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Showing posts with label FDA. Show all posts
Showing posts with label FDA. 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, November 2, 2010

#93~ From Blood Ban to Drug Ban ~ collusion afoot ?



On the heels of the Fantastically attended UK Blood Ban Demonstrations all over the country yesterday covering all the mediums of BBC print, Berkshire radio, still images and video, and many "impromptu" educating classes at various Blood Donation Locations... there seems to be a "Trans-Atlantic Spoiler Alert" that needs to be Given ATTENTION By ALL patients + advocates  on BOTH sides of the Atlantic.
This does NOT ONLY effect ME/CFS patients !!!


Sunday night while everyone was celebrating Halloween, or planning for the 
next's days  Demonstrations, there seems to have ALSO been an orchestrated Trans-Atlantic gauntlet being thrown down in the UK and the USA regarding the usage of certain drugs that help patients, BUT their usage is being attacked via two different modes.


In the USA the news has been reported that  the FDA plans to start bringing "Criminal Charges" against Big Pharma CEOs for "OFF Label  Usage" as if the CEOs could know how and where their drugs are being RX'd. 

This is modeled on the questionable usage of the Park doctrine, that states company officers should be held liable for any illegal actions 
"by the corporation that the officer should have known about and been able to prevent."  
Here is a document that explains the Park Doctrine and HERE is a recent article explaining  the stakes we face. 

I don't mind the "Original Usage"  of the Park doctrine making sure that meds are not manufactured in unsanitary conditions, but this "Off-Label" trial balloon being floated here by the FDA Chief Litigation Attorney, Eric Blumberg, is seeking to "change corporate culture" in Big Pharma corporations.  

What I think he is forgetting is that many times there are NOT adequate approved drugs for many illnesses and many patients NEED and are Being Helped by these "Off Label" uses of many drugs..


This will be used to shut down "Off Label usage" and effect things like "LDN" and probably others I am not aware of....

The Timing of this Announcement seems "fishy" esp. after the UK NICE Guidelines Announcement  of their  making decisions about IF a Drug is "TOO Expensive" for  the stated purpose they could "effectively" decide what Dr's CAN prescribe or NOT within their medical system.

In the UK The National Institute for Health and Clinical Excellence, or NICE, scrutinizes the cost and clinical benefits of new drugs to determine whether the state health-care system should pay for them. If NICE decides that a drug... isn't worth its price tag, it advises doctors not to prescribe it, which effectively results in a ban. HERE is an article about this sad situation

ALL of this at the same time that already many patients with ME, Fibromyalgia and RSD and many other painful diseases are not able to get quality pain relief and we are fighting a backlash because the Dimwits at the Top do NOT realize that people that are "actually" taking pain meds CUZ THEY ARE IN EXCRUTIATING PAIN "ARE NOT GETTING HIGH" they are Simply trying to get some relief so the can even get some life back and be Functional.. 

Only those NOT IN PAIN get HIGH in this kind of situation.. This is SO Obvious to anyone that has a chronic pain to deal with that this is absolutely Ridiculous. Another case of Give the Politicians and FDA folks THAT KIND OF PAIN FOR A FEW MONTHS AND MAYBE THEY WILL UNDERSTAND ? Here is an article that speaks to the sad state of Pain Management in the USA currently.


I have a Really BAD Feeling about ALL of this...  It makes me believe in my gut that we are going to have to be MORE ProActive also about these issues and that means being more expressive by whatever means those in the effected county decide. But ONE THING is for SURE.. IF you "DO Nothing"  your ability to get the medicines you need WILL be effected, Trust me. This is NOT a Joke or False warning.


As they use to say on "SNL" (Saturday Night LIVE) during "Coffee Talk".... I sincerely ask you ALL to "Talk Amongst Yourselves" and decide how you want to address these issues, but they MUST be addressed....IMHO...but that's just 
"my opinion" based on years of observing the Medical Profession, the Governments involved and now the apparent "innocent co-incidental timing" of these edicts and pronouncements..

If it's smells like a fish, and is slippery like a fish, and wiggles when they explain their reasoning and excuses with logic that isn't logical .....it Must have scales.


You have been informed. What you do with this info now is up to you.


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Tuesday, August 24, 2010

#76~ NIH/FDA vindicates WPI paper= BooYah!



Latest Paper links 85% of ME/CFS patients with a form of Retrovirus !!

This is "one" of the days we've been waiting for... and it did NOT disappoint.
Here is a pdf copy of the Alter/Lo paper if you want to read the whole thing..
PNAS-2010-Lo-1006901107.pdf

As of this moment's count over 104+ articles have been written per Google by various new agencies/papers about this research Paper on the latest RETROVIRUS Family that is infecting HUMANS...a good number of them unfortunately tho seem to MISS the Major POINT Here.. that THIS is a Retrovirus... NOT just your average "I've got a cold" Rhinovirus.. 
Maybe they forgot HIV that caused AIDS is a RETROVIRUS ??

The NEXT Question is WHEN are they going to take it SERIOUSLY with regard to the "Public Blood Supply" and DEMAND that the blood supply be screened for this Family of Retroviruses so that every person about to "donate/receive" blood or receive a transfusion does NOT have to worry about passing on the Horrible Diseases that those of us for the last 24 years have suffered from... it may not kill you IMMEDIATELY Like AIDS, but Trust me, it WILL Kill your Life As YOU Knew it...

It is Progressive and can/will go on to cause other organs to fail and take your families energies, bankrupt bank accounts and any semblance of a "normal life" they had with it.

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

Statement by Whittemore Peterson Institute
August 23, 2010

Statement on XMRV/Chronic Fatigue Syndrome 
Positive replication study confirms WPI’s findings

The Whittemore Peterson Institute(WPI) would like to congratulate the distinguished authors of the recently released replication study linking XMRV with Chronic Fatigue Syndrome, Dr. Shyh‐Ching Lo of the Food and Drug Administration (FDA) and Dr. Harvey Alter of the National Institutes of Health (NIH). Their published findings in the Proceedings of the National Academy of Sciences (PNAS), confirm the central thesis of WPI’s 2009 study associating a new human gamma retrovirus, XMRV, with patients diagnosed with myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS) while also providing answers for the failure of others to find such a link.


Validation by these prestigious researchers from two United States governmental agencies demonstrates the need for expanded research on human gamma retroviral infection and its association to ME/CFS and other neuro‐immune diseases.


“We are hopeful that with continued collaboration between our government, the biomedical industry and institutions such as the WPI, we will continue to discover answers for the millions around the world who suffer with neuro‐immune diseases,” said Annette Whittemore, president and founder of the Whittemore Peterson Institute. For additional thoughts by Dr. Judy Mikovits, please view (below).


The WPI is committed to the research and further understanding of XMRV and its
relationship to neuro-­immune disease. With the recent opening of the institute’s new translational research facilities located on the medical school campus of the University of Nevada, Reno, come expanded opportunities for new avenues of research and development of effective diagnostics and treatments for those affected by neuro-­immune disease.



http://www.wpinstitute.org/news/docs/WPI_pressrel_082310.pdf


Annette Whittemore


Dr Judy Mikovits


MORE Research is Needed NOW more than EVER so we don't have to go thru another Epidemic without the Research having been DONE when we KNOW we have the knowledge, the Scientific talent and the Drug companies are ready to alter their meds and start Trials ASAP... Please Help us Help YOU>

If you wish to Help:

*You can pass this article on to someone you know that NEEDS to know this info.

*You can pass this article on to someone that you feel would be in a position to Help us. 

*You can write a letter to the Dept of HHS and ask Sec Kathleen Sebelius to screen the country's blood supply ASAP for the family of the MRV Retroviruses.

*You can Help by even spreading the Word that a 3rd Retrovirus is OUT THERE or Rather IN OUR BLOOD and the Public needs to BE AWARE NOW....

*You can also be aware that there is a HUGE Difference between "chronic fatigue" and "Chronic Fatigue Syndrome" aka ME/CFS myalgic encephalomyelitis.. that the CDC has Refused to ACKNOWLEDGE FOR 25+ YEARS... "as if diseases will Honor County borders.." in the rest of the world this is called M.E.

*You can also even if it's just $5 Help us by donating to the WPI...
The ONLY Place like this in the WORLD> Seriously !!! They need EVERY Penny for Research they can...They were the FIRST even w/o their building to make the First Breakthru on this illness, but this is ONLY the first skirmish... we have Far to GO...
http://www.wpinstitute.org/help/help_donation.html

In the last CENTURY the World has NEVER seen a facility like this built around the patient, with researchers, scientists and Dr's to treat the patients... This is HISTORY MAKING AND NEEDS YOUR SUPPORT cuz you KNOW "The Insurance Co" sure as heck aren't gonna pay for this... So PLease check this out and then collect those pennies, nickels, dimes, dollars and whatever you can gather.. any kind of Fund Raiser you can think of...PLEASE....
Do I need to tell you HOW many children also have this illness ?? 
You would be crying and not be able to read this blog. Seriously ....

This is what we have been working HARD for and This Building JUST OPENED last weekend... so they are just beginning..

Without your Help EVERYTHING will take LONGER....and Retroviruses 
spread Fast and do NOT discriminate against age, sex or profession.

The NEW WPI Facility~



The 17million (so far) around the World ♥THANK YOU♥


Saturday, July 3, 2010

#73~ CDC-XMRV (not) paper ~ WPI responds

Research Science badmitton? What the heck??
Science paper: ping pong, tennis, golf, whatever is NOT what this is supposed to be about..
This is a time for Serious Research Science NOT game playing.



This is REALLY getting OLD... 
IMHO, I believe that when Reeves left the CFS Dept, that he took or buried the samples of XMRV so they would never be discovered at the CDC. Reeves even SAID~ while he was still in charge of the CFS Dept of the CDC, that he "didn't expect to find XMRV" ~ duh yeah... 
even when it's sent to YOU ?? He either has NO brain cells or is INTENTIONALLY using another definition and testing methods so that he/they will NEVER find them as he states...

Hum... SURE sounds like a cover up and he must have buried the evidence before he left the Dept to me.. but WAIT... is that his name I SEE on the NEW Paper ????


This bumbling group that is "suppose to be" OUR Center for Disease Control
can't even find XMRV when it is "Handed to Them." HOW Dense are they?

Can anyone say ~ 
"Intentional Cover-up," 
"History is being repeated,"
"the band plays on"...
anything ringing a bell yet?


And mind you.. this is NOT ONLY about ME/CFS... This is NOW a "Public Health" issue because of all of the donated blood for the last 25 years that has contaminated the public blood supply ALL over the World that now has XMRV in it... Hello !!!


We REALLY need the Department of Health and Human Services (DHHS)
Sec. Kathleen Sebelius to "reign in" the CDC and to do some "house cleaning"
over there and make them a source of Pride not a National Embarrassment and a Public Health HAZARD.


PLEASE write to her and Sen. Harry Reid and ask them to form a 'Congressional Committee' to find out what the heck they are doing over there with the samples they are being sent and WHAT kind of Research they are doing if the WPI, the Cleveland Clinic, the National Cancer Institute, NIH and FDA "can" FIND XMRV but the CDC can't...???  

They are proving themselves to be absolutely NOT Trustworthy and there Needs to be a Congressional Investigation about their inept behavior. They are NOT conducting themselves with Integrity and are certainly "covering-UP" something... and it smells rotten for sure.

We have written to them since we first sent the Obama-Biden Transition paper in after they were elected. so we need to keep this IN FRONT OF THEM...


Even the CFIDS Association, Dr Suzanne Vernon said the CDC was NOT looking for XMRV... and "That's saying a mouthful."


They are wasting our precious tax dollars and NOT finding what is handed to them.. Are they Ignorant, Dumb, Blind, or what's their excuse de jour?


Ask them AGAIN to "change" the CDC definition of CFS and to NOT use the Fakuda, but the Canadian definition...We have already presented the CFSAC with the petition that was signed by thousands of people. We do NOT want them to Widen the definition and test folks that are only depressed or tired.. that is NOT the population that they are suppose to be testing.....THAT is NOT ME/CFS..

We the People "will NOT Tolerate this grade school chemistry" from the CDC any more.. PERIOD. 


Please write to the First Lady Michelle Obama also and to Senator Harry Reid and to Sec of HHS Kathleen Sebelius..


First Lady Michelle Obama
1600 Pennsylvania Ave NW
Washington, DC 20500-0004


The Honorable Harry Reid
United States Senate
522 Hart Senate Office Building
Washington, D.C. 20510-2803



Kathleen Sebelius
The U.S. Department of Health and
Human Services
200 Independence Avenue, S.W
Washington, D.C. 20201

email: Kathleen.Sebelius@hhs.gov

 

*** If you do NOT wish to snailmail them and WISH them to be DIRECTLY Handed to Sen. Harry Reid and he will take them back to Wash. D.C. and "make SURE" they are given to the Proper person... Then you may write your letters and email them to Andrea Whittemore and she WILL hand them to him Personally !!! and we will hand him buckets of Letters that should make a GREAT Impact, so Please start writing and editing your wording until you have exactly what you want to say and then by the end of July we shall be ready to send these ALL to Andrea and Make an IMPACT back in Wash DC when the Congress comes back into session, as the NIH is holding the 1st International XMRV Workshop over Labor Day weekend, and the next CFSAC meeting will be taking place so the HHS "will be" paying attention to what is going on.. and This would be the Perfect time for Sen. Harry Reid to see if he can get a Congressional Hearing called depending on just HOW BAD things roll out this summer..during the summer Retroviral paper show..don't forget your caramel popcorn to enjoy the show while you take your notes..


The Senate is on July 4th and summer Break soon... so we are working for "Maximum Impact" here.. so the more letters we can give him "at ONCE" the Bigger our Impact will be.. so watch the Insulting non-science show this summer of the CDC and write you letters and then get them to Andrea to hand to Sen Reid personally when WPI "OPENS their Doors", as they are in Nevada~ HE will be in attendance.. So PLEASE help us get these letters TO him DIRECTLY, OK? Seriously !!!

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

Here is the WPI's response to the new CDC paper~

Whittemore Peterson Institute Statement regarding
Centers for Disease Control XMRV Study


Contrary to the WPI study published in Science in October, 2009, as well as studies done by
others, including the NIH and FDA, Mr. William Switzer of the Centers for Disease Control reported
that his research team was unable to detect XMRV in CFS patient samples. This negative finding is in
contrast to the WPI study in which we detected XMRV in 67% of CFS patient samples.


To correctly replicate scientific studies it is imperative that researchers use the same methods and patient criteria to ensure accurate results. The methodology used by the CDC was not the same as that used in the WPI study nor was the patient selection criteria. In September 2009, WPI sent the CDC twenty confirmed positive samples and the appropriate methodology to help them develop a clinically validated test. However, this team chose not to do this.


Until researchers use clinically validated tests to detect XMRV in patient samples, as WPI and their collaborators have successfully done, an accurate association of XMRV to any diseased population cannot be made. For this reason, WPI researchers and many others are currently validating more sensitive clinical assays to assist federal agencies in their search for the true prevalence of XMRV in the human population.


WPI will continue its core mission to deliver answers to patients with neuro-immune diseases by supporting the development of accurate diagnostics and providing effective therapeutics and clinical care.

http://www.wpinstitute.org/news/docs/XMRV-CDC%20Statementrevisedawfinalawfinal.pdf

********************************
As we need to find out who "all over the world has XMRV and who doesn't" and screen the world's blood supply... this is a BIG deal.


It does NOT matter what illness/cancer this retrovirus is linked to or causes...
The Research that is Done needs to be Legitimate and Accurate and they need to be using the same methods and samples. ONLY then will we get consistent results and then move on to researching what else these folks have picked up and sort them out from those that don't have it and look for the causes of the other Neuro Immune Diseases.. 

I have also just read a report that even claims that Narcolepsy is probably an Immune Disease. 

The repercussions are endless.. but the testing has to be flawless and Legit for us to make progress at all...

Please write your letters AND also ask everyone you know to support the ONLY "current place" that is NOT a Gov't agency and is a non-profit working ONLY to help us with Legitimate Science....aka the WPI.

http://www.wpinstitute.org/help/help_donation.html 


Also, Please write your Thank You notes to Dr Dan 
Peterson, ASAP~ 
so we can present them to him in a creatively hand made scrapbook 
form graciously made by Lisa at the WPI Gala... 
so send those notes in, so she has time to put the whole thing together, OK? Thanx
I sent mine 2 nights ago... The Gala will be after the
XMRV - NIH Conference, after the CFSAC and will be after WPI 's Official Opening..
so we HOPE it to be a GRAND Night... see the "previous post" about the Event.

Bless you WPI and everyone there....

Thursday, January 14, 2010

#49~ Wake UP Kaiser, HMO's, AMA & medical schools



I am writing today's post because I just found out about something that
in light of recent medical news, events over the last 4 months, have been such a game-changer to 4 million Americans, and the 28 million worldwide and today I find out that KPMG aka Kaiser Permanente Medical  Group an HMO throught-out the USA is NOW in some of its facilities NOT going to be replacing the Rheumatologist/Infectious Disease MD's and is referring their ME/CFS patient back to their Primary Care MD's.

What the Heck is this ??? Going backwards in Medical Care?
SHAME on you Kaiser...   Henry J. would be ashamed of YOU..

NOW when ME/CFS patients are mostly likely being shown to have
a Retrovirus, you are dumping them  back on their GPs ???



Hope you have MANY hours of CME credits planned for them to
(continued medical education) take to come UP to speed and
Suddenly turned INTO RetroVirology Specialists ??
Wouldn't it be MORE Practical to have at least ONE Virology MD
on your Staff? Who treats your AIDS patients now ??? 

That's a Retrovirus also, in case you forgot...???

..as recently come to light, to the "public," but LONG-KNOWN by
the long suffering patients, the regular MDs that most of us have
learned to TRUST over the years have NEVER BEEN Educated about
ME/CFS and the Professors that try to educate the Medical Groups
around the country/world have been threatened with Termination and
others already have been.
Even future medical students have testified that they KNOW ME/CFS
is REAL yet they fear they will  not be properly educated about it and
will be threatened if they even discuss it as others in medical schools have been.

This info has been documented  and presented to the CFSAC meeting
(under the HHS.gov) webcast LIVE and it has been backed up by other testimonies and the experiences of many patients because " your average Joe MD" has NOT been taught about this disease
and has been advised to pigeon-hole everyone with a "Psych label" and
told that it was "all in your head" when there IS actual clinical criteria
(SEE Dr Donnica's article below) and forms of testing that can PROVE
that this illness is REAL and yet Kaiser in this 21st Century, who pays for these TV commercials about how much they care about you ONLY cares about their bottom line..
Another example of a Health  Maintenance Org. that is ONLY
trying to maintain THEIR Financial health..not your physical/emotional

health ~ NOT yours...



"Chronic Fatigue Syndrome (CFS) has received relatively little consideration since it was first described in 1988,  but the recent finding published in the prestigious journal Science showing an association between CFS and a retrovirus, XMRV has focused media and medical attention on this serious, devastating and debilitating neuro-immune condition.

While there are some people with CFS (PWC) who are able to continue
working and doing some of their activities of daily living, there are
many at the opposite end of the spectrum who are bed-ridden,
completely disabled, and can’t even get to the bathroom without assistance. While CFS doesn’t kill many people, it does take away their lives and, in many cases, their livelihood."


Excuse me, but because of the PTSD and many YEARS of Mental abuse 
perpetrated by the Medical Profession upon these victimized patients
trying to honestly get HELP and Medical CARE from their Dr's they are "suppose to  be able" to TRUST.. that have sold them down the river, caused their families YEARS of unnecessary mental and financial abuse, bankrupted families because of the Court Costs for parents of children with  ME/CFS having to PROVE that they are 
"fit parents" cuz the kids are too sick to attend school and the DSW
shows up at their door.... and MANY other abuses over the years..
I am sorry to say that there are MANY that havd died because of 
ME/CFS, just as we have had soldiers commit suicide from the PTSD from the sites of war...Well, many patients with ME/CFS have PTSD from
the years of Medical abuse and  I am sad to say that Suicide is a Sad but 
Often END to the Abuse and Pain.
Disagreements over how the condition is dealt with by health care systems has resulted in an expensive and prolonged conflict and the EARLYDeath of many patients...

(Dr. Donnica 12/02/2009 article)

KPMG this current plan on non-action on your behalf I fear is a step backwards for the medical profession and will cause patients to trust their Dr's even LESS... and show that YOU are NOT staying "current" with what is already known WorldWide and ignored by you like an
ostrich sticking your head in the ground to play ignorant & play Dumb ?
If you are Ignorant of This Game changing News.. Please avail yourself of the MANY places the info has been posted.. maybe
even watch the CFSAC Meeting ?May I suggest you WATCH BOTH Days?

Many ME/CFS patients would LOVE to be able to GO back to work  or work from home online and Have a Life again and even be able to Pay Taxes...Why are you NOT Helping this country by Helping it's citizens have better health care so we can work?

And SHAME on the AMA and whoever is  in charge of the Rules governing the Medical Education and Schools in thisCountry... You are definitely complicit in this cover-up and "intentional"lack of education and thus trauma you are and have been causing the millions of ME/CFS patients that you have been shoveling over to the Psych Dept when they have a VERY Real Biological Disease that is NOT "all in their head."

YOUR illusion that this will "go away" and that we will NOT stand UP to you and demand to be treated like HUMAN and not the mice that passed this retrovirus on proves it is all in YOUR Head... WAKE UP..

In fact, the Blood Supply of the Country and World needs to be screened just as it was for HIV and the Dr's on the  CFSAC Committee have even passed that VERY same Recommendation on to the Secretary of the HHS so we will NOT have another "an the band played on" situation like we did during the 1980's with HIV being passed on to many people
having transfusions...not to forget all of the organ and tissue transplants.

WAKE UP KAISER ~ WAKE UP Citizens
~ WAKE UP HHS Sec. Sebelius~
WAKE UP CDC & FDA~ WAKE UP MD's around the world~
WAKE UP Minister's of Health~

Ignorance we HAVE a Cure for.. but Stupidity we do NOT...
If you choose to NOT educate and teach about a subject, WHY should we TRUST you? Trust needs to be EARNED. You are currently Losing it....
SHOW us you have the Guts to Be Honorable and Live up to your
Hippocratic oath of "Do NO Harm."






I am asking everyone that is reading this to either write to their Congressional Reps, Ministers of Health, HMO's, Letters to their
Editor, anyone they can think of and MORE to bring this subject to the forefront.

How many poor patients of catastrophe's are going to receive transfusions w/o knowing if the blood they receive has  XMRV in it ?? that they might develop one of the MANY Neuro-immune diseases 
or Cancers that  is linked to..

Why do you think Michael Jackson had to HIDE the fact that he had 
Lupus and Vitiligo... because the  medical world had NOT done their 
part to learn and educate themselves and the public so that this GREAT
Star did not have to live the Life of a Recluse as do many of the patients
with other neuro-immune diseases.
WE understand the problems he HAD sleeping because we have them 
ALSO. We understand the Stigma the CDC and medical profession
had imposed on these patients...
Not to forget the PTSD they have inflicted on them by abusing their
Trust and sending them to Psych....SHAME on you.....
You have made their illness WORSE by your action/OR "Lack thereof" and you HAVE caused HARM.



Why wait for Big Pharma to invent a  med to treat EACH and every illness Choose to Back the Researchers that  are Helping to find the Cause and Cure these diseases... such as in the USA...  
the WPI in Reno, NV.

WRITE THOSE LETTERS...  Give to the Researchers...
Speak UP and Question.     It's YOUR Life.. Keep it ♥

Tuesday, December 8, 2009

#43~ CDC Re: XMRV Inter-Agency Working Group

NEWSFlash...  both Good and Questionable......

The CDC will be part of an interagency working group 
on XMRV, led by Dr. Jerry Holmberg. 
A three-part study will be initiated:

#1) The first part will consist of standardizing and 

validating laboratory methods and reagents for 
XMRV testing. This stage will use samples provided 
by samples collected by Dr. Judy Mikovitz. 
The intention is to create an FDA approved test.

#2) The second part will test a much larger sample 

than the initial study, trying to determine the 
prevalence of XMRV in the general population, 
and the blood supply.

#3) The third part will consist of how XMRV is 

transmitted, how it causes disease, and how it 
affects various subgroups of the population.

Some are "claiming".... but "I'm NOT Convinced yet"

CDC ~  Face saving action:
CDC ME/CFS Group Relieved of XMRV Research

"In a stunning move, responsibility for XMRV research
has been taken away from the ME/CFS working group
within the CDC, and re-assigned to the division of
HIV/AIDS prevention. "

I hate to sound like a downer.... 
but I see a different side to this coin..


"This group will be in charge of replicating findings 
of the Whittemore-Peterson Institute, rather than 
the group under the control of Dr. Reeves. "

  Reeves had ALREADY told us that HIV/AIDS 
was NOT in his CFS working group..
and that HE did NOT work on Viruses... 


Remember all of those long many emails sent
back and forth between him and another about 

WHY he would not come to a conference about 
HHSV or any such thing...?? about a year ago???

"The move is highly significant: it appears that the 
CDC is now acknowledging the serious nature 
of XMRV. "

They are allocating the research of a "retrovirus" 
to the HIV/AIDS section  ----> as it should be.
They are "Simply" researching a virus DUH...

in the the Viral Dept... if they Didn't we would have 
MORE to complain about..and I mean the 
Entire Public..NOT ONLY the ME/CFS folks...

"The forceful demotion of Dr. Reeves is a sign that 
the CDC is in damage control mode." 

They have NOT yet declared that THEY believe 
that XMRV "IS" the Cause of ME/CFS.
This just says to me... that they could also 

be giving Reeves "cover" because
they don't feel that ME/CFS is a virus... get it??? 
It's from Depression.. .Remember? ??

"The HIV/AIDS prevention group in the CDC has 
many capable retrovirologists, who can provide 
years of expertise. This turn of events should lead 
to balanced, common sense research."

I am Hoping that this IS TRUE for XMRV and 
the general Health of ALL of us...
Whether they AGREE with the findings of
WPI.. is yet to be determined...
They de-faced Dr. DeFreitas... 

Will this time be any different??
Be Aware.... VERY aware...study every 
bit of wording.. to NOT read it the way
YOU want it to read..  
Remember they have PAID "PR folks" to 
word things so they will be "spinned" a certain way.

This is the UN-Spin Zone... 

ONLY  in the #3 part at the top would the studying 
of ME/CFS and XMRV come into play and possibly 
interract... THIS tells me that the CDC is studying 
XMRV...NOT that they are studying ANY connection
between XMRV and ME/CFS..... YET>.. like I said...
Maybe in Part #3 IF we stay ON them....
so do NOT Party YET ...Please...

I don't see HOW this YET changes anything 
regarding Reeves or ME/CFS.
It'll take a BETTER argument than this...
PLEASE...Convince me...I "beg" you.....
 

BUT....they are supposedly taking action
on "Part of this" ....Do NOT let up the Pressure..
We have Made Great Strides This Year...
Let Us ALL OVER Continue United 
Gentle with ourselves but STRONG against
anyone that tries to perfrom any Cover-up 
OR any more Delays....OK?

**GO TEAM GO** 



Thursday, November 12, 2009

#37~ Mixed news about HEB lab-Ampligen

Many of us have been hearing about previous
ME/CFS patients on trials of Ampligen and some
have done incredibly well for long periods of time
after being on it for about 18 months and others
felt no improvement at all.

Recently, Hemispherix Labs (AMEX:HEB)
posted some news about new trials they
were about to start and at the same time
we have news about a class action suit
being brought against them for withholding
info about request for info that was not complete
that needed to be submitted to the FDA.

I will present both sets of info for you here to read.

Nov 10, 2009 
Dyer & Berens LLP (www.DyerBerens.com) today
announced that it has filed a class action lawsuit
in the United States District Court for the Eastern
District of Pennsylvania, Civil Action No. 09-cv-5262,
on behalf of all purchasers of the securities of 
Hemispherx Biopharma, Inc. 
("Hemispherx" or the "Company") (AMEX: HEB)
between February 18, 2009 and October 30, 2009 
(the "Class Period"), for violations of the federal
Securities Exchange Act of 1934.

The complaint alleges that, during the Class Period,
defendants misled investors regarding the status
of Hemispherx's New Drug Application ("NDA") 
for Ampligen with the U.S. Food and Drug 
Administration ("FDA"). Specifically, defendants 
failed to disclose and misrepresented the fact 
that the FDA had requested several reports 
from the Company before the NDA could even
be considered, thus delaying the possible 
approval of Ampligen by several months 
at a minimum. 

On November 2, 2009, when the Company 
belatedly disclosed this information, the per share
price of Hemispherx's common stock dropped
from $1.45 on the previous day to $1.13,
a drop of more than 20%. The next day,
one commenter characterized the November 2nd
Company "update" as essentially an admission
"that its prior public statements were
false and misleading."

Tuesday, November 2, 2009


Update from Hemispherx Biopharma 

(makers of Ampligen)

Hemispherx Biopharma Updates Chronic Fatigue 
Syndrome (CFS) Treatment and Commercial 
Application Programs

PHILADELPHIA, Nov. 2, 2009 (GLOBE NEWSWIRE)
-- Hemispherx Biopharma, Inc. (NYSE Amex:HEB)
(the "Company"), announced a two-prong CFS
clinical mission for November and December 2009.


The Company plans to widen its ongoing clinical
programs in CFS by accelerating collaborations
with a consortium of researchers who have just
discovered a retroviral link to
Chronic Fatigue Syndrome. A clinically validated
test to detect retrovirus antibodies in patients
plasma is also currently under development
(please see US National Institutes of Health ).

With the consortium of researchers at the
Whittemore Peterson Institute, the Company is
also now evaluating the defect in
immunosurveillance in specific subsets of
CFS patients in a clinical study entitled
"Therapeutic Activation of NK lymphocytes to
Alleviate Chronic Fatigue Syndrome."
These immune defects may be due
to the previously undetected retrovirus.
The Company also plans to complete all 
outstanding queries from the FDA regarding 
its New Drug Application (NDA) for Ampligen(R),
an experimental therapeutic, 
during November and December, 2009.

On May 26, 2009, the Company announced a delay
on the Ampligen NDA which, at the time, had a
PDUFA date of May 25, 2009. As noted in the
10-Q and 10-K filings at the time, the FDA did 
not request "additional information" from the 
Company at that time. However, several 
outstanding NDA items, requiring Hemispherx
responses, existed at the time of the FDA delay
as noted in the August 8, 2009, 10Q filing.
Between March 9, 2009 and September 15, 2009,
the Company issued six (6) new reports to the
Agency spanning various subjects including
a) clinical safety assessments,
b) specialized pre-clinical toxicology reports, and
c) abbreviated chemistry and manufacturing
control reports.
The Company believes that these reports may
fully retire all Agency queries in these
particular areas.


The Company also plans to submit four (4)
additional reports on interrelated topics in
November and December, 2009, which will
include pharmacokinetic analyses in multiple
lower animal species (primates, rodents, etc.)
("the Lovelace Laboratory Studies") and final
validation reports of certain manufacturing
procedures conducted at an independent facility,
Hollister-Stier Laboratories in Spokane, WA.
Some of these reports were recently cited in
BioMedReports.com and the
Science Business Exchange (October 15, 2009).

Information contained in this news release other
than historical information, should be considered 
forward-looking and is subject to various risk factors
and uncertainties.
The Company disclaims, however, any intent
or obligation to update these forward-looking 
statements. Clinical trials for other potential 
indications of the approved biologic 
Alferon N Injection® do not imply that the product
will ever be specifically approved commercially for
these other treatment indications;  
Similarly, the completion of NDA filing process
with Ampligen® does not imply that the product
will ever be approved commercially. 
 
"partial press release" reprinted from:
Hemispherix Biopharma website 

Personally as an investor that HAD owned HEB
during the time mentioned in the class action suit
I agree that HEB was NOT forth-coming with the
actual facts of the matter...However, as I was NOT
in for the "long haul" but the trade>had let the stock
"pop up">sold my holdings>made my profit, and
was a Happy Camper. I will NOT be participating
in the class action, however I had a feeling back 
then when I was reading their website and saw 
some weird changes being made that something 
was a bit "fishy" as they say...

Unfortunatley, in this day and age, whether you
are a patient or investor
the Same RULE applies:

"Caveat Emptor"