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Sunday, April 24, 2011

#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.

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"

White House Phone Number: 

202-456-1111 (EDT)

FAX: 202-456-2461 (24hours)

reference articles:


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