#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  ??

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#80~ Dr Cheney "corrects" youtube Video !!! +more

VERY IMPORTANT CORRECTIONS TO READ FROM DR. PAUL CHENEY ON AN INACCURATE YOUTUBE VIDEO OF HIS XMRV POSTER PRESENTATION AT XMRV WORKSHOP - You many repost these comments as long as they are attributed to Dr. Paul Cheney (the video has now been removed).

‎"My biggest problem with this U-tube video was the emphasis on "heart failure" as opposed to heart dysfunction or "LV diastolic dysfunction" which predisposes to orthostatic intolerance rather than death by heart failure which is very rare... in my select cohort. My poster never said heart failure was associated with CFS. However, we do know that broadly defined diastolic heart failure does not typically occur until age 72 or later so what will happen to my patients when they get into their 70's is up in the air, assuming they are not treated with things like CSF's before then. There is also the semantic question of how heart failure is defined. If it is defined by organ failure and usually death within 5 years, I don't see this and is likely very rare in the age brackets I see with CFS with an average age of 49. If it is defined by organ dysfunction including heart, GI tract, exercise intolerance, heat intolerance and brain problems etc. produced by low cardiac output then you could use the term heart failure due to diastolic dysfunction in much of my practice. Death by such a functional definition is, however, rare compared to the heart failure patients admitted to hospitals with normal ejections fractions and deemed diastolic heart failure. Such a diagnosis is very lethal over the next five years with only a third alive after five years and virtually all are quite disabled and will remain so.

"Another problem is the "8 of 16 family members" positive for XMRV. The poster actually says 50% of healthy family controls or exposure controls (N=8) were positive. The U-tube video assumed that there were 8 positives when in fact 8 were tested and 4 were positive. 6 of 8 were healthy family members of CFS cases and 2 of 8 were CFS exposure controls and not family members. However, when we get the serology data back, I think the number of family members infected will be higher than 50% and the N value will climb well beyond 16 so this correction may soon be mute.

"I think the U-tube video misses the very important point that the cancer rate is much higher (47%) in the non-CFS, first order family members than in the CFS cases themselves. This will be the big story going forward as to how you answer the question of why this is so. Is CFS a compensatory response to reduce serious disease and early death? I will say that Dr. Jason's assertion (or perhaps it is only the U-tube's assertion) that death occurs 25 years before they should have died is a fallacy as that number is drawn from the average age of all those who actually "died" and not a large group of CFS cases. In addition, perhaps a third of deaths occur by suicide in the young CFS cases and that will skew that number of 25 years before their time.

"The U-tube's final assertion that XMRV is a killer is somewhat exaggerated, at least in CFS. It certainly can be a killer but the U-tube video paints the death rate as much higher than it really is in CFS. In their defense, XMRV is a killer but more-so in the non-CFS but infected cohort which I think will be much larger than CFS itself and drives many cancers to be very aggressive with much higher death rates than would otherwise occur (see Singh et al, PNAS, 2009). XMRV may also be driving the epidemic of diastolic heart failure now seen in those over 70 and most die quickly within five years once admitted to hospitals for heart failure (see Owan et al, NEJM, 2006). XMRV may well be a killer, but the paradox is that not as much a killer in CFS unless perhaps they reach age 72 or above but that is near our present human life expectancy. The most interesting question of all is how did they live that long with such a killer virus and with such severe disability comparable to heart failure?"

Paul Cheney, M.D.
***************************************************
The video in question was entitled 
Third positive MULV study: Cancer & heart failure in XMRV families with CFS" and the link can still be seen below on my wall but the video has been removed from Youtube.
***************************************************




This is all very interesting in the details...
esp. with the knowledge that Dr. Cheney himself
had a heart transplant and gave a talk about 5 years ago where he stated that people with LV diastolic dysfunction, IF they had stayed Vertical and were not Horizontal, like from CFS, that their heart would INDEED probably be dead in about 5 years because of the organ failure due to lack of oxygen because of the OI and POTS.
He stated at THAT time: that it was the Fact that we INDEED WERE Horizontal because of CFS that we STILL Alive....


I specifically remember hearing this because it made a HUGE impression on me personally....
because it was at THAT time I went to a Dr and he tested me for OI and I also started staying more Horizontal to  protect my heart from being damaged from the POTS... which I did experience when I was Vertical.. and as time has progressed each time I am more Vertical
my OI and POTS has become worse and and I am now having to do MORE to specifically prevent the POTS and keep the circulation flowing ... so I'm not sure if I buy TOTALLY his reply.. I think a LOT needs to be studied as to if the person is indeed XMRV +Positive or if they have CFS, but are XMRV -Negative, and what age  they had their Triggering Event .......


There seems to me to be quite a bit yet to be Clarified.. as Dr Cheney can ONLY speak for his current cohort, which does not include all of the 4 million with CFS in the USA, let alone the 17 million in the world.


I guess I will soon know which category I settle into.. As I had my Triggering event when I was 38, but "pushed myself between relapses" until I heard his talk about staying Horizontal to preserve the heart... As I am already 61, it will be interesting to see if I indeed only live to 72, or MY Family average which is closer to 90.
I definitely will NOT commit suicide and will go out kicking... I have already had too many friends die by suicide that had nothing to do  with CFS, and I have had Cancer on BOTH sides of my family...my mother by non-hodgekin's lymphoma, who had a mild form of RA, and my brother also has a variant of another immune system disease.


Either Way, these do not paint a pretty picture for "The Golden Years" even after working for 17 years in a hospital... Maybe if Dr Cheney could get a "Charitable Backer" he would make his Research info "more easily accessible" to the patients that have already been sick for 25+ years but "can not afford to go see him" and do all of his tests "let alone get Rx'd any Cell Signaling Factors" to help with their heart issues.. By not making his info MORE Publicly accessible to those that REALLY need it.. He is actually making things more confusing for us.
I would REALLY like to see him care MORE about the other millions of CFS patients out there that hang on his every word, but only give us dribs and drabs, cuz we can't afford to subscribe to this newsletter...
So, I think he is "fine-tuning" his wording now...

Mainly because~ here we go again...to the CDC's intentional poor choice of a name for this illness and their intentional covering-up of it's prevalence for the last 25 years... Since MOST Dr's did NOT know what we had, most of us could not get a Proper Diagnosis and thus we could not apply for Disability, and now that we have a Diagnosis, Soc Sec says we waited too long to apply... what? If I am disabled now, and I have my proper quarters in, I should be available to qualify for Disability~ Period.


So until we reach 65 we are stuck with NO medical insurance or income. This is another disgraceful situation and reality especially for those that live alone and tried to play by the rules all of these years.. Even without XMRV, again the CDC "Can't Detect Crap."...and leaves us stranded and uncared for now because we could not be diagnosed because they have been using the WRONG Definition..........

HOW MANY TIMES DO WE HAVE TO SAY THAT ??

I will not declare that I am depressed simply so I can get Disability because I am more "Ticked OFF" and VERY Disappointed in our Dept of Health and Human Services and the National Institute of Health and the CDC that were set up to "care for  the Health of their citizens" and they have Failed us in the extreme !!!
Adding "Insult to Injury" ......

 This is  Invisible Illness Awareness Week -- half of Americans live with a chronic health condition, and 96% of them are "invisible" -- even to our Government to whom we have paid taxes all the years we  WERE able to work... and what's with all of the "Job Fairs" ONLY for those that can stand in line for 5 hours... How about "caring" to HELP those of us that want to work~ but are bedridden... Our brains and laptops still work VERY well.. Where are the Job Fairs for us? Are we left to get scammed by a Craig's List job offer? How about some HELP for the Disabled that you have DENIED Disability to... so we can Happily pay some taxes and NOT end up living on the street....

The Devil is in the Details and everyone has ignored 17 million details.......LONG Enough !!!

#22~ Free Tidbits from Dr Cheney Research

I am hoping that we can find a way
to contact Dr. Cheney and let him see
that with holding info from already
gouged and belittled ME/CFS patients
that are already having to decide
between meds & food after YEARS
of no help, no insurance, no disability,
many no family, etc etc, is actually
MORE Mental Cruelty..so if you figure
out a way for us to contact him PLEASE
let me know...

in the meantime here are some tidbits
from his NEW research site...
He updates them frequently so I will
try to add them to the list on the side
and see if they update. If not, you'll
just have to check back about once a week
and see if he's uploaded a new one..

I see that there is info on many different
even within his paid section, so we CAN
get some info just not ALL of it...
I know this "sucks" but I know he
needs the Research money also...
...what to do???

In the meantime we can gleen
what we can from his expertise & research
and see if we can find a way to maybe
talk him into not penalizing the patients
that have already suffered enough
for the last 25 years...

So here are the different links
with some info I have located:

Public blog 

Subscriber's Intro

Cardiology

CFS Diet

Epidemiology

Hormones in CFS

Stem Cell Therapy 
This tells me he IS using
Placental Stem Cell implants

Treatment

XMRV- evolution, flu shots, etc

I know this probably leaves you
with MORE Questions..
But hopefully it also gives you
a bit more info...
Some days we live by the Nuggets that
are tossed in our direction and we try to
make sense of things like good detectives do.

I am posting these  NOT to frustrate you
but because I found some Nuggets that
answered a few things for me and I sincerely
hope that you will also... if you ARE able
to subscribe to his newsletter, I sincerely
HOPE that you will reply to my posts and
maybe feed us some MORE additional
nuggets to let us piece this puzzle that is
our lives a little more together...

Knowledge is Power...
may we gain a little more EVERY Day.