#103~ XMRV-Bloggerama Report

Howdy all ~


Sorry for my delayed response.. I have been in the middle of a BAD FLARE for the last 2 weeks, all viruses flaring and unable to hardly do anything except sleep and barely get my food to eat in between 15-18 hour blurs... losing track of what day it is let alone what time of day.

The other day since it has been dark during the daytime recently, I also most gave Thanks thinking I was waking up during the day and was about to call a friend so I could actually HEAR a Human Voice~ TV and radio do NOT count...as there is no REAL PERSONAL INTERACTION THERE~
Only to find out that it was NOT 10 after 8 in the evening.. but *Sigh* it was actually  20 minutes before 2am~ Oh well.. there went another day...

My internet connection is SO slow that I can barely do anything while I am awake.. and doing this blog will use up my ENTIRE TIME of being awake tonight..
Never the less, I give Thanks that I HAVE an internet connection as slow as it is..
(while I write the Egyptians have had their internet connect CUT-OFF)
Life and our attachments to physical things is SO Ephemeral..
Please Be Appreciative for what you DO Have and acknowledge the difference between what we NEED and what we like,
and what is Necessary for Life and what is an added blessing..


Honestly, it is rather bizarre living in the Center of a HUGE City, yet  feeling and existing,
like I am  living the life of a hermit in the mountains.. as only getting new food ONCE
every 3 months makes it feel like that.. and makes getting anything FRESH a Real Treat and Rare.. Life goes on outside of my existence...
I hear about it on the news and from the occasional friend that does call..


When conscious, I do try to be an advocate for those with my illnesses, but all the while.. knowing I do NOT have the family, or money or medical coverage or back up system, let alone energy to allow me to  take advantage of any of the new clinical trials that may be coming out soon...that might be able to stop this illness in its tracts..


ALERT: Our society and health delivery system "Does NOT Deliver"....
They would rather HIDE the fact of our existence, drop us OFF the unemployment rolls so we are NOT counted. The Health CARE System does NOT Care about YOUR Health. NOTHING has changed since Pres. Obama's mother was dying and fighting the insurance companies on the phone on her death-bed. Today we have not only been ignored, but the HEAD Governmental Agency of numerous countries is denying that our illness EXISTS.


Science is about ready to catch up with the Truth, but the "Flat-Earthers" are STILL in DENIAL of the existence of the 3rd Human Retrovirus and the part it plays undermining our immune systems allowing us to be assaulted by many other Diseases and cancers attacking not only us, but also our descendants..
"It IS Showing UP" Not only in our Medical Records but also in our DNA.

I am NOT a retrovirologist, but I did work in a hospital for 17 years and have studied enough medical modalities and been a student of Life, Long Enough to know that this bugger is REAL and MILLIONS *ARE* being infected and GENERATIONS ARE/WILL BE INFECTED and EFFECTED. 

The Greedy are INDEED killing us and 

until one of THEM is infected NOTHING will be taken Seriously~ Period. 

UNTIL somone IN Power *gets it* and I do 

NOT mean Simply understanding it... will Anything Be DONE.

The media has been told "Hands-OFF," and 

you Wonder WHY the sick MUST Blog ???

I am about to make my Last Will and Testament and will be donating the sum of what little I have left to the Whittemore Peterson Institute so they can continue their SERIOUS Research into the Cause and Treatment of this Disease and the Millions it is Effecting ALL over the World. Bless the Whittemores, Dr. Peterson, and Dr Judy Mikovits and ALL who Help them. Please do NOT forget Dr Cheney and others who have who have also donated their LIVES to Helping us and continuing their Research. Bless those who donate to continue the research by those who are doing this MOST IMPORTANT work. Bless the ONLY REAL Investigative Reporter, from the Wall Street Journal Health Blog,  to date, that has the Integrity to cover the TRUTH of this PANDEMIC, Amy Dockser-Marcus, for she knows what it is like to be the victim of a ignored disease.


It has taken my computer over an hour already just to write this amount down...
I am tired and weak and must eat something NOW before I sleep my next 15 hours....

Thank You ~CDC and NHS~ for the MANY DEATHS that YES~ WILL BE as a Direct Result of YOUR Negligence over the last 25 years.. Yes, many others have been complicit with you, BUT had YOU had ANY INTEGRITY at all... you Literally Could HAVE changed the course of History, but you chose NOT TO DO SO...

At this point, I personally blame Dr. Reeves, Dr. Strauss, and Dr. Fauci in the USA, and Dr. Wessely and ALL of his collaborators in the UK for undermining any REAL Research that was being done.. The Lightening Process is just another form of CBT that does NOT cure ANY Retrovirus ~ PERIOD.





For those still living~ PLEASE STOP arguing about the fricken NAME and SUPPORT the REAL Work of RESEARCH about the Disease and finding a CURE or a Way to HALT it's Progress...

The DEAD do NOT care by what name you call their illness... Those holding up the Real Research do NOT care HOW Many things we Test Positive for.. NOR how many are sick or how many lives/families are being DESTROYED, ~ NOR how much $ this is costing ANY of OUR ECONOMIES Worldwide... 

For just ONE of my illnesses, ME/CFS, the economic cost to the USA is $20 Billion a year, yet there is less than $10 million a year spent in Research for this illness...


I will leave you now with just a few of the blogs written for this year's~

XMRV Bloggerama. If you know of any that I missed, please add them in the comments section, OK, and I will add them to my list and to the bloggers list. Thank You.


I DO have links for most of these bloggers in the column on the Right-side of this blog.  Please NOTE, that these bloggers are from AROUND the world and come from ALL walks (beds) of Life...

Participating Blogs:

Many of these are novice bloggers, some are veterans and others are written by partners of sufferers. Everyone of these writers needs to be congratulated for using up what precious energy they have to help raise awareness for you and me. (per XMRV Bloggerama Organizer)


~The Relationship of XMRV to CFS and M.E.
http://slightlyalive.blogspot.com/2011/01/relationship-of-xmrv-to-cfs-and-me.html

~They Will Hear Our Whisper

http://x-tremedenial.blogspot.com/2011/01/will-they-hear-our-whisper.html

~XMRV-It's All Just Coincidence

http://xmrv-bloggerama-day.blogspot.com/2011/01/its-all-just-coincidence.html

~Treating XMRV

http://treatingxmrv.blogspot.com/2011/01/back-to-work.html

~The XMRV Hunt and Me
http://itsonlymeitsnotmymind.blogspot.com/2011/01/xmrv-hunt-and-me.html

~XMRV: Frequently asked questions
http://cinderbridge.blogspot.com/2011/01/xmrv-frequently-asked-questions.html

~Wazzup XMRV!
http://www.pugilator.com/awareness/wazzup-xmrv/

~XMRV: Why Biased Reporting Belongs on the Slush Pile
http://dancingwiththesandman.blogspot.com/2011/01/xmrv-why-biased-reporting-belongs-on.html#more

~Questions +Answers: Alphabet Soup
http://nopostergirl.com/2011/01/22/questions-answers-alphabet-soup/







~ME/CFS XMRV Bloggerama day
http://www.johnallsopp.co.uk/blogViewer.php?blog=1988

~WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE
http://lookingatlyme.blogspot.com/2011/01/we-havent-heard-last-of-xmrv-mecfs-lyme.html

~XMRV, brought light/hope to CFS/ME Patients!
http://1lito.blogspot.com/2011/01/xmrv-brought-lighthope-to-cfsme.html


~The Story of My CFIDS
http://wecanstillblog.blogspot.com/2011/01/story-of-my-cfids.html

~Conscientization
http://glamsticks.wordpress.com/2011/01/20/conscientization/


~ME/CFS XMRV Bloggerama day
http://www.johnallsopp.co.uk/blogViewer.php?blog=1988

~The Relationship of XMRV to CFS and M.E.
http://slightlyalive.blogspot.com/2011/01/relationship-of-xmrv-to-cfs-and-me.html

~WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE
http://lookingatlyme.blogspot.com/2011/01/we-havent-heard-last-of-xmrv-mecfs-lyme.html

~XMRV, brought light/hope to CFS/ME Patients!
http://1lito.blogspot.com/2011/01/xmrv-brought-lighthope-to-cfsme.html

~XMRV and Hope
http://frommetoxmrv.blogspot.com/2011/01/xmrv-and-hope.html


~XMRV - Do You Have It?
http://2hope4acure.blogspot.com/2011/01/xmrv-do-you-have-it.html

~XMRV linked to ME/CFS
http://givenmeathorn.blogspot.com/2011/01/xmrv-linked-to-mecfs.html

~XMRV Bloggerama Day
http://xmrvandme.wordpress.com/2011/01/18/xmrvbloggerama/

~XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~XMRV and M.E./C.F.S.: summary and links
http://nighearain.wordpress.com/2011/01/20/xmrv-and-m-e/

~XMRV and Hope
http://frommetoxmrv.blogspot.com/2011/01/xmrv-and-hope.html

~XMRV - Do You Have It?
http://2hope4acure.blogspot.com/2011/01/xmrv-do-you-have-it.html


~XMRV linked to ME/CFS
http://givenmeathorn.blogspot.com/2011/01/xmrv-linked-to-mecfs.html

~XMRV Bloggerama Day
http://xmrvandme.wordpress.com/2011/01/18/xmrvbloggerama/

~Learning to Live With CFS: XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~Whittemore Peterson Institute Leads ME/CFS Research
http://mecfsfromme.blogspot.com/

~XMRV – British Science Never Looked So Poor....
http://www.cfstheresistance.com/british-science-never-looked-so-poor.php

~XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~XMRV and M.E./C.F.S.: summary and links
http://nighearain.wordpress.com/2011/01/20/xmrv-and-m-e/  

~ME/CFS has MS and AIDS-like Clinical

http://lookingatlyme.blogspot.com/2011/01/mecfs-has-ms-and-aids-like-clinical.html

~Living With Chronic Fatigue Syndrome:

http://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/29/reflective-travails/

~CFS: Patient Advocate

http://cfspatientadvocate.blogspot.com/2011/01/invest-in-me.html

~CFS Central:
http://www.cfscentral.com/2011/01/go-ahead-make-my-day.html

~CFS'nGay:

http://cfsngay.blogspot.com/2011/01/art-4-xmrv.html

~CFS Chronicles:

http://cfschronicles.blogspot.com/


some related articles of Interest:

~Even Before XMRV (10/2009) *the WHY* of the  CDC obfuscation was Obvious: 

http://www.oslersweb.com/work4.htm

~Nice Guidelines Blog:

http://niceguidelines.blogspot.com/2011/01/must-read-if-you-are-xmrv-positive.html

~Crystal structure of XMRV protease differs from the structures of other retropepsins:

http://www.nature.com/nsmb/journal/vaop/ncurrent/full/nsmb.1964.html#additional-information

*********************************************
 Please BLAME *ANY ERRORS* in the blog on ALL of my Viruses and Retroviruses that are Currently Flaring... They Thank you...
******************************

If you missed your chance to blog for XMRV Have NO Fear~ You CAN still participate :-)
ON the participating blogs above - "if you would visit each one in turn and leave a comment, this will help raise the blog's profile on *Google,* which in turn will increase its public visibility."

"There is also another way you can help. By entering Google http://www.google.com/ and typing XMRV in the search window you will be presented with the top ranking XMRV articles. Find the ones that have published positive and accurate information and leave a comment. In future, you might want to consider not leaving a comment when you read a negative 'blog' article. Visiting and commenting on some of the obvious attention-seeking blogs (ie. those that bate sufferers with a view to increasing hits), only raises their profile, which we want to avoid. Commenting on online news media sites is a good thing, especially if the information they provide is inaccurate. It's is a good opportunity to put the record straight and your comment is likely to be read by a larger audience."
~per: http://dancingwiththesandman.blogspot.com/2011/01/xmrv-bloggerama-how-can-you-help.html

It has been 7 hours so far just creating this much~ non-stop, 
except for computer interruptions.. NOT on my part.
I have NOT eaten YET and am exhausted now..
How are we to survive ???

PLEASE Show your Support for ALL of the Many Hours that these bloggers have put into their blogs and Follow them as a way of showing Thanx ~ KNOWING that at least someone is reading your blog makes it feel worth all of the energy  and effort it took to write it.

A reminder of decades past~ that are still with us sadly...
 

"If they looked at AIDS the way they looked at us, they would have said, well, pneumocystic pneumonia doesn't matter, because everybody doesn't have it, and it doesn't cause AIDS. And Kaposi's Sarcoma doesn't matter, because everybody doesn't have it, and it doesn't cause AIDS. That's the way they treat all of the biomarkers and diseases we have."--Mary Schweitzer.

Mary Schweitzer has been elected by the USA patients as one of 2 of their *patient-reps* on the NIH Steering Committee for the upcoming State of Knowledge Conference for ME/CFS in April, 2011.

 In 1980's thru the 1990's HIV has been argued as a "smoking gun."
So we are facing what HIV/HTLV-III patients went threw in 1980-mid 1990's
It is well documented in "And the Band Played on"~ and guess what.... 

THE BAND IS STILL PLAYING ... and sadly it is playing a dirge to the deaf.

 Please NOTE that sadly our illness surpassed the numbers in this movie LONG AGO~


We are about to have *Another Workshop/Conference*

Do you REALLY think that any Progress will be made ?

Banning ME/CFS patients from Donating blood will NOT stop XMRV from being IN the Public Blood Supply.. NOT when there is ALREADY in the USA alone... an estimated 10-20 million asymptomatic XMRV carriers are CURRENTLY spreading it and donating blood.

And that is ONLY from ONE of the illnesses that seem to be linked to this retrovirus. There are many other illnesses also linked and so far all of those with Lyme disease tested have shown Positive results for XMRV+

Currently there has been shown a link to not only ME/CFS, but also and aggressive form of Prostate Cancer,  Autism, Lymphoma, Lyme Disease, Atypical MS, GWI, and even Breast Cancer.

~Support the WPI Research NOW.

~Demand that your Government also support Valid XMRV research and treatment NOW.

-Want to Support Your Troops ?
~DEMAND that your Gov't CLEAN/screen the public blood supply NOW.
-WHO do you think has been getting a LOT of the transfusions lately ?

Our blogs will remain LONG after WE are GONE~

Are we crying in the dark ?

Is anyone listening  ??

ShareThis

#79~ CFSAC Letter Time~ "Crimes and Dimes"

Kathryn has given me permission to post her letter to this blog for your education......
**************************

   For printing and dissemination at CFSAC Oct. 12-14, 2010:

   Dear Committee Members, President Barack Obama, Sec. Kathleen
   Sebelius, DHHS, and Director Collins, NIH, and Senate HELP Committee

   CRIMES AND DIMES
 
   The NIH and CDC have willfully and criminally ignored their mandates and over 5,000 scientific studies of patients with CFS, which was originally M.E. (Myalgic Encephalomyelitis), which they intentionally mis-named in order to cover-up sporadic outbreaks of ME. This was done for at least two reasons:  First,  CFS/ME arose as HIV/AIDS was killing people and the CDC could not mentally manage a parallel infectious disease that the public would learn about and demand answers. The CDC had the mental problem, not us patients. 

Secondly, the CDC also knew how disabling ME could be, making more people eligible for medical care and disability benefits along with the burgeoning list of HIV/AIDS patients. Their disregard of our care must have been sanctioned by very powerful, higher echelon government agencies (NIH?, DHHS?); I don't believe they could have done this without it.

   These inhumane violations of our civil right to disability benefits, appropriate testing and treatment trials has meant 30 years of possibly criminal neglect of the American people. They have violated their own mandates to research and define CFS in a scientific and responsible manner.

   Now Reeves has been transferred...so what!? He is still publishing garbage based on his erroneous, misleading "Empirical Definition" on almost a weekly basis, and getting away with it. Who are the scientific, clinical peer-reviewers of the psychobabble he gets away with; what are their inherent interests in perpetuating the myths of child abuse, psychological problems and lack of neurological and immune system symptoms in this devastating disease?

    NIAID is setting up multi-centered clinical trials. The Question of NIH Director Collins assured patients at the recent XMRV conference of Sept. 8-9, 2010, that "we are on track. Things will happen." The QUESTION of the Day is: Based on WHAT DEFINITION? The CDC's depressed or wrongly diagnosed GA cohort, selected by random phone calls? 
The Canadian Consensus on ME/CFS? 
The 1994 Fukuda definition? 

Only one is acceptable: 

The Canadian Consensus.
 
   At the same meeting, Dr. Gottesman, Dep. Dir., Intra-Mural Research, NIH, said there will be more funding and more publications, explaining there was a "lack of concrete scientific, clinical and medical findings and published papers" .... does he SELECT OUT the 5,000 CFS publications, or is he just as ignorant as the CDC's scientists? Is he also blind or willfully ignorant? He was clueless out the patient's abhorrence of Strauss and Fauci's past actions towards us, so he obviously has never read Hilary Johnson's "Osler's Web", either. This brilliant history of the CFS criminal saga should be required reading for everyone from President Obama, to Secretary Sebelius, Director Collins,  Director Friedan (CDC) and whomever gets the new post as head of the CDC's CFS research
program, before any more damage is done to us.
 
   Gottesman did say that the "Alter/Lo publication will change everything for our illness." Maybe we could start by getting the dentists and psychiatrists now on the CFS research grants team replaced immediately.  
Dr. Peterson was at this meeting, and informed Dr. Gottesman that the major researchers of CFS are not getting funding. The patients in attendance there stated the research grants process for CFS is flawed and needed fixing.  There are four research teams that I know of that could be funded immediately: Dr. Nancy Klimas, Dr. Ila Singh, Dr. Paul Cheney and the Whittemore Peterson Institute. The PANDORA organization needs funding for the already approved New Jersey Center of Excellence. It's needs to be built at once, with clinical trials for treatment of the myriad diseases of th NeuroEndocrineImmune spectrum, including CFS, FM, GWI, Autism, atypical MS, among others. Then we need at least six or more, so patients don't have to kill themselves just getting to one for evaluation and treatments.
 
   DIMES have been spend on CFS, or should I say misspent? We demand the NIH release at least $100M over the next YEAR, to forward the research into the third Retrovirus found to infect mankind. XMRV/MLVs may not be the primary cause, but retroviruses have not been found to be benign and its association with CFS is no longer in doubt, no matter where it came from, no matter that not everyone positive for it is not
(yet) sick.
 
   The CDC has spent about $3 per patient per year on CFS. This is unconscionable for a disease far more prevalent than MS, for one, and just as disabling to certain patients as HIV in their last few months of life.
 
   The dimes need to be exchanged for dollars now...lots of them!
 
    The crimes against humanity must stop. Real science, real research, real clinical trials, and real treatments must begin. Start with the XMRV positive patients, and retest often those sick but testing negative. Just click on 
"Start"!  CLINICAL TRIALS NOW!
 
   Remove the CDC from all CFS related programs; they must be at the NIH's NAIAD division, immediately.
 
   Strong measures must be taken to protect the nation's blood supply; not questions eliciting whether a patient feels 'unwell' at the time.
 
   Let's trade CRIMES for TRUST
   Let's trade DIMES for DOLLARS
 
   Let's do it together. NOW IS THE TIME.
   From: We Three in One Home; All with CFS/ME
   Kathryn Stephens
   Mary L Arispe
   Kathy L. Lorentz
******************************************************





Thank You Kathryn for sharing your letter with all of us..
I agree with Everything you state.. We all know it to be true..
If not now ~ WHEN ???
We have been ignored like my dead car battery...

Support Our Troops? Gee... WHOM do you think has been receiving

the MOST blood transfusions with this tainted blood and they have

been accused that their Gulf War Syndrome is "all in their heads."

Our Best and Brightest.. Now you know how WE feel.....

STOP the Progress of all of the immune illnesses and cancers

that these Retroviruses are allowing to invade our bodies..

CDC ~ Center for Disease Control... Poppycock...

More like "Can't Detect Crap" even after they were SENT +Positive

sample strains of XMRV ... 

You can't find a Peach Pit in an Orange... and That is EXACTLY

what the CDC has been doing by using the WRONG Definition 

all of these years we have been suffering.....

They did INDEED Purposely IGNORE all of the Evidence ever since

the beginning.. and this is INDEED a CRIME against Humanity !!!

If XMRV is SO harmless... maybe they would like to be injected with 

the tainted blood and then let's SEE if it's all in their Heads ??

If you would like your letter to be printed just let me know..
I am hoping this will HELP inform and educate the many that
are unable to watch the CFSAC meetings and yet KNOW what
they have been told by the TOO-LONG Suffering Patients..

#77~ SUMMARY of MEETING: NIH OFFICIALS + CFS Patients + Families, SEPT 7, 2010

The webcast of the 2day 1st ever XMRV International Workshop hosted by the NIH in Bethesda, Maryland will be online in a few days..maybe next week...

In the meantime, I thought you might enjoy hearing about a meeting just prior to the official workshop starting....

SUMMARY OF MEETING WITH NIH OFFICIALS AND CFS PATIENTS AND FAMILIES. SEPT 7, 2010

By Rivka Solomon, with help from Robert Miller  Contact: Robert Miller

On September 7, 2010, at 11 a.m., at the NIH campus in Bethesda, MD, a group of 9 CFS patients and their families met with high-up NIH officials. To my knowledge, this is the first meeting of its kind in the 27 years since I was first struck down with this illness in 1983. 

The meeting was organized by long-time CFS patient Robert Miller. The meeting's CFS participants (patients and family) included: Charlotte, Linda, Sherry, Scott, Marielle, Bobbi, Rivka, Robert and Megan. A wonderful surprise addition to the meeting was Dr. Dan Peterson, of Incline Village, NV, champion doctor of CFS patients and co-founder of the Whittemore Peterson Institute in Reno, NV. The meeting was held just prior to the start of the 1st International XMRV Conference sponsored by the NIH. The NIH officials present included: 

•   Michael Gottesman, M.D. ~  
Chief of NCI's Laboratory of Cell Biology and Director of the NIH Office of Intramural Research     
http://www.nih.gov/about/almanac/historical/deputy_directors.htm#gottesman
email= plotzp@ mail.nih.gov

•   Roland Owens, Ph.D~        
Assistant Director of the NIH Office of Intramural Research and Chief of the Molecular Biology Section in the Laboratory of Molecular and Cellular Biology in the National  Institute of Diabetes and Digestive and Kidney Diseases at NIH.        
http://jgh.hunter.cuny.edu/index.php/component/content/article/6-biographies/95-owens-roland-a-phd.html?directory=18

These are my impressions of the meeting. Any and all mistakes, such as misrepresenting someone's words or sentiments, are all mine. And I welcome any corrections from others.

The agenda that Robert Miller originally set for us went smoothly. It was for a half hour meeting, but in the end we were given a full hour. First, Robert had the patients go around the large table and introduce ourselves, stating how long we have been, or our family member has been, ill. Then he read a statement which included points and issues he felt needed stressing. They focused on, but were not limited to, these two key points:

1. The need for trust building....In the past, our government offices (NIH, CDC) have acted in ways that has eroded our trust in them, from the (rather amorphous) decades of neglect to, most recently, the highly concrete fact that Dr.Judy Mikovits, the scientist who found the link between XMRV and CFS, was excluded from the XMRV Conference line up until patients loudly complained. Robert said that we now need our government to act in a way that engenders our trust in them.

2. The need for funding

Funding is needed for ME/CFS research, clinical trials, and Centers of Excellence (including WPI).

(For the full text of Robert's statement, see below.) 

After Robert made his very salient, well-written points, Dr. Peterson made a statement, and then three additional patients made theirs, each lasting about 2 minutes. (My statement is included below.) Honestly, embarrassingly, I can't recall any of them. Though I do recall feeling very proud to be on the same side as Dr. Peterson. And I do recall feeling very moved by the patients' statements. One woman, the mother of a long-time patient, made a strong plea for attention to pediatric CFS issues.

After Dr. Peterson and the patients' spoke, it was Dr. Michael Gottesman's turn. He told us that he had talked to Dr. Francis Collins just that morning, and that the NIH Director wanted us to know that positive things were going to happen. "We are on track. Things will happen." He did mention that NIAID is currently setting up multi-centered clinical trials.

After he talked, we the patients started with our questions. It was a 1 hr meeting, so there were many topics and I cannot recall all of them. They included (not necessarily in this order):

 - What power and purse strings Dr. Gottesman has as Deputy Director of Intramural Research. He was pointedly asked, Can you make a commitment to us right now for clinical trials? 

Answer: Dr. Gottesman explained that his department, Intramural Research, means research done within the NIH, not outside the NIH. Intramural Research is only 10% of the NIH budget. Intramural Research is where "higher risk" research can be done (I am not sure why he brought up that point, i.e. if it relates to us or not.) My impression was that he felt he did not have a lot of say in deciding on clinical trials. My impression was that he was at this meeting because Dir. Collins wanted someone high up to meet with us, but that Dir. Collins did not have the time (or inclination? Or knowledge of our needs?) to match the person we would meet with what our actual needs were. Others may have a different impression of the situation. Dr. Gottesman did say, in so many words, that the meeting was hastily arranged, and for the short time they had to arrange it, it was pretty good to get someone as high up as he. In terms of funding, he did say, "There will be more funding, and more publications."

- Patients pointedly asked why has this illness been ignored for 2+ decades. When Dr. Gottesman said it was due to a lack of concrete scientific, clinical and medical findings and published papers, patients countered that there are 5000 scientific and medical studies on CFS already published.

- When Dr. Gottesman said that Alter's paper was the first evidence of something concrete (i.e. a virus) for CFS, patients reminded him about Elaine DeFreitus and how her viral findings were ignored and even discredited by the CDC 19 yrs ago.

- Strangely, at least to us patients, Dr. Gottesman praised the former CFS point person Dr. Strauss, saying that both the NIH and CFS patients lost a good fighter for our cause when we lost Strauss. No patients nodded their heads in agreement. Dr. Gottesman also seemed "not to know" about the disappointment patients feel towards NIAID Director Fauci. So we told him we did not feel warm and fuzzy towards him for having ghettoized us to the Office of research for women's health (I don't recall their official name), which has no money.

- Dr. Gottesman noted how dangerous it is to take anti-retrovirals when we have not done clinical trials. And before clinical trials they need to test the meds in vitro. We patients responded with the fact that there are already two published studies on anti-retrovirals that work to hinder XMRV in vitro. (We sent these two studies to Dr. Gottesman via email after the meeting.) I think it was Dr. Peterson who talked about how patients are already doing anti-retrovirals. That that is how desperate we are.

- We talked about how if XMRV or related viruses are a dead end (i.e. not a cause of CFS, and not a cause of anything hurtful to the body), we hope their interest in CFS does not reach a dead end, too.

- Patients discussed the pathetic name our illness was given, Chronic Fatigue Syndrome, and how that very name has contributed to families abandoning their sick family members because of a disbelief that they are really sick.

- Dr. Gottesman talked about how respected Dr. Alter is and how Dr. Alter's interest in our illness and his published study will change everything for our illness. Alter, and his paper, carry a lot of weight.

- When the NIH team (Dr. Owens) said more people were needed to go into the field of CFS research, Dr. Peterson said there are many good doctors who are already working on this, but not getting funding. And patients stated that the lack of funding in general, for CFS, turns off potential researchers.

- Patients talked very concretely about how funding for CFS projects and research are selected and allocated, and how the team who approves CFS research grants is flawed (noting the dentists and psychologists who are included in the team, as opposed to more immunologists and CFS experts).

- Dr. Gottesman said that for our specific concrete greivences, we need to write a letter stating those grievances and concerns and send that to the Director Collins' office. He promised us that it will be addressed and forwarded to the right person within the Director's office. 
*****(If patients are willing to send emails to Director Collins, we ask you to select something from the list of points Bob raised in his statement, found below. Pick the one or two points that you feel most effects or moves you.)


- Most importantly, Dr. Gottesman said he'd meet with us again. And I think 3 months time was suggested. We said we'd like others involved in that meeting, perhaps others from the NIH who we might suggest, due to our specific needs. Any mistakes in this assessment of our meeting are all mine. There is a good chance there are many mistakes, as it was all taken in through exhaustion, brain fog and a poor memory.

Thanks to Robert Miller for organizing this meeting, to Dan Peterson for adding the weight of his years of experience and expertise. Thanks also to the amazing patients and family members who shared difficult stories of years lost to CFS, and to the NIH officials who took the time to meet with us and will hopefully meet with us again in the near future.

-- Summary by Rivka Solomon, with help from Robert Miller

________________________________________

Robert Miller's testimony at the NIH meeting, September 7, 2010 

My name is Robert Miller. I want to thank you for meeting with us today. We are particularly grateful for your work Dr. Lo and for Dr. Alters as well, and the PNAS publication. 

I have had CFS for all of the 25 years that it took the NIH to get to this point. And still, we are only at the beginning of understanding a retroviral role in my illness. 

INTROS

1. Trust Building: The PNAS paper was critical in confirming the Science study last fall which identified a retroviral association with CFS. But the fact that it almost wasna. Even with the first XMRV conference sponsored by NIH, starting today, the researchers that found the XMRV association in CFS were not going to be invited to speak until patients protested. b. So,we present this petition, even though the study was published, because the 1016 patients who signed this petition,and many more will be watching the NIH c. We are also delivering this second petition from P.A.N.D.O.R.A. (PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY)with nearly 1600 signatures requesting a meeting with Secretary Sebelius to address the lack of funding for CFS/ME, and related illnesses. 

2. Funding.

NIH’s record of funding CFS research is near zero. Less than $2 per CFS patient per year. So patients are demanding that the NIH allocate at least $100 million dollars over the next two years to researching CFS, especially the family of retroviruses that you have now identified. 

a.  I’ve heard years of excuses at the CFSAC meetings from NIH representatives that not enough fundable proposals make it through your process. We know that right now you have a stimulus budget. We Say “Build it and They will come”. You have a huge opportunity right now to attract hundreds maybe thousands of proposals on this illness, and you need to be aggressive about it. That means changing the process, expediting the way proposals get reviewed and studies get funded, like you did with AIDS. 


b. There are many lessons from the AIDS epidemic that you published yourselves. [shown in the report]. One lesson is that funding early saves money in the future and certainly could prevent the spread of a debilitating virus. The book that gives an account of the politics behind HIV in America "And the Band Played On" describes Dr. Don Francis, then at the CDC, was turned down for $30 million in funding when he was desperately trying to prevent the spread of AIDS in 1985. That lack of early funding for HIV prevention cost the U.S. government $$$ Billions of Dollars later while addressing the HIV/AIDS epidemic, which we are still fighting.  

c.  We would not be here if the privately funded Whittemore Peterson Institute had not identified the connection between XMRV in cancer and the immune problems (RNASE L defect)in CFS patients. They had to know CFS patient histories to figure that out. That is why it is Key to have doctors like Dr. Daniel Peterson, Dr. Nancy Klimas, Dr. Anthony Komaroff and others working with NIH researchers. We need CFS Centers of Excellence funded by NIH. 

d. NIH and FDA need to drive a clinical trial process for treatments with the end goal of making safe and accessible treatments available as soon as possible. We are already experiencing the AIDS-effect of patients self-medicating with very serious medications, such as antivirals and anti-retrovirals, because many of us are desperately sick and there are no alternatives for CFS patients - none.   

a. I have participated in the only clinical trial approved by the FDA for CFS, the Ampligen (AMP-516 and AMP-511) study. I was on it 10 years ago, And I improved, the data showed efficacy, but still the FDA denied approval. After living in the DC area for 5 years, I had to up-root and move my 10-year old twin sons back to Reno, so that I could access Ampligen again, but yet To This day, I am still one of only a few patients with access to Ampligen. There is no excuse that there is only one trial in one city in the whole country to access the only treatment available. NIH needs to seed this process quickly, so patients have faith that FDA trials will bring them relief. The alternative is chaos like the early days of AIDS. 

 e. Lastly, children with CFS is a very troubling issue. Many recommendations have been made by CFSAC to address the obstacles to real pediatric care and coordination with educators and law enforcement. Children with CFS have to be part of the science. Your PNAS study also compels us to worry about passing this living torture to our children and spouses, and to worry whether every childhood cold will trigger what I have. What would you do if it were your child? 

While I am angry that it has taken decades to get here, I Still have Hope, Because, We are sitting here today, just prior to the First XMRV Conference and because the NIH has confirmed a breakthrough. 

Your speed and commitment will give us our lives back.

Thank you for allowing me to speak here today. 

-- Robert Miller ________ Rivka Solomon's testimony at the NIH meeting, September 7, 2010: 

In 1983, I was 21 when I got mono and never fully recovered. So one day I'm a straight A student leader, a mountain hiker, a global traveler, climbing the career ladder in int'l relations -- the next day I didn't have the strength to brush my teeth. Two decades later, I'm still bedridden and homebound much of the time. Two decades -- because my gov't and the medical community refused to believe my illness was real. Instead of taking me seriously, my illness was labeled "fatigue." The NIH ignored us, which was devastating. But the CDC did worse; They published studies saying CFS was an inability to handle stress, was due to childhood abuse or was an emotional imbalance. (Their most recent study saying this came out just last month.)

Last wk, 26 yrs after I got sick, my blood was tested and, yes, I have the human gamma retrovirus XMRV. My next step is to take dangerous anti-retroviral meds, even though, unfortunately, clinical trials have not been conducted.

I'm still bedridden much of the time; it will take me weeks to recover from the energy required for this meeting. But I am so glad to be here.

I am here to ask each of you, personally -- you (point or look at each NIH rep) -- to help me and the 1-4 million Americans with CFS that I represent today. 

- We want you to fund fast-track clinical trials for treatments, medications. - We want you to fund Centers of Excellence just for this illness, starting with the WPI in Reno, the folks who discovered this link between XMRV and CFS. 

We have spent the last few decades abandoned by our gov't. Abandoned. Please do what is right and help us. Now. Finally.

Lastly, I want to publicly thank Dr. Dan Peterson for believing us and for dedicating his life to us. And I want to thank my mother, who has stood by through the last 2 decades. (She was present at the meeting.) -- Rivka Solomon

________________________________________

Closing Note: In a post-meeting email exchange between Deputy Director Gottesman and CFS participant Rivka Solomon, Dr. Gottesman said he would be forwarding Rivka's 
"Dear Secretary Sebelius, Dear Director Collins" singing video to NIH Director Francis Collins. 
(Video found here: 
http://www.youtube.com/watch?v=8t1Xqp1LDxM ) 

MAY BE REPOSTED -- PLEASE DISTRIBUTE WIDELY  

#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 !!!

#30~ CFSAC videos on youtube so far

I'm sure MORE will surface, but until then
and until the archives show up on the NIH
website and/or the text comments....

Here's all of the youtube videos I have been
able to gather so far.
I have tried to put them in viewing order..
They used "Real Player" video player
that gave EVERYONE practically
many problems so Bless the folks that
recorded these which are alot Easier to view.
even if NOT complete...

There were MANY more Public Comments
I want to see again.
I want to hear the part again about and

exactly who said that they were 

told NOT to teach or even discuss CFS 

in the Medical Schools?

and I want to see the TEXT & Video from 

Friday when 5  Committee members 

gave their "Retiring Comments"
and what the NIH had to say, as well as

what the CFSAC recommendations 

were at this point...

Hopefully the official video archives and text
will be available by sometime next week.

Here's enough to "wet your whistle."

10/29/2009-THURS.

FDA testimony-

Dr. Daniel Peterson

Part 1-

Part 2-

Part 3-

Part 4-

Q & A-

Annette Whittemore-

Prof. Coffin-

PUBLIC Comment Section-

Laurel's video-

Name???-

call in lady- GREAT


10/30/2009-FRI





Mike Dessin-

RE: blood bank guy-

I'm sorry this is all that was recorded

but SO many of us were on Such a HIGH
after Thurs that I know many of us 
CRASHED HARD on Friday....
I was all tuned in an fighting with
Real Player as I had the day before
but I just couldn't take it any more
I guess... I crashed also...BUT I left
the computer ON so it would still get
counted. I haven't heard what
the number of webcast viewers was
for Friday anywhere.?
If you know please Comment HERE
and let us know, OK?
And if you read the previous post
you will know WHY we crashed..

There are already MORE articles
that have been published and more
news will come... We need to 
STAY Encouraged all the while
NOT using TOO much Adrenaline
and doing what we NEED to DO
to maintain what Health we DO have
until we hear our next marching orders.

If and when we DO get tested for XMRV
and if we ARE positive... until we get 
put on some new anti-viral that has
been modified to work on XMRV, we 
need to WORK hard to Build ourselves 
UP so we can withstand the rigors
of the anti-viral meds...

Some of them have nasty side-effects...
Not trying to scare you..
but think like "our version" of chemo.
Any time you take a Strong drug
to kill a strong bug there usually
are nasty side effects for the host=you.
Look "how hard" this bug has had a GRIP
on us for so many years.
You think it's gonna go down easy?

So we must build UP our Nutritional diet
& Supplements, like fortifying before battle..
Doing any of this will NOT change what
your test for XMRV will be- it's either
there or it's not...

DO all of those sensible things
if you haven't already started.
You KNOW the list.. I'm not going
to repeat it unless you ask...

Be like a Bear and STORE UP
for the winter~ Healthwise ;-)

#24~ 3Cheers to Hillary Johnson of Osler's Web- OpEd

A Case of Chronic Denial
 
Op-Ed Contributor:  By HILLARY JOHNSON

Published: October 20, 2009

For the FULL Article PLEASE go to the
TNYTimes and read it..OK?

I have placed the Link Below the

brief excerpts..... OK?

Here are a few teasers to get you there ;-)

"EARLIER this month,......"

"That would have been news enough, .......
.........

"The illness became famous after an outbreak
in 1984 around Lake Tahoe, in Nevada........."

"When, by 1987, ...................
.........................................the health 
agency orchestrated a jocular

referendum.....................
....................................  as 
one of the academics "joked."

"As public health officials focused on
................... then as many as 10 million

Americans may carry the retrovirus."

"She has also given the disease a properly

scientific new name..............

"For patients who have been ..............
................................................................

about their illness for 25 years,............."

Hillary Johnson is the author of “Osler’s Web:

Inside the Labyrinth of the Chronic Fatigue 

Syndrome Epidemic.”

A version of this article appeared in print

on October 21, 2009, on page A31 of the
©New York Times edition.

PLEASE GO to the link below to read the

complete article.

Trust me it is Worth Reading.

TNYT article

Hillary asks that we all follow the link to the 
TNYT website, so they see on their page-counters
that the article generated a lot of interest, and
then e-mail it to a friend, to show them
how interesting we found it.

We have been rating well tonight
as the 3nd most emailed article on
the TNYT tracking system...
So Please email this article to your
Family & Friends.. it will help us get 
Better future coverage by the TNYT.

Thanks and GO TEAM GO.