handled at the White House.



***********************************************

Talking Points for your Letters:

*** This Category of Neuro-Immune disease includes ME/CFS, Autism, Chronic Lyme Disease, Gulf War Illness, mitochondrial disease, and has also been linked to Atypical MS, and numerous cancers including an Aggressive Prostate Cancer, Lymphoma, 25% of Breast Cancer and can include many serious conditions such as MCS Multiple Chemical Sensitivity, OI/POTS Orthostatic Intolerance/ Postural Orthostatic Tachycardic Syndrome, which drops your Blood Pressure in half when you stand up and makes your heart work 4 times harder to help circulation so it can pump nutrients and oxygen to your body and BRAIN, otherwise you will pass out in 5 min if standing STILL . They also usually become VERY sensitive to many meds which makes even treatments harder. It's a complete long term progressive disease that devastates families, while it bankrupts them and the insurance companies DO NOT pay for any tests that are required and thus they pay for NO Treatments... What's wrong with THIS picture ?

*** The CDC must be made to IMMEDIATELY change their website so that will include testing for the co-factor infections many of us have, like EBV, HHV6, etc. Eliminate the Treatments of GET + CBT, because it has been PROVEN that for many of us with OI/POTS "any GET" is yes Literally Harmful to us..and the ONLY CBT that we need is what Dr Lucinda Bateman of Utah uses which is to "teach us the limitations of what we can and should NOT do living within the confines of our illness so we do NOT do anything to cause us to be worse or cause will cause us to Flare or Crash."

Please check with Dr Chris Snell, Current Chair of the CFSAC with regards to the P.E.M. (Post Exertion Malaise) and his Stacey Protocol for testing us for this that has been legally accepted in courts to PROVE that this exercise hurts us and causes us cardiac harm, and also check with Dr. Leonard Jason, CFSAC member who along with Snell testified at the NIH State of Knowledge ME/CFS Workshop April 2011 and also validated that we do NOT have ME/CFS because we are Depressed. Quite the Opposite actually. Thus the CDC MUST be made to Change their TOO Inclusive numerous changes made to the Original Definition to what CFS meant when First "coined" when the symptoms listed matched MUCH MORE the Canadian Case Criteria Definition which if you check with the Dr's that have been treating the serious patients for 20+ YEARS..  THAT is what we Truly HAVE... is ME.


And Yes, Dr Cheney found spots on the brain scans he did on his patients in the 1980s that matched the spots on the brains of HIV patients.. which again tends to lean towards evidence of a retroviral connection.. The CDC's insistence that a disease will recognize a countries boarders is about as 18th Century medicine as I have seen ~ WAKE THEM UP ~ Please... They are currently an insult to this Country.
They are sent Positive samples of Positive Viruses and "Can't Detect CR*^", as far as we feel. It's Truly embarrassing...

*** Please let him know that there are also 7 cohorts in 7 countries, tested by different labs, that have also tested Positive for the 3rd Human Retrovirus, and there has been NO definite other reliable research done to PROVE that this is NOT an actual human pathogen or why thousands of people ARE sick with this retrovirus and other co-infections of which ME/CFS is one, and that these people "NEED Clinical Trials NOW," NOT in 3 yrs or when ever the Lipkin & other studies are done... These people Testing XMRV+ "HAVE are retrovirus AND co-infections" and that alone SHOULD automatically make them eligible for Some sort of Help~ immediately !!

***One year has already passed since even the Emory University published a paper that listed numerous ARVs that could be already considered for usage for those with XMRV/HGRV. That was a YEAR ago ~ Where's the Clinical Trial... We have been sick FAR too long already with NO medicine from anyone!!

*** "Anyone Positive for XMRV and just one co-infection" should be immediately eligible for 'Care and 'Caid/'Cal and compassionate care should be granted to them IMMEDIATELY !!. TOO many of them have been sick and denied any medical care or coverage for 20+ years due to lack of research, postponement of research, diverted research funding, esp. since a retrovirus had been linked back in 1990 and because the CDC chose to not pay for 2 plane tickets they shot down the research and let it die.. NOT Again. !! All care, all meds, all long term care and hospice, the same as the HIV/AIDS patients get. Deja VU all over again 20 years later ~ NOW on the 3rd Generation.. Shameful and WorldWIDE.

***$150 Million NOW, for research that includes the Whittemore Peterson Institute, of course, with "non-blinded" clinical trials of any patients that "test positive for XMRV and one-co-infection" ...paid for the same way HIV patients get their meds (whatever that is)...'Caid? 'Care?

**** "A Separate NIH SEP for XMRV and all it's

co-infections" is a necessity given the 30 year neglect that the CDC has given these millions of Americans, the fact that there are estimated to be 10 million asymptomatic XMRV carriers in the USA alone either donating it into the Public Blood Supply or passing it on via bodily fluids, that is IF it is ONLY Infectious and not Contagious which has NOT been confirmed YET. Get ME/CFS and XMRV "OUT" of the CDC... they can't detect anything.


*** For goodness sake's Educate the Doctor's that are ON the Front Lines as right now they KNOW NOTHING and all they do is want to give us anti-depressants when we are NOT Depressed, except for the ACT that they do NOT Believe us cuz NO ONE has Educated them... This was a HUGE Point made at the NIH State of Knowledge Workshop April 7+8th.


***Educate the Dr's that XMRV/HGRV's ARE indeed Retroviruses and they should have continuing CME Units Immediately REQUIRED so that they "do NOT tell" their patients that a "Positive XMRV Serology" means they do NOT have this retrovirus IN the DNA "For LIFE". Dr's should NOT give test reports unless they KNOW the Seriousness of what the heck they are telling their patients.. The peer-reviewed "Science" published paper that announced the CFS link with XMRV was in Oct. 2009, yet in Dec. 2010 my Dr STILL did NOT know ? Must they wait for a Personal Telegram ? In the USA I finds this appalling. Do they not have required Yearly CME's that required ?

*** This also is Important as it effects not only the adults but "the SICK CHILDREN effected" and being taken awake from their parents (which is SINFUL) but the (DSS) (at the age of almost 17 years old ) and placed in their custody in January of 2009.... because they they then blame the parents for Munchausen By Proxy when they have NOTHING Else to resort to and THIS is but ONE recent example even those they have even had Help from Dr. David Bell, Dr. Paul Cheney (25+yr EXPERTS in this disease) and after 25 years THIS OF> Proof that This is STILL going on and it MUST STOP !! My goodness, Dr. Bell went thru this back in the late 1980's and it took him 10 years of legal court battles to get back one child home to their parents and the money wasted was not spent to help the child's health in the meantime. Sinful. Because of Lack of Knowledge and education about this illness.
http://www.bringingryanhome.com/


Pres. Obama would YOU want Shasha and Malia taken away from YOU if they were sick just because the Dr's could not help them YET or had not been educated YET ? This IS INSANITY !!


***Given the Family Trees that are showing up now cuz we Literally ARE on our 3rd Generation of this set of neglected illness by the CDC that continues to tell us "It's ALL in our Head"~ Please have a look at what the first evidence of Family Tree medical history is showing re: descendant generations......

In each of the 6 clusters, the top 2 are the parents with the children underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM. Under each shape is their XMRV result. V= virus found in culture, 
Av = antibody test, NT=not tested


Family 1, upper left corner – One parent XMRV + for virus by culture and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent symptomatic. Child with Autism, XMRV + for the virus.


Family 2, top row, middle – One parent with CFS and XMRV+ for antibody. Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.


Family 3, upper right corner – One parent with CFS and XMRV+ for virus by culture. Child with Autism, XMRV+ for virus by culture.


Family 4, bottom left corner – One parent with CFS and XMRV + for virus by culture. Two children with Autism, both XMRV+ for virus by culture.


Family 5, bottom row, middle – One parent with CFS, Fibromyalgia and XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.


Family 6, bottom right corner – One parent with CFS and XMRV+ by antibody. Child with Autism, not tested for XMRV.


A quick summary regarding families. Confirmed here, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with Neuro-Immune disease amongst multiple members. Finally, that more work needs to be done to confirm pathogenesis and transmission.

*** "I'm worth more than $3.64 a year"

That was the TOTAL that has been spent on Research for the patients with ME/CFS over the past decade and until the patients got Vocal enough because it was costing our lives and families and countries TOO MUCH, we just FINALLY had the First Ever NIH State of ME/CFS Knowledge Workshop that show many of the FLAWS and Gaps and blind spots and ways that time and money has been wasted. It's TIME
to Get Serious President Obama.


STOP the Generations of Ignorance, Lack of Serious research, and to Help ALL of these people, Help get treatment for those with the retrovirus and Get the FDA to Pass Ampligen as it is our ONLY thing that has helped so far.. until someone does further Quality Research.. 
TOO Much time has passed.. 

This IS effecting the children...

What would The First Lady suggest be done I wonder ?

CFS History~
How an old disease got a New Name

Presidential Contact Info: 
Please use as many as you Can, OK? 
Put them IN the mail NO matter where you ARE
on either April 29th or May 1st, OK?


Mailing address:
President Barack Obama
c/o The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500


President's email: 
"Pres. Barack Obama" president@whitehouse.gov

White House Phone Number: 
202-456-1111 (EDT)

FAX: 202-456-2461 (24hours)

************************************************
reference articles:
(1) http://whitehouse.blogs.cnn.com/2011/04/21/obama-invokes-his-faith-and-a-g-in-nevada-town-hall/

(2) http://www.rgj.com/article/20110421/NEWS/110421028/Update-Obama-ends-talk-Reno?odyssey=nav%7Chead

http://www.enewspf.com/latest-news/latest-national/23735-remarks-by-president-obama-in-a-town-hall-in-reno-nevada.html

http://content.usatoday.com/communities/theoval/post/2011/04/obama-will-root-out-manipulation-of-gas-prices/1

http://blogs.suntimes.com/sweet/2011/04/_washington--i_drove_by_a.html

#112~ "If this was HIV, it would be 1983"

For those that do only have dial-up and can not watch videos I wanted to post the text of one statement that needs to be heard Around the World. I would like to also thank the person that did this transcribing and gave me permission to repost  it for everyone to read.. cuz this needs to be known.. 

I am one of the SeroPositive XMRV plus co-infection people that has been sick since 1987 and maybe before because I have NOT had any vaccinations since the 1970s and you can't grow antibodies to something you have never been exposed to.. so any lab contaminations that may have taken place after 1992 had nothing to do with my blood or what antibodies I have created. 


The fact that there are also now literally 3 generations of sick people and some have them within one family, and some even have adoptions so that would rule out bodily fluids.. so the Real Question here also is.. is this merely Infectious or also Contagious ???


And Now~ Here's Judy ♥ 
from the NIH State of Knowledge April 8th, 2011
*************



Mikovits: I would like to say that what I've seen here this week says that, clearly, XMRV at best, what we originally set out to do 5 years ago was a systems biology approach. We used those genomic technologies by Gene and Mary Carrington. We used a microarray from the NCI to screen all the pathogens. And what we saw was what we heard from Mary Schweitzer, that a lot of active pathogens and things like shingles, things like enteroviruses, things like EBV, CMV, HHV6--they're all totally on in that microarray. In NCI's infinite wisdom, it didn't put XMRV on it, so that's how we ended up going back. But we didn't look with a hypothesis for retroviruses.

We took the systems biology approach, collected samples from patients who had the well-defined characteristics that Tony Komaroff talked about and that were in the Lo Study and Dan Peterson had done--these patients--had data on them for decades. We took samples over three years. So it wasn't that we found the virus in every sample. It was like the macaque study, where it quickly went into the tissues, like the mouse study that came out this week that said the antibody responses were weak and transient. We don't know everything about this virus.

But HIV does not cause AIDS. The CDC definition is HIV and one of 25 co-pathogens. So the Lyme, the EBV, the enteroviruses, Martin Lerner's patients who don't get better with Valcyte. This is a reasonable hypothesis because we see the same thing. We've developed a cytokine signature that is distinct from Nancy's cytokine signature and from Ben Natelson's. So this is a marker to follow on clinical trial improvement, but there's no doubt these people are infected. With HTLV-1, if you're seropositive and you're sick, you can get some kind of treatment.

I'm not saying antiretrovirals. I'm saying immune modulators. So the patients that are found to be infected now--and there are thousands of them--need something now, not three years from now when Lipkin decides there is an association. Whatever their disease is, they're sick. And I know John--Chia--has patients who are co-infected and they don't treat the same way, so we can get together with the physicians who have co-infected patients. Even Lyme doctors, whom we are working with across the country. We can start doing something now. Take it out of CFS. It's not about CFS. It's about a retrovirus we don't understand very well. As Frank Ruscetti said at a meeting a month or so ago, "If this were HIV, it would be 1983." That's all. 
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Thank You Patricia Carter of the  http://www.mecfsforums.com/ for permission to repost this transcription for the World to read. ♥
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If THIS is not a Call to Help the Thousands of us that ARE sick and Need Help NOW I don't know what is... Thank You, Dr. Judy, for "Caring About us" and for taking on this extremely HARD job during these challenging times while 

"The Band Plays On"............................................

Next on Deck is the CFSAC meetings on May 10th + 11th and then the International Awareness Day on May 12th.

May everyone Please "Help Raise Awareness"  ~This YEAR, HERE and NOW ♥

If XMRV proves to be Contagious... you might be Next.


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#111~ Dear CFSAC~ One last time- Getter' DONE !

Dear Dr.'s Wanda Jones , Chair Chris Snell and all CFSACommittee members and attendees,

I HAD wanted to be Polite and respectful in this letter but the NIH meeting has brought out my "Outside Voice" 

cuz the WE patients are ticked off and as the Movie "Network" says~ "We are Mad as Hell and are NOT going to Take it ANY MORE" Got it ? Is that Clear ?

 

Do you need it in a few more languages ? Is everyone putting down the blackberries long enough to even read this??

Remember you ARE on Camera and all nose-picking Will be ( and has been)  observed.... Wake UP you ARE on Camera and this should NOT be another version of the World's Funniest Videos of 2011." 

I had been wanting to be in a Happy Mood when I wrote this letter but after the actions of Dr.'s Coffin and Vernon at the NIH State of Knowledge Workshop, I must say I am extremely Upset and in disbelief that #1~ Dr Vernon does NOT represent us in ANY WAY and the patients do NOT want her to utter "ONE WORD" to us or ABOUT US. Period. We have even created a Petition to that effect that has already gathered many signatures.. 

 

Who died and made her the MC at the end of the meeting ?  And she demonstrated her lack of courtesy when she was interrupting "what the viewing audience was seeing as a VERY Important discussion between 2 researchers"... How DARE Her ?

We have waited almost 30 years to HEAR these discussions.... Shame on Dr Vernon........... "Black Mark Given." by MANY !!!

Dr. Monroe of the CDC's  "poor Joke" at the NIH about not wanting to miss his plane was NOT Lost on the patients...

Especially, since it was the CDC that shot down Elaine DeFeitas in 1990 when another Retrovirus was in the early stages of being linked with ME/CFS.

 

Elaine made her BLT with Best Foods Mayo and the CDC decided to use Miracle Whip> Guess what> Garbage IN Garbage OUT> Then, they claim that "they can't replicate her findings".so... . She invites them UP to her lab to watch every step she takes.. and their excuse is that "they can't afford the 2 plane tickets to get up there." PALEESE... How Lame> When they ARE the ones that have the Name" Centers for Disease CONTOL and Prevention. Did they FORGET THAT ???

Hey, CDC, Dr Monroe, How MUCH IS YOUR LIFE WORTH? A plane ticket ???

Give me a fricken break.. and for THAT we go another 20 years without Help or Treatment ?

Right now the CDC is an acronym for us that stands for "Can't Detect CR*#" = until they start acting with INTEGRITY toward their citizens... They TRULY ARE a Worldwide Embarrassment to the USA.

And I am equally dismayed and repulsed and almost made physically SICK, by Dr. Coffin's wish to discontinue all XMRV Research... How DARE He...??
A REAL Research Scientist would WANT to Keep Looking > when they already have Thousands of patients that ARE Testing Positive, either by PCR or Serology or Culture and DO have antibodies and>  Hello many were sick before Dr Collins 1992 date, whatever that was about... We have been sick since the mid 1980's~ Was he NOT even listening ??? There are NOW 7 cohorts, in 7 countries that have tested XMRV+ from different labs... So his arguments are MUTE points... Maybe he needs to buy a Hearing AID> poor baby should we chip in to buy him one ??

 

I think NOT, he has wasted enough of our money and can't replicate anything because HIS fricken lab is the one that is contaminated..

I respected him in the beginning, but he has now lost all of our respect... Until IF and When he chooses to EARN it back...

by Continue Researching what we already Have> a retrovirus called XMRV, and starts doing the proper tests and using the proper proteins.

I don't think he had his hearing Aid ON "At ALL" during the NIH SoK unless someone other than Dr Judy was talking...

Not too much Prejudiced there, especially to have the cajones to call for Research to STOP when we are sick with it... Disgusting !!!

Maybe it is True ? That "That Takes Ovaries" and that is WHY Only Elaine DeFrietas and Annette Whittemore and now Dr Judy Mikovits been the ONLY ones to NOT worry about their cajones and have learned to Speak UP FOR THE Patients...

Which is what you, the CFSAC,  SHOULD BE DOING NOW.......................................

We are getting the feeling that either:

#1) "Some of these Researchers" do NOT Care about the Truth...........Thank you Dr Coffin> aptly named I might say.....

            Those that DO Care, we could Easily tell who they are and "We Thank Them Whole-Heartedly" ♥

#2) That our Government and this committee does not really care about us or the millions around the world being effected.

#3) that this government is being penny-wise and pound Foolish, because we DO want our Lived Back like Robert Miller Said and we would LOVE to be paying Taxes and helping the deficit.. but many of us because the lack of knowledge after YOUR and YES I mean ALL of YOU> is literally embarrassing and you have NOT Cared one iota about REALLY Helping us~ or you would have Meant what you have said and Done something about it !!! All we get here, until NOW,  literally IS Empty Words..

Where ARE your Consciouses ? You very well KNOW How sick we are and you Demand NOTHING >>>>>>>>>>>>>>

You KNOW as Dr.'s Leonard Jason and Chris Snell pointed out Extremely Well at the NIH> that we DO HAVE 

"Post Exertion Malaise".. that is a HUGE Part of what sets us apart from those that only have depression..
The Canadian Case Criteria KNOW it , We ALL Know it, Many Drs KNOW it, now its time for the CDC to KNOW it and OWN it, Period.

 

Was Anyone Listening ???? Did you listen about the OI/POTS parts that effects our Oxygen intake and our ability to stand UP ?? and YES>effects our hearts ??

I hereby not only request, but a an insulted 17 year hospital worker that had to quit my job because of this illness 

and now cant even get Disability because it took TOO Fricken Long to get a Diagnosis, which was NOT MY Fault cuz no Doctors have been educated about us,

but I DEMAND that this committee Send a message to the CDC in their STRONGEST Language to Cease and Desist with the infantile psychobabble that they have 

on their website about this illness and start acting and behaving like REAL Scientists and Take DOWN THAT "GET" junk that Physically HARMS our hearts and 

many of us have already had therapy because of the abuse of our Dr's and the CDC "not believing us" for 20+ YEARS... SO THEY HAVE ALSO INFLICTED

PTSD on many of us, Yet we Fight ON, because we KNOW the Truth and the world is also learning the Truth... that the CDC and NHS are Puppets

of the Psych Dept and the Insurance companies... We have had enough of this.. and you WONDER WHY our the Health Coverage in the country sucks ?

Emory University wrote a paper A YEAR AGO about those of us infected with XMRV+ and co-infections and What Meds would help us...

Where the Bleep are these Drug Trials ??? Magic Johnson is FINE on his meds and God KNOWS you are NOT letting us have any meds to get better so we can Have our Lives back and be Functional citizens again and get jobs and Pay taxes... What are you hiding ???Who are you covering-UP ??

WHY DO YOU WANT US to be SICK ? OH, so you can carry on this charade of doing non-relevant research for another 25+ years... WRONG !!!!

Like Dr Ruscetti said a month ago... If this were HIV this would be 1983.......

Wake UP>  The Band IS Playing ON......... and you are NOT getting us any help NOR cleaning the blood supply...

You should all be ashamed of yourselves that you have let this Crime against Humanity GO ON THIS LONG>...

It is now World-wide and not only within the confines of the USA.

I was was Proud working in a hospital for 17 years that REALLY Cared about their Patients like Dr Bateman does..

and like WPI and Dr Judy Mikovits do.... but I have seen NO medical ethics displayed here recently..

I have felt NO Urgency to Help those with a RETROVIRUS and co-infections Get Treatment... NOW

Shame on ALL of you>>>>>>>>>>>>>>>>>>>>

 

You are literally watching as Rome burns or better yet as this Holocaust plays out and kills another Generation...

We ARE on our 3rd Generation now and the Family Trees are showing up things like Lymphoma

and Autism..Breast Cancer and oh yeah >  Thanks My mom died from Lymphoma and I have XMRV...

 and you play your fiddles..... and yet YOU collect your pay checks..

GIVE YOUR PAYCHECKS BACK TO PAY OFF THE DEFICIT OR "DO SOMETHING TO HELP US" > NOW

YOU HAVE 2 DAYS TO GET IT RIGHT, THIS TIME... PLEASE....

EARN YOUR PAYCHECKS... Speak UP and actually DO something to get the Huge Ball Rolling to get the CDC off their Butts

and the FDA off their Butts and get us some Clinical Trials... We have "ToDo Lists" we are NOT simply depressed

like the CDC website seems to think.... That website is an atrocity...and an embarrassment to the citizens of the USA.

If they have NO Respect for us, WHY on God's Green earth should we Respect them ??

If they don't believe XMRV is Real ? are they willing to receive a transfusion of blood tainted with it ???

This ostrich game everyone is playing is getting really OLD>...Older than I am... and the World IS seeing Right thru it..

The DHHS>NIH can't Afford any Centers of Excellence> Hello> The WPI already Exists... Help them dang it !!!!

I also hereby "Officially request that the NIH Create an Additional SEP for the study of XMRV~ NOW" >
Cuz otherwise there is NO Place that Grants can be written and sent to study this,... unless they come in 

a back door thru some other of the MANY co-infections and that is BS> to the Hilt...

PLEASE Tell me> HOW MANY PEOPLE BEING SICK CONSTITUTE AND EPIDEMIC OR PANDEMIC ??
NOW answer truthfully here ??? Please....

There are at least 17 million worldwide in this new 21st, Airplane bug hitch-hicking era Century and that's

ONLY including the 20% that they say HAVE been diagnosed...

How about the Millions with Lyme that are testing XMRV+ ?

How about the 25% of Breast Cancer samples that are also testing XMRV+ ?

How about those with OI/POTS and XMRV ?

How about those with NO adrenal function or Thyroid function and XMRV ?

How about those on our Family Trees that now have Autism ?

How about all of the families brought to Bankruptsy trying to care for their "sick member" ??

How about the thousands that not ONLY do not HAVE any medical coverage OR Disability, 

but have NO ONE to care for them and are Bedridden ?

Is the USA ~ Really a 3rd World country again ?? 

That seems to be the way you treat your citizens...

Dr Jones, How much is your Life worth to you ?

Dr Snell, How would you feel if you were bedridden for YEARS but your brain STILL worked fine ?

Where are the "Job Fairs" for the bedridden ????

We can't get Disability cuz the Dr's didn't know what we had..

We can't get jobs that aren't scams from home in bed..

WHAT do you expect us to LIve on and How do you expect us to Exist ?

And we were Hospital workers, professionals, professors, etc, Please Help us..

Where is your consciouses ???

We Demand a NIH SEP for the Research of XMRV and all cohorts connected with it NOW< Period.

 

If you do NOT make this a recommendation to Sec. Sebilius than we WILL KNOW where the CFSAC stands

and how much they Care NOT about the thousands of us that are NOT getting ANY Treatment or medical care

and are being simply left here to die.... so put THAT on your conscious... OK ?

HOW MANY YEARS MUST WE BEG FOR THE SAME THING ??

Do your salaries NOT Pay you enough to Buy Hearing aids ???

At this point , I really do NOT give a Rats A*# where or How we got it, but we HAVE IT and are testing Positive for it and HAVE Antibodies> Hello !!!

YES OLD ANTIBODIES> so not obtained after 1992....capiche ??

Sick Before Coffin's 1992 date = a Mute Point..  What's your Next excuse ?? For NOT Helping us ??

Continue your other Research, but for Gosh Sakes,  "KEEP Researching the thing we ARE and Have antibodies for"  = DUH 

The poor Medical MDs that that you put on the front lines to treat us are the ones that catch ALL of the FLack ALL Year Long...

SHAME ON YOU> EDUCATE THEM... WITH OUR BIO-MARKERS SO THEY CAN KNOW WHAT TO TEST FOR...

 

My CD4CD8 is off and backwards, I have had HSV since I was 5, had EBV/Mono when I was 19, but to went away

and I was able to get married and work in the hospital for 17 years until I had my Triggering Event...

I had  HIGH Fever "Sudden ONset" with a low grade fever that last for over 2 years....

I was on the couch living alone during that period. I could not even go to the hospital to say Good-bye to

My closest thing to a sister that was dying from AIDS as NO ONE could tell me what I had...

My EBV at the tome was very LOW> so NO it was NOT EBV> Get it ??

It had taken me 23 years to even obtain an written letter from my Dr that says I have > OH yes..  CFIDS and it is Spelled out... as well as OI< but she forgot the POTS part... and YES I have my own BP cuff and I use to work in a BP clinic, so I know how to take it. My thyroid gland is shot and so are my adrenals now.. so I must take expensive meds to supplement what my body can not make.... Where is ANY Mention of the deterioration of the body that THIS ILLNESS COSTS us so we can KNOW "what NOT to do" or "What to do to Help ourselves" = NO Where !!!

 

If you had DONE or Listened to Elaine DeFreitas maybe many of us would NOT even BE this sick now...

So you NOW have a Second  Chance to get it Right... Your Center of Excellence is WPI>

Get that through your Brain Please.. They are the ONLY one to already be using Translational Medicine

which Dr Vernon to her detraction, tried to adopt and claim and a New idea, when WPI was already set UP that way 5 years ago !!! Vernon, maybe YOU need some Hearing Aids also, cuz we will NOT put up with your Revisionist History either.. capiche ???

Vernon talk about Everything that XMRV has done to bring ME/CFS into the Light of the Press and Scientists was done by the WPI not simply XMRV... sheez.... XMRV did not research anything. XMRV did NOT bring together the NCI and Cleveland Clinic, and it was the WPI that with them got the Science paper Published.. Vernon you can NOT claim what is not yours and you jealousy of them is showing as Green and your lack of knowledge and Expertise...

Last time I wrote you, I thought it might be my last, but NO Thanks to YOU I have found HOPE in WPI and learned a few things to help and my money has not quiet run out YET
so I am not on the streets YET, but I do NOT have enough to last until I am 66, so I will either die, or get meds, or lose the house I PAID for like a good citizens, and will probably have to go live in my trailer God knows where cuz I can't even drive to pull it anymore.. I use to travel to do my Nature photography in it.. to take me away from the stress of the  hospital politics during the early days of HIV and AIDS....

but here we are again.... "And The Band PLays ON... 

PLEASE REMEMBER THE

WORLD IS WATCHING YOU AND ALL OF THESE MEETINGS AND THEY KNOW  WHETHER YOU CARE OR ARE ACTING SPINELESS.

 

For God's Sake DO something to Help us... Help those NOW that are XMRV+ Plus co-infections and Please get the Psychobabble OUT of the CDC's website and let's start acting like Adults here and Clean the Fricken Public Blood Supply NOW> NOT Years from now.. 

You are continuing to commit Crimes Against Humanity by your "Lack of Action." Period.

Own your Cajones or Ovaries and STand UP for what is Right... This Time NOW

Even Dr's Bell's Lyndonville kids tested 70% Positive for XMRV~

You want our blood FINE we'll donate it to you Personally~

You ARE Taking our lives... so what else do you want ?

We will NOT shut up for you or anyone at this point...

We have had enough > Got it... 

We will speak up until our dying Day or until you get us some Meds to Help us  as you are suppose to do !!!

It's Your choice... Give us Meds and DO More Research including a SEP for XMRV or we WILL start being heard in more ways than Egypt planned for...

Many around the world are not taking what is handed out bay their dictators any more and you have been not representing us effectively for the last 20 years.. nor the CDC/NIH for the last 30 years.......while "The Band IS PLaying ON>.

So HERE"s your chance NOW> Do it and show us what you are made of....

Cuz your actions will show more than your mere lip service

that we have been getting for decades.. while children die and the 3rd Generation gets infected...

WAKE UP and PLease SPEAK UP> NOW

The world is watching you and what you say and DO.............

Sadly, I remain,  w/o hope unless you create a XMRV SEP and get us Help........

I might remain a while longer but I will NOT go down quietly and will broadcast to everyone, everything this government, AND every other Gov't  has NOT done to take care of this NOW worldwide PANDEMIC. Wake UP !!

I had the Test, Now I need the meds..........

"Kill/Incapacitate the BIG BUG, then deal with the co-infections"

or does THAT make TOO Much sense ?

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