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Showing posts with label Dr. David Bell. Show all posts
Showing posts with label Dr. David Bell. Show all posts

Friday, March 11, 2011

#106~ Beyond "Coffee-Talk" Time



"Brave are simply those with the clearest vision before them and not withstanding the  obstacles go FORWARD in the direct of their goal."

I have read numerous posts, comments, and now blogs that have disturbed me lately, yet a few had a grain of inspiration in them. I would like to cover a few topics in this post that have been brought up recently.

In the USA, the DHHS, NIH, CDC, and FDA have let us down as citizens for the past 25 years. ENOUGH is ENOUGH.
Let us take a lesson from the cyber generation that has emboldened the youth of the world that DEMANDED "Respect AND Accountability" from their Governments OR those NOT willing to be accountable MUST GO. PERIOD.





After watching the events in the Middle East during the last few weeks, it makes me even more committed to us working as a group of united individuals as strongly and constantly and persistently as we can, but to also stay non-violent in our verbage. I feel like we are also Egyptians/Libiyans that have been held in prison for 25+ years and are fighting against a dictator that rules our lives....

The Middle East is now venting 40 years of pent up emotions on many levels in many different areas of their Governments and they ARE getting results.. How many years have you had bottled up ? Do you NOT think that "Holding IN that Anger" has not hurt your health ? It is NOW Time to go "Beyond Coffee-Talk" and make sure our government agencies and individuals HEAR US LOUD AND CLEAR. But PLEASE ~ Speak from your Heart, let them know you are NOT going to take it any more, that they ARE and WILL be Held Accountable and do NOT Threaten anyone, whatever you do, OK ? Keep a copy of every thing you send so you have PROOF that you were NOT being threatening and were ONLY speaking from your heart. The Cancer INSIDE our Very own Health Agencies MUST STOP !!!

 The Republicans want to save $100 Billion dollars, OK< just our ONE illness (ME/CFS) not even accounting for the costs of how XMRV is in reality undermining our immune systems and thus laying us OPEN and Vulnerable to MANY Diseases and Cancers, just like a house built on sand> like in Haiti does NOT Stand, We DEMAND our Government that has effectively DENIED us "Equal Health Representation" for the last 25 years NOW and IMMEDIATELY "WAKE UP" and acknowledge that their sleeping at the wheel has not only cost us 20+ years of our tax-paying lives, but is also NOW at this time costing OUR Economy $20 Billion a YEAR and "It is Now Time" for them to Validate this Pandemic and Stand UP to this and the other diseases in our complex and HELP US "RECLAIM OUR LIVES" so we can NOT ONLY "Have our Lives Back, but also become tax paying citizens again which will help the economy, Period." Their lack of accountability (please do NOT forget that Pres. Obama was the FIRST to add the cost of the 2 Bush wars INTO the Budget, previously they were NOT added.) Talk about previous lack of Transparent Accounting ???  If they had been Encouraging Proper Research on MANY Levels not just psychological  we would be reaping the benefits of that research NOW instead of being further in the hole. Their FAILURE to do so is COSTING not only our lives but our economy.

I have always Voted for the issues and the person, NOT by any party... What is going on NOW is making me even more  Happy that I have had this mindset, because NO one Party or even Patient Org. has ALL of the Answers.. We must BE "Informed Citizens AND Informed Patients" if we expect to STAND UP for OUR Rights on ALL Levels and Hold ALL of them Accountable. So that is why I feel I have the Right to mention any party or org in my blog because I will take the Best ideas of all and I will reject the bad Ideas from all... That is part of critical thinking.. Do not accept anything ANY Group says as Gospel and ingest it like pablum. Question EACH item and research it or as one of my grade school teachers once told me, " You do NOT need to know all of the answers and are not stupid because you do not know all of them, BUT, be sure to at least KNOW where to go to get them." THAT is the Strength AND Beauty of all of us Patients and Patient Advocates because we CAN help educate and Inform each other so that we CAN Speak with an Informed VOICE and Speak in LARGE Numbers..  WHO says AARP is the ONLY Loud Voice  to be Heard in Wash. DC. We CAN be the same way if we mobilize our laptops and computers and our networks amongst us....  

 
I also have been questioning why there is not a SEP or place where XMRV grants can be submitted to for approval. ME/CFS or whatever name you want to use aside, isn't XMRV already  linked with prostate cancer and lymphomas also, with suggestions of a 25% link to Breast Cancer and a much larger link to Lyme ? Why is there not a place to study this new retrovirus ? Since there are so many of us are testing positive for it, maybe this should be one of the issues we jump on to and campaign about. just a thought..

All I know is that we MUST start getting more focused and pick out targets and then act up in as many legal ways as we can, and I know there are many ways we can do this. We just need to make sure that no one flies off the handle and starts using violent threatening verbage. They seem all too willing to throw the baby out with the bath water.


"Why Movements FAIL"
A dozen people complaining with a dozen people defending is not a “movement in a world wide forum." Perhaps ME/CFS has struggled because we are not as united as a community as we would like to think. Perhaps our elitist attitudes, our groupings, our unwillingness to co-operate and work together for the greater good keeps us from embracing “community.” If we are not willing to get the information out there, to work together, to involve everyone …. then factions who decide to play with us and destroy our hard work and thumb their noses at the reporting process succeed not because ME/CFS is such a failure … but because WE are. (1)

*YOU are as STRONG as YOUR WILL to be Heard.*

The DHHS, the NIH, the CDC and the FDA have been charged with caring and guarding the Health of the  People of the USA and Preventing illnesses. 

They ARE NOT doing that. They are and have been part of a GRAND Cover-up that includes inept sloppy redefining our illness so it does not even resemble our original illness, but also sloppy research that is trying to undermine now the 3rd Human Retrovirus that IS in ACTUALITY "In the USA Blood Supply. Period

Speaker of the House of Rep. Boehner claimed on 'Meet the Press', Sunday Feb 13th, 2011, that "he wants to hold his members to the HIGHEST STANDARD."
I respectfully say, Bull Poop, unless he ALSO acknowledges that he is PART of the Government NOW that is he is actually effectively NOT Representing the MILLIONS and their Families that have "Fallen Thru the Cracks" of this ineffective penny-wise and pound FOOLISH attitude to Health + Disease Research. Unless he is part of the Solution , He is INDEED PART of the Problem.
Trust me, if one of his family members had Cardiac Dystolic Dysfunction caused by ME, which was an opportunistic infection that they have because they were XMRV+ the Research would be ON THE SCHEDULE

Egypt went thru 30 years of being ignored by a Dictator with a Police State. We, those with Chronic Fatigue Syndrome (Known in the REST of the WORLD as Myalgic Encephalomyelitis), or Lyme, Atypical MS, Prostate Cancer, Lymphoma, HHSV-6, HHSV-7, Cytomeglovirus, have also tested Positive for many other tests, when our Dr's and coverage would even run the tests, such as abnormal Holter Monitor , VO2 MAX, Thyroiditis, EBV, Low Natural Killer Cell Function, Abnormal SPECT Scans, and NOW to make matter WORSE ~ MANY of us are testing POSITIVE for the 3rd Human Retrovirus called XMRV. (2)

There is no HISTORY of our disease besides CFS, that CDC or NIH has "EVER" been recognized.  You can find a sentence stuck in here or there about M.E., but the SCIENTISTS and policymakers don't believe in it.  Except, of course, for psychobabble.  It's not just XMRV.                       We can't even get funding for HHV-6 either.

Right now, "THERE IS NO FUNDING CATEGORY FOR XMRV."  Period.

If you were Appalled at CROI Conference as Many of us were the please Help us and Demand "CROI-AIDS 2.0" aka for XMRV.
Do you REALLY think there is a Legit reason for them ignoring the 3rd Human Retrovirus, when the scientists are SO Scared that they are testing themselves for it ? Seems to me someone is working "awfully HARD" to cover up something here...

Conference Mission
"The mission of CROI is to provide a forum for basic scientists and clinicians to present, discuss, and critique their investigations into the biology and epidemiology of human retroviruses and the diseases they produce with the ultimate goal of translating laboratory and clinical research into progress against the AIDS epidemic. "

Dr. Jamie has already explained HOW all of this most likely happened...
The cat is clawing its way OUT of the Bag...
It's TIME for the NIH to "Get REAL" about this Retrovirus and Take it SERIOUSLY~
The CDC + UK MRC have a LOT to be worried about NOW...

http://treatingxmrv.blogspot.com/2011/03/cover-up-and-contamination-theories.html

XMRV and Family will NOT QUIT and Neither will WE or WPI.

The NIH State of Knowledge Conference meeting in April will show the colors of the NIH and then we will know where to expend our energies at that point. Here is the supposed agenda.
State of Knowledge Agenda
How it pans out will let us know where we stand. 

Please do NOT Wait to start your Letters for the CFSAC..
Please start gathering your thoughts NOW, because by the time the SoK is finished we will either be Very Happy OR Very Angry... Either way we ill have, I promise you, expended a lot of adrenaline and energy and many will crash. The due dates for our CFSAC Letters will be published about the same time and if we are crashed we will NOT be able to think clearly.. so Start NOW, so you can already have MOST of your thoughts ON paper/computer and then they will just need last minute tweaking before you sent them in "in time." OK ?

For our one disease alone, that the government is ignoring and underfunding research, the numbers are getting staggering. In effect, we ARE Indeed the New form of "AIDS 2.0" patients ONLY we are in that phase where our Government HAS NOT BEEN WILLING to do the REAL "Quality-ERROR FREE Research" and collaborate with the Researchers that HAVE Excelled in this Research, such as not only their very own branches of the National Cancer Institute, NIH, FDA, and the Cleveland Clinic, and the private Whittemore Peterson Institute.

Many of us that had Wonderful lives before we were stuck down with these illnesses were living Happy lives, contributing to Society and many were Doctors and Teachers among other leaders and active honorable tax-paying citizens. Now not only have our LIves as we knew them been wiped out in heartbeat, but so have our careers and incomes and our abilities to pay taxes. HOWEVER, Try as they Might~ The days of ignoring us and trying to demean us and undermine our UNITY as MILLIONS of wronged citizens that have been FAILED by our country is coming to an end. We have WORTH. We DEMAND "Proper Representation."

Since the Governmental health Agencies have ignored all of the diseases that are showing up to have XMRV+ in common... will YOU or ANY Scientist PLEASE Tell me what other discovered Retroviruses have been shown to Cause HEALTH ? This is flatly absurd. The list of associated diseases is growing weekly.. as more studies are being done.. The diseases downline thru the familial family tree is growing exponentially. We now have people that are XMRV+ that have Prostate Cancer, ME/CFS, Lymphoma (from which my mother died), Autism, Atypical MS, Lyme Disease, and even Breast Cancer. How many more Diseases need to be linked and how many more bio-markers do we need to  have for this Government to STOP abusing our Civil Rights and to DO Their Transparent DUTY by Funding STUDIES for this 3rd Human Retrovirus ?  To date there are approximately 17 million ME/CFS patients worldwide and that is NOT by using the Reeves CFS definition. I can not even begin add up the numbers of citizens whose lives,  jobs and quality of life are being effected by the other diseases already linked to XMRV.

We WILL ACT UP in our own ways, our version torn from the pages of the ACT UP History lessons ESPECIALLY as we have been using our INSIDE VOICES > "UNTIL NOW" as we have playing "sweet and nice" for 25+ years and it is getting us NO WHERE~ Enough is Enough.  ENOUGH IS ENOUGH. The Governmental agencies by their lack of integrity has left us NO CHOICE but to not only Speak UP for ourselves, but also for the Public Health that they are now and have been endangering.. AND FOR OUR CHILDREN AND FUTURE GENERATIONS, just as the HIV/AIDS activists did for us.

The Congress is worried about the deficit. I am worried we will not be ALIVE to be worried OR Fix the deficit.

The USA and UK Governmental Health Agencies, and the other countries that look at these two to follow, are undermining the Health of the Millions of Americans and citizens worldwide, and we are literally talking about it being the 3rd generation of these illnesses that is now mutating and causing even more new illnesses that will cause more grief, family destruction and economic hardship to the  people and countries of the world.

It is TIME "Our Activism" GET SERIOUS ~
Gang of 25+ years> Take a fricken' lesson from the younger generation..
Younger generation>  the Long Time holders of History of these sins of the past "CAN be Valuable Resources to you," Please --> TEACH THEM "How to Tweet" and use the newer Social Media, if they do not know HOW. Teach them How to do an online Fax.

Hello to those younger that are relatively NEW to This Cause > The bedridden Gang of 25+ years are the experienced folks that KNOW the History, but YOU still have the strength to HELP "Save YOUR Futures." We can work together.. We NEED to UNITE and form a Real COMMUNITY. Get your Families and Friends that Care involved NOW. The Gang of 25+ can do the CFSAC "call-in" testimonies, and YOU the younger generation are the ones that MUST attend the meetings IN PERSON for us  and speak in Person, Hold the signs and wear the T-shirts. Stand UNITED Behind those that are speaking and REMAIN There.. As long as you are quiet and still, but SIMPLY within the camera view, you are not doing anything illegal and you have a Right to Show Support for those speaking for you. Learn from the Brave HIV/AIDS "ACT UP" generation and the citizens of Egypt that stood UP 'peacefully' to their 30 year Dictator with the Police and Military ready to END Their lives. How far do you think the CFSAC will go that far to Silence us ? 

We will form our OWN "Tea Party" for the lack of a better name, and we WILL FIND a Better Name, trust me.      Maybe the "XAND Tea Party" ~ taking suggestions.. Please....

I  hereby SUGGEST that WE Design a FLAG to represent our XAND Cause, (for lack of a better name~ suggestions PLEASE) since it is not only a female or male or straight or gay or adult or child, but a HUMAN PANDEMIC that I feel we NEED a Flag so they will KNOW us by our Flag.. and then any individual or .org that believes in our cause when they are speaking about our illness, not necessarily FOR any of us, but expressing THEIR opinion about OUR illness and ANY injustices that need to be addressed or during any XAND ACTUP Actions anyone may display this flag... So Let's UNITE Behind a FLAG that will represent ALL of us.. with ALL of our Invisible Diseases that OUR Government has ignored like they did HIV/AIDS for the First 5 years until they Started ACTing UP !! anybody Game ? I would be willing to work with anyone to help create a Flag that we could them printout, maybe a few can sew a BIG ONE, make banners, what ever we can think of.. Put it on stationery, on our Faxes and emails as jpgs, etc.. Let's CREATE our OWN BRAND that can be used Worldwide, OK ? So ideas from around the world will be accepted. I want this Flag to be as well known as the Rainbow Gay Pride Flag, OK ?  What can represent all ages, sexes and nationalities ??? Help me here Please..... I KNOW we have many Beautiful CREATIVE Brains out there... Some are good at letter writing and some are good at artistic things. Let's all work together to RAISE AWARENESS and use the Best of EVERY Person and .Org out there.. We will be dictated to by NO ONE, but we WILL UNITE to create the STRENGTH in NUMBERS as Individuals, across 3 generations around the world, that is needed to do things en masse "that will be required" to get this job done. If Not NOW, WHEN ?

I here by Put a Call OUT to all Tweeters and Facebook members to start making a List of All and Everyone to which we need to get our message. Whether they be a Political Person, a Celebrity that has Hollywood that has experienced the devastation of HIV/AIDS, or some PR folks, basically ANYONE in ANY walk of life that you feel could or may listen to anything we have to say~ even if we are just informing them.. Maybe along the way we might Find someone willing to Get some Extra PR that does not have a CAUSE yet to garner them more PR and we can find a WIN/WIN that would serve BOTH of us.. Then make a list of all the FB users that ALL of us need to Friend that are movers and shakers and Celebs that might need a CAUSE or that have sympathetic ear.. Every Celeb needs a Health CAUSE to get GOOD PR nowadays.. "it is the IN thing" ... Let US be the latest IN thing.. Help us CREATE a list. Then we can work on Tweet & Facebook Campaigns. Put all of your lists on an easy to create a blog and then send me the link in a comment here and then we can ALL disseminate the list for everyone to use.

I respectfully request everyone write a letter to the NIAID requesting "studies of XMRV+ patients"- NOW,
"NOT After" millions more have died and lives, families and economy are even in worse shape.
Here is a quote from their letter below:

"NIAID is soliciting input from the infectious diseases research community to help identify potential high priority research areas to be addressed by the NIAID Leadership Group for a Clinical Research Network on Infectious Diseases other than HIV....it should address high priority research areas that are opportunities not presently addressed by NIAID’s infectious diseases clinical research portfolio and that would be accelerated by a multi-site clinical trials network. Currently, NIAID supports a wide variety of infectious diseases clinical research activities in areas other than HIV." These activities are described on the NIAID website at the following link:

http://www.niaid.nih.gov/about/organization/dmid/clinical/   ;                
a more detailed listing is available by request from DMID
(send email request to: NIAIDClinicalRFI@niaid.nih.gov )
Let's make the PROVE that they "support research in areas other than HIV and make them GET BUSY."

Topics they would like you to cover:
~high-priority research areas (e.g., pathogen, disease, syndrome) and rationale for their high priority
~examples of potential studies and intended populations within the research areas proposed.
Please mark responses with the above RFI identifier (NOT-AI-11-029) noted in the subject line.
Responses will be accepted through April 4, 2011. Please limit each response to two pages. " (3)
*******
30 min talk by Dr. Eric Klein, & Robert Silverman MD. ~ Please watch and Listen (5)
*Eric Klein's speech in front of the president and secretary of state, regarding XMRV and prostate cancer. From Feb/March 2011, but a very compelling video, with many juicy quotes that can be used.
Snip-its from the above~
MORE XMRV evidence:  "Only the 3rd Authentic retrovirus to cause infections in Humans." endQuote !!
"Viruses cause Cancers and Neurodegenative Diseases."
"XMRV= It turns ON a cellular oncogene" to cause Cancers !
"It is a Genuine INfectious Agent"
"XMRV CAN be transmitted by blood or transfusions"
"The research can not YET prove that XMRV causes cancers, but the Research CERTAINLY Points to that direction."
**********************
WHY are ME/CFS and XMRV still so Under Funded ?
According to the National Institutes of Health, ME/CFS is down for $5-million in 2011, and FMS is getting $12-million. Compare that to multiple sclerosis (MS) -- $144-million. Even Tourette syndrome research is better funded than ME/CFS. (4)

I would like to suggest that EVERYONE start composing their letters for their CFSAC Testimony NOW including a HUGE section about the CDC and their history of not only the insulting naming of our illness which is NOT accurate, in which they have over the years continually changed it to fit their whims without even giving due consideration to the REAL symptoms of our illness but simply broadening it to include simple depression which the chronically ill have, but is MOST DEFINITELY "NOT" a Cause of our illness and is not the MAIN VALID symptom of it either.... and was NOT there as a symptom when the illness started. Additionally, besides the current on-going scientific and court validated P.E.M. research that has been taking place at the Pacific Fatigue Lab, which is part of the University of the Pacific in Stockton, California, and whose own Chris Snell, PhD. is the current Chair of the CFSAC, we NOW have an additional study that has come to this conclusion. This MUST be acknowledged and recognized.


"The experiments reported here show that 25 minutes of moderate exercise generates large and rapid increases in gene expression in leukocytes of CFS patients but not in control subjects. Increases in mRNA were found for genes that can detect increases in muscle produced metabolites (ASIC3, P2X4, P2X5), genes that are essential for SNS processes (adrenergic α-2A, β-1, and β-2, as well as COMT), and immune function genes (IL10, and TLR4). These findings confirm previous hypotheses suggesting that alterations in all parts of the HPA axis may mediate and sustain the symptoms of CFS and FMS. These gene alterations suggest a potential role for alterations of peripheral sensory signaling in the symptoms of CFS, as has been proposed for FMS. They also suggest that a blood test could be devised as an objective biomarker for sensory muscle fatigue and muscle pain in CFS." (Complete link below) (6)


The CDC has NO Factual Legitimate REASON for excluding P.E.M. as one of the Hallmark Symptoms for CFS ANYMORE and according to this latest study also includes FMS. It is TIME for them to hereby QUIT their FALSE psychobabble because here are NOW Legit studies that this HAS testable legit biomedical markers and this pain and P.E.M. is indeed NOT "all in our heads" BUT in theirs, and furthermore GET will NOT help eliminate any of these symptoms, so get them OFF the dang website and suggested treatments because they will actually are hereby PROVEN to actually HARM US. And CBT is absolutely different than regular pain counseling or counseling to deal with ANY chronic illness that could leave ANYONE with a chronic illness depressed, but OUR ILLNESS is NOT Depression. If anything has caused ANY of us to be Doctors and Governmental Agencies that have taken our taxes for the many years we did work. They KNOW the new UK PACE Trial results are as our UK friends would say is a "bunch of bullocks." Those of us after many years already have cardiomyopathy from the dyastolic dysfunction that has resulted in OI/POTS and Hello ~ that is HEART DAMAGE and Exercise and Lack of oxygen to our brain and heat WILL KILL US ~ PERIOD.


I  request that EVERYONE start making A LIST of companies that are advertising in ANY Online medical article in any publication ANYWHERE in the World that mis-speaks the TRUTH about our illness, will NOT correct the mis-naming of our illness, eg. like that ABC.go, the many UK articles, etc.. This MUST STOP, and their Advertisers MUST know that we will Boycott their product if they do NOT make the Publications they advertise in publish CORRECT Information. Editors are suppose to screen the info BEFORE these things are Published. Period. Let's gather the info: name of publication, date, incorrect info, make a screenshot of it, note the advertisers, and send them to me. We will in the meantime form a committee of folks that are good at letter writing and we can then start Petitions to these advertisers/publications with our request  for their INFO to be retracted and corrected or we WILL Boycott their products and blog Around the world about not only the publication but also the advertisers that pays this publication. Most of these companies are Worldwide now so we can maybe have letter writers to create and speak to the specifics in each country so we have our facts CORRECT, but the campaign and boycott will be worldwide, OK ? Ideas to clarify this "Mis-Information Campaign" and it's strategies are also VERY Welcomed and desired.


We have just had a week of some great inspiring articles published that should give you all plenty of enthusiasm to help 'kick start' your letters and get your juices flowing.. Please USE that Positive Energy to start working on some of these ideas and gathering information and making notes for writing your letters not only to the NIAID, but for the soon needed CFSAC letters, OK ?I only mention this so we can start now getting organized and start planning our next CFSAC campaign which IMHO should  be the CDC, since the CFSAC members want to target them this next meeting anyway. I know I need to start my testimony now, cuz after the SEP results and the NIH results, I will be so exhausted I will not be able to compose a cogent pointed argument for my CFSAC public comment.


Amy Dockser Marcus WSJ article
                                                                                                                      http://online.wsj.com/article/SB10001424052748704005404576176823580854478.html

Leonard Jason's WSJ article 
                                                                                                                                                    http://online.wsj.com/article/SB10001424052748704507404576179031979295592.html

David Tuller's NYT's article
                                                                                                                                                  http://www.nytimes.com/2011/03/08/health/research/08fatigue.html

I hope you also WATCHED the video about Dr Bell's, Lyndonville kids, that 70% of which have already tested Positive 25 years later now XMRV+. Please WATCH this basically 4th study that validates the Original Science findings.. 

The video may disappear in the next day or two so Please watch NOW> OK?
AND get everyone you know that has NOT YET seen it to watch, Family AND Friends, OK ?                                                                           
http://online.wsj.com/video/rural-ny-town-becomes-chronic-fatigue-laboratory/D80B17A7-B6C5-4B33-8356-F92C8751A93F.html

CFS + Lyme :  "spinal fluid" 
                                                                                                                                                 http://blogs.wsj.com/health/2011/02/23/a-step-closer-to-tests-for-chronic-fatigue-syndrome-and-lyme-disease/ 


 


Hemispherx Biopharma Announces 9th Clinical Investigators Conference: Ampligen Clinical Trials Highlighted

Conference Explores Potential Relationships Between Chronic Fatigue Syndrome (CFS) and a Novel Retrovirus

article link in full below (7)

 *******************


We are also gearing up for all of our Annual May 12th International Awareness Day Campaigns that will include MANY different activities on all levels, something for everyone from Tweeters, letter writers, on location demonstrators in the USA and UK capitols and others around the World. Please gather ALL of the ideas you can make note of from the Forums and Facebook and email them to me so I can post about them and you can then know about everything that everyone else is hearing about, OK ?  We want this one to be a BIG YEAR and we want them to HEAR Our OUTSIDE VOICES... 
Send your emails to <mecfs may awareness month at gmail.com> OK ?           
I will gather them and keep you informed of everything I receive, OK ? 
We EACH will have our own little part to do "to pull off" this HUGE May 12th Awareness World wide EVENT, so let's Agree to AGREE to Help INFORM each other, OK ?  I will NOT "Judge" the Pros or Cons of any planned Action.. I will simply report them to you and you can choose which one/ones you want to participate in, OK ?

I would like to apologize for not blogging as much recently, but I have been reCouping from a really BAD Crash that also Flared EVERYTHING and it has taken me longer than usual to slowly regain some strength and any stamina. Sometimes trying to stay "on top" of everything ~ we that are 24+ yr XMRV+ ones tend to pay the price when we over-do our enthusiasm even when it is only from bed on a laptop.


Hope that you will ALL in the USA, except AZ +HI, remember to change you clocks this Sat. nite as Daylight Savings starts this weekend. Color me HAPPY. Maybe we can get outside and even just sit in the sun for 15 minutes a day and get some "natural" Vit. D that we all need SO much... Meanwhile, Please take care of yourselves and make notes when ever you feel a little moment of clear-headed Inspiration, OK ?


Happy Thought for the day: At least I don't have to fill my bed tank with gas/petrol at these prices~


Hugs and love + kindness to you all...

whether you are still buried in snow, helping your neighbors after a flood, fire, earthquake or volcano, we send you love and Positive thoughts everywhere



PS: Thought for the week~
"Brave are simply those with the clearest vision before them and not withstanding the  obstacles go FORWARD in the direct of their goal."

********************************************************************************************
(1) "Why Movements Fail"
http://womenwhodancewithfrogs.com/2011/03/05/why-movements-fail/

(2) Mary Schweitzer's Blog~"Slightly Alive" re: Civil Rights from Today ~ Please READ:
http://slightlyalive.blogspot.com/2011/02/civil-rights.html

(3) NIAID Announcement Please READ:
http://grants.nih.gov/grants/guide/notice-files/NOT-AI-11-029.html

(6) "Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects"
http://www.ncbi.nlm.nih.gov/sites/ppmc/articles/PMC2757484/

(4) Underfunding of Fibromyalgia & Chronic Fatigue Syndrome Research
http://chronicfatigue.about.com/b/2011/02/09/underfunding-of-fibromyalgia-chronic-fatigue-syndrome-research.htm?nl=1

(5) Dr. Klein's talk ~ Enjoy !
http://webcasts.prous.com/webcast_viewer/preview.aspx?enc=q1jaeoTahUQpJdbzgTeEs8xcC6zOxanITToOP4sn+Gq2PkGuHyMqxHqtCAyjU/yO30ZRmDV/fspBfPMn3C0veXmtp3aYSa+82YiVh/Zzgxce7O0caInZp8x1BlrXwMxu1qwE1eVOlUxVQXZXkecU7SwqWKNo49bPkQ60C1rTMvQ=

(7) Hemispherx Biopharma Announces 9th Clinical Investigators Conference
http://www.globenewswire.com/newsroom/news.html?d=215608


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Tuesday, December 29, 2009

#46~ HERO of the YEAR - charity & research



As we end~ this 1st decade of this new 
millennium I would like to Dedicate this
last blog to a Charitable Organization
that has been the Source of MUCH
HOPE and Research News during this 
last year.... They get my 
"HERO for 2009" Award.... the 
Whittemore Peterson Institute
located on the campus of the University
of Nevada at Reno. 

Within the last 4 years "from an idea 
to formation" to doing actual
*Ground Breaking Research* solely with 
Private donations and grants has been 
nothing short of a Miracle for "more than"
28 Million people Worldwide.. that 
suffer from neuro-immune diseases
and have been "be-littled" and told these
illnesses were "all in their head" 
for YEARS.

The WPI's discovery of the link between
ME/CFS and XMRV- the ONLY 3rd known 
Retrovirus to effect humans, has effects 
and ramifications that HAVE YET to be felt
and dealt with around the world. 
EVERY Countries' BLOOD SUPPLY needs 
to be "screened" for this, ASAP !!! just 
like they are for HIV, the last retrovirus 
discovered that also effected 
immune systems.

I watched the online webcast of the 
NIH- CFSAC meeting at the end of Oct
and cried with Joy and Validation along 
with 400 others from around the world 
as we bonded LIVE via Facebook...
We even, for those that could not 
view RealPlayer, had to do a sports-like
play by play report of what was taking 
place. We watched Dr. Peterson's 
Presentation and Annette Whittemore's
Testimony on behalf of the millions
of us that have suffered with it for 
over 20 years , not to forget the many
that have already passed away because
they could not take any longer the 
disgrace & stigma the CDC has labeled
us with and the financial & emotional
ruin this has caused many families...


Dr Bell's testimonies of what families
that had young children with this and 
their families went they as they could 
NOT Dr's to validate their illness and 
thus cause the families to resort to be
submitted to the Family Social Service 
System and go to Court to be able to 
even KEEP their own children, was just
literally appalling...and took some
families UP to 10 YEARS to settle
these cases... THIS HAS to STOP NOW !
In the USA this is a Total disgrace.



I am chosing this time also to write 
this particular blog topic, in memory of 
my stepdad that at the end of the year
always wrote out all of his donations to
charities that he wanted to donate to that 
year..so it could be listed as a 
"charitable deduction" on his taxes before 
the end of the calendar year.. 

I would like to Remind those of you in 
the USA that the WPI "is" a 501c3
and qualifies for such deductions..
If you ONLY give to one charity this year
I BEG YOU Please Give to WPI....


I will share with you Now the letter from
Annette Whittemore as this year ends..
and then I will give you info about where
you can send in your charitable donation
to a Place that has already done SO MUCH 
for the Spirits and Hopes of SO Many ♥

Bless Dr Peterson for all of his YEARS
of help and support and persistence
to help find a cure for ME/CFS folks..


Bless Mr. & Mrs. Whittemore for chosing
to "back him" and help FORM "WPI."
and deal with all of the legalities to 
form the 501c3.



Bless Dr Judy Mikovits for coming to 
work for WPI and dedicating her life
and energies to research to help us.

*******

Letter from Annette Whittemore

December 19, 2009

Dear Friends,

On behalf of all of us at the Whittemore 

Institute, I hope this holiday season finds 
well. While 2009 has been challenging for 
so many of us, this year saw unprecedented 
progress at WPI: progress that would not 
have been possible without you.

The unquestioned highlight is our joint 

discovery of a retrovirus, XMRV, in 
patients with chronic ME/CFS. 
Through collaboration with the National 
Cancer Institute and the Clinic, 
Dr. Judy Mikovits and her research 
colleagues were able to discover this 
retroviral link. Our findings were 
published in Science, one of the world’s 
leading journals. This groundbreaking 
research has been reported around the 
world. You may have seen our coverage 
in the New York Times or The Wall Street 
Journal, or seen or heard it on 
Good Morning America or 
National Public Radio.

This discovery will lead to diagnostic 

tools using reliable biomarkers of disease,
and is a major step toward identifying 
drug therapies, and potentially a vaccine.
Laboratory testing for XMRV has already
been made available to patients. 
We have been overwhelmed with words
of support and encouragement from 
patients around the world who have a 
new hope, and a very real validation 
of their suffering:

“I had the honor and excitement of 

watching the live broadcast of the NIH 
presentation of your research... I quietly 
cheered as Mrs. Whittemore gave her 
speech about the sufferings of those of 
us with ME/CFS. Thank you so much for 
your bravery and persistence in fighting 
this disease.”
Kristi H.

“I do not have words to thank you for 

the work you have done. It has now 
been 30 years since I fell ill and I truly 
never thought I would see the day 
this terrible knot was untied.”
Christina M.

This discovery has brought worldwide 

attention to WPI, and to the University 
of Nevada School of Medicine, our home. 
Next summer we will be moving into 
the new Center for Molecular Medicine: 
a move that will expand our research 
capacity as well as opportunities to 
collaborate with other great researchers 
and institutions. You can see the new 
building taking shape on the Nevada 
campus right here in Reno.

Our 5th annual "I Hope You Dance" 

fundraiser was a great success, and 
guests heard a moving preview of the
XMRV discovery from one of our friends 
and scientific advisors, Dr. Carl Ware of 
the La Jolla Institute of Allergy and 
Immunology. That we have partners the 
caliber of Dr. Ware is a testament to the 
high quality of the work at WPI. 
That we have reached this level of respect
in such a short time is a testament to the
generosity of people like you.

There are millions of Americans suffering 

from ME/CFS, a debilitating acquired disease 
that often leaves its sufferers too ill to 
leave home; alone and without a source 
of income or health insurance they begin 
to lose hope that a better day will come. 
Countless others around the world suffer 
from diseases such as MS, autism and 
fibromyalgia without treatments for the 
underlying causes of their disease. 
Our research is literally changing the field 
and expanding the network of researchers 
and clinicians who want to help further this work.

Although we have accomplished much 
this past year it is only the beginning of 
our quest for answers to neuro-immune 
diseases such as ME/CFS, autism, MS, 
fibromyalgia and others that affect both 
the brain and the immune system.

The word is out about WPI and we have 

the focus of hope for so many patients who 
have longed for the proper diagnosis and 
care of their conditions.

“Thank you from a grateful CFS patient. 

I am a single Mom who has suffered from 
CFS for 18 years. It has left me frequently 
bedridden, unable to work and dependent on 
Social Security for most of this time. 
My children, family, and I have hoped and 
prayed for such a find for all of these years.”
Ann S.

Now, you can join me in this vital 

groundbreaking work which is being done 
right here in Northern Nevada. 
Doctors and patients, the world over, are 
watching and waiting. We are thankful to 
friends like you to help make this vision come
true for the countless patients who suffer.

Thank you for thinking of us as we end a truly

productive and thrilling year. I wish you and 
yours peace, health and happiness today, 
and as we look to the year ahead.

Sincerely,
Annette Whittemore
Founder and President 

***************************
PLEASE Share this article with any of
your friends that have a neuro-immune
illness and any of your friends that
still need to make their year end 
charitable donations made in time..OK?

Simply click on the WPI link and 
it will take you to their website
and the page on which you may
Donate via Paypal and it also has
their address in case you wish to 
write a check and mail it to them..
This will also give you a chance to 
check out their website and read
about all of the research they 
are working on..








WPI-Donate

Since the WPI has brought the 
"feeling of the Sun" back into many 
of our Lives.. I dedicate this song to 
them  to represent this coming year...


Bless you ALL and may we ALL have 
a Happy Healthier next Decade !!!


Monday, October 26, 2009

#26~ THIS Thurs & Fri-Watch CFSAC meeting LIVE if you can

PLEASE Spread This Info FAR & Wide
Around the world... OK?

to get as many people as you can~
to get those computers online watching.
..and to HEAR what Dr. Peterson,
(he is alotted ONE HOUR) 
Dr Bell (alotted 30 mins)
and the CFIDS Assoc has to say during
their 5 min segment during the
"Public Comment" segment....

BLOWS my mind that CAA only is
relegated to a 5 mins of the Public
Comment section, as THEY are
supposed to be OUR Voice...
They sure have alot of clout, huh? NOT

OUR computers turned ON and tuned IN
will SPEAK a LOT LOUDER to the NIH..
So PLEASE turn every computer on 
that you can...OK?

Please watch if you CAN or even replay after
I will add the link for a time zone convertor
down below for your reference.

For those who won't be attending the
CFSAC meeting, be sure to tune in to
the LIVE webcast of the CFSAC meeting
on October 29th and 30th at the following
links:

The schedule for the 2 day event is
located here: THIS Thursday & Friday


Day 1
*Day 1 LIVE online webcast*

Day 2
*Day 2 LIVE online webcast*


*The number of computers "logging on" 
and watching will be counted by the NIH. 
Let's make those figures 
count for something!*

For those who can't watch live,
archived videos will be available at:

Past Events

The meeting is taking place in
Washington D.C. so that is EDT
if you are in the USA.
If you are elsewhere around the
world we will NOT be changing back
from Daylight Saving Time this year
until Nov 1st, so Wash DC will still be
- 4hr GMT, so you can calculate
from there...

Time & Day World Clock

PLEASE Help us Blow their viewer
Numbers OFF the charts 
THIS year, OK?

Just so you Understand.....
This is a committee that is a Branch
of the USA Gov.~Heath & Human Services
Dept so this is REALLY Important to US
to get their ATTENTION... capiche?
If we can get on the Radar of  
HHS Secretary Kathleen Sebelius
that would be a "real coup."

The "squeaky wheel" gets the grease..
Help us show them we NEED the Grease
THIS YEAR like NEVER Before...
Let's as they say...
"Strike while the iron is HOT."
If not NOW ~ WHEN ???

We've been HERE since before AIDS and
we'll be HERE after the Swine Flu...
Let's USE the Internet and 
show the Power of a Cause 
whose Time HAS Come.
28 million Voices will 
NOT be Silent Anymore.

Thanks for tuning in and Turning ON ;-)
Stay UNITED and 
Let's TURN the Volume UP.

GO Team~ XAND ?
accepting slogans now ;-)