#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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#102~ *NOW is the Time* to HELP the UK ♥

UK~ Dept of Health Protest White Paper Consultation

Join us in this UK protest to the "NHS choices White Paper Consultation"
which closes Jan 14th, 2011.


On the heels of the UK + London Blood Ban, they know ask us to help them by quickly sending some emails. Please do so ♥

Many of our ME/CFS friends in the UK could REALLY use our Help Right NOW.

If you in the UK, you may write in as a patient. 

If not, you may write in as a 

Patient Representative/Advocate. 

After you read this the white paper linked 
within this post and written by our friends in the UK that need our Help desperately I have NO doubt that you will be Easily Able and Willing to quickly use their "Sample Letter" to create your own and send it off to the UK to HELP or Fellow Friends that NEED our Help at this IMPORTANT TIME. We ask them for help when we have campaigns, so IMHO, this is one easy way we can help rePay them and help them at the same time. Thank You in Advance for caring about  the rest of your ME/CFS Family in the UK. 

Your HELP is MUCH Appreciated !!!

♥ Thanks much for helping them so we can actually BE UNITED in our  Health CHOICES Around this World regarding HOW those of us that have been abused and mistreated and ignored for DECADES, NOW work HARD to Speak OUR Voices. ♥


Please REPOST Far and Wide!

 HOW to take part and HELP.

- Full instructions are in the links BELOW including "a sample cover letter"

NOW IS THE TIME - to say IN THE UK 
what choices you want for treatment of ME. (please HELP Them)

The NHS are asking us what choices we want in our health care choices
   (Just as in the USA we are participating with the NIH State of Knowledge)

on StoneBird http://www.stonebird.co.uk/

Dr Speedy's Nice Guidelines Blogspot
http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

****************************************
This reply to the White Paper has been written by patients for patients 
and is suitable for all levels of severity.

The discrimination and inequality in the current system is unacceptable 
and a breach of our rights. We call for an end to this
discrimination, and our right to be involved in the 
planning of our health care services to be honored 
and the patient`s voice BE HEARD loud and clear.

We hope we have stated the views, concerns and 
bio-medical needs and choices we want, 
not only in diagnosis, 
but also in treatment and social care.

We as patients feel that the Lightening Process (LP) , 
Cognitive Behaviour Therapy (CBT) 
and Graded Exercise Therapy (GET) 
ARE no LEGIMATE choice at all. 
We want equal access to appropriate specialists such 
as neurologists cardiologists, immunologists and a 
fair diagnosis using the Canadian Guidelines, with correct testing and treatment.

This is the choice WE WANT, 
not harmful CBT and GET which our shown by patient surveys 
to worsen our conditions. 
We condemn the Wessely school and their vested interests, 
and dominance in the NICE guidelines as an
unfair representation 
of the facts which leads to discrimination which is why they 
have been declared unfit for purpose.

The needs of the severely ill are neglected, with no home service 
often the most in need get the least service. because their
disability does not allow them to access services.

We call for "equal access for the 25% of patients 
who are severely ill bed and house bound who have no access 
to choice for ME treatment or any other health care needs." 

Correct services need to be provide via
home visits 
from all specialists involved in care. 
Otherwise, the severely effected will continue to suffer discrimination 
in accessing appropriate bio-medical treatments.
**************************************
Let your voice be heard loud and clear, the more who reply the stronger the message is for ALL of US all over the World !!!!

Now published ready for downloading and sending with full instructions in pdf

on StoneBird http://www.stonebird.co.uk/

and also on Dr Speedy's Nice Guidelines Blogspot

http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

*********************
By snail mail to :
Choice Team, 11th floor, New King’s Beam House, 

22 Upper Ground, 

London SE1 9BW.

Below is a sample for your email or letter...
Let them know if you have made additions, 
use BOLD so they can find them easily.

************************************
Dear Sir/Madam

I submit the following document for inclusion in the white paper consultation,
I have submitted research links in the document which support this
submission and ask you not to reach any decision regarding provision of choice for ME patients without fully exploring this evidence.

Yours sincerely,
Your Name
**********************************************
Please Repost Far and Wide

Thank You~
"ME Choices Team" from the UK.


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#101~ Letter from Annette Whittemore, WPI

Turning Today’s Discoveries Into Tomorrow’s Cures

January 1, 2011

XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminant 


The recent proclamation that “XMRV is not the cause of CFS,” came from an individual who did laboratory experiments to show how PCR experiments can become contaminated. These results have nothing to do with the reality of a disease or the methods used by those who have detected XMRV in the blood and tissue of patients found to be infected. The positive studies, which cannot be explained away by PCR experiments, are those which have used multiple methods to show that XMRV is a live replicating gamma retrovirus in human blood and tissue samples using the gold standard methods of viral isolation and antibody testing, in addition to PCR.

Unsupported conclusions, such as the one offered by the Wellcome Trust spokesman, often create sensational headlines but do little to move science forward. Authors of the positive XMRV studies have been extremely careful not to claim causality, realizing that more scientific research is required to make such a statement. However, one fact still remains clear. Not one of the negative studies changes the results of the scientific research done by Lombardi et al., Lo et al., Urisman et al., and Schlaberg et al.

The WPI-led scientific study, which rigorously ruled out contamination, revealed high associations of gamma retroviruses with physician-diagnosed CFS patients, using four different methods of detection. Recent commentary associated with the negative research papers on XMRV, which used only one testing method, claimed that these studies proved that XMRV was not the cause of human disease. On the contrary, what the authors of the “contamination studies” confirmed is something that most experienced scientists already know; there are risks associated with using PCR if one does not properly control for contamination. They cannot conclude that other research groups had the same problems or that “XMRV is not the cause of CFS”.

Most significantly, the recent Retrovirology publications failed to address the most
important pieces of scientific evidence of human infection in the previous XMRV studies, including the fact that XMRV positive patients produce human antibodies to gamma retroviruses, XMRV integrates into human tissues, and infectious virus has been cultured from the blood of hundreds of patients with a diagnosis of Chronic Fatigue Syndrome and M.E. Humans do not make antibody responses to mouse DNA sequences from contaminated lab experiments. The Retrovirology studies only point out that XMRV research cannot be done in a mouse laboratory without extreme caution and should not rely solely on PCR methods.

Many researchers realize that the question of gamma retroviruses and human disease cannot and should not be dismissed lightly. Retroviruses integrate into their host’s DNA causing life long infection. Human retroviruses, such as HIV and HTLV-1, are causative for immune deficiencies, neurological disease and cancer. Other studies using mouse models of Murine Leukemia Virus infection, a close relative of XMRV, have shown significant tissue involvement soon after infection, resulting in many physical symptoms of disease including cognitive deficits and immune deficiencies, symptoms which are well documented in patients with XMRV associated diseases. Animal studies involving XMRV demonstrate that the virus moves quickly away from the blood to various organs within the body, such as the spleen, lymph nodes, GI tract, and reproductive organs. This helps to explain why the virus is difficult to detect in blood even as it replicates in the tissues of those infected.

Many anxious patients have asked, “Where do we go from here?” and “Is this the end of XMRV research?” The answer to the second question is an unequivocal “no.” As to the first question, a quick check of the status of ongoing research in various labs confirms that the research groups who have been working on XMRV over the past year are still hard at work developing better assays to check the world’s blood supply for the new retrovirus, finding correlates of immune dysfunction, engaging in animal studies, extending their findings to other groups of patients, and in general, enthusiastically continuing their research. They understand that novel scientific discoveries, which threaten current dogma, will continue to be challenged until the evidence can no longer be denied. For instance, there are still those few who question the fact that HIV is the cause of AIDS. It took Nobel Prize winner, Dr. Barry Marshall, 17 years and three trials in which he infected and then cured himself of H-Pylori associated ulcers, before the medical world would accept the fact that the bacterium causes the disease. Today we are engaged in a new battle to prove that human gamma retroviral infections, such as XMRV, are underlying pathogens in neuro-immune diseases and untold cancers.

It is clear that more research must be done to clarify the role of gamma retroviruses in human disease. However, when a pathogen such as XMRV is found in over 80% of those tested with the same diagnosis, causality is clearly a reasonable hypothesis that begs further scientific and medical research. It is a known fact that important questions of causality can often be answered through well designed clinical trials. For those who have suffered for years from these debilitating diseases, novel drug trials cannot begin soon enough.

WPI’s collaborative research projects are revealing the infectious and inflammatory nature of neuro-immune diseases, providing strong evidence against the use of CBT and exercise therapy as rational “treatments” for those who are ill. Such knowledge underscores the urgent need for much more private and federal funding of biological research to provide diagnostic tests and effective drug therapies for the millions who are ill, stop the spread of infectious retrovirus(es), and end the devastating cycle of disease.

Annette Whittemore
President
Whittemore Peterson Institute

http://wpinstitute.org/



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