#122~ Restoring ME/CFS Research, Education, and Patient Care to New Jersey

Restoring ME/CFS Research, Education, and Patient Care to New Jersey
CFSAC Public Testimony, Nov. 8th, 2011
By Kenneth J .Friedman, Ph.D.

I wish to inform the Chronic Fatigue Syndrome Advisory Committee and other stakeholders in the ME/CFS Community that there is a window of opportunity to potentially restore ME/CFS research, education, and other, related, scholarly activities to one of this country’s most populated states: New Jersey. The Governor of New Jersey has formed a UMDNJ Advisory Committee the purpose of which is to advise him as to the future of the University of Medicine and Dentistry of New Jersey (UMDNJ). The options range from doing nothing and keeping UMDNJ, the largest, free-standing, academic healthcare University in the United States, as is, to completely dismantling the University and dividing its components and assets amongst other New Jersey academic institutions. The Committee is now willing to accept comments from the public.

The impetus for the establishment of the UMDNJ Advisory Committee may reside in the corroded image of UMDNJ, forever charred into this nation’s psyche, by its purposeful, $35 million dollar, double-billing of Medicare. However, of equal or perhaps greater concern to the ME/CFS Community is the February, 2010 decision of the University to ban ME/CFS research, education and related scholarly activities from the University using the pretext that such activity is not “professional” but rather “personal.” According to that policy, any and all scholarly activity related to ME/CFS may be performed performed by faculty only outside of regular, normal business hours. The policy further forbids use of the University’s portal to the internet for any ME/CFS-related research, and denies use of the University’s email client server for correspondence with anyone about anything related to ME/CFS.

The University’s policy to ban ME/CFS scholarly activity came after two, related New Jersey Medical School attempts to minimize the professional nature of ME/CFS related activities: (1) the New Jersey Medical School refused to consider the Consensus Manual for the Primary Care and Treatment of Chronic Fatigue Syndrome a peer reviewed publication despite its having been reviewed and approved for publication by the Senior Editor of Harvard University Medical Press, Dr. Anthony Kamoroff, and its translation into two foreign languages, and (2) the New Jersey Medical School maintains that five years of service on the CFSAC did not constitute professional, academic service at the national level since individuals without scientific background, such as Magic Johnson has served on Advisory Committees.

UMDNJ controls all three of the state’s medical schools, as well as the state’s only dental school, school of nursing, school of health related professions, school of public health, and graduate school of biomedical sciences. This ban of ME/CFS scholarly activity in the University is, therefore, impacts patient care in the greater New York metropolitan areas, as well as the advancement of ME/CFS research, and healthcare provider education and training throughout the United States. Equally important, however, is the precedent that this establishes for other medical schools and schools training healthcare professionals throughout the United States to establish similar policies.

UMDNJ’s actions are clearly an attack on academic freedom – the right of college and university faculty to pursue their academic interest – and should be opposed on that basis if for no other reason. If UMDNJ wishes to continue as a university, then it must behave as such and afford its faculty the rights afforded to University faculty elsewhere. For UMDNJ to continue as a healthcare university, it needs to comply with the principle of academic freedom.

Of particular concern to the ME/CFS community, is the failure of UMDNJ to honor the CDC’s ME/CFS policy as articulated by its Director in 2006, Dr. Julie Gerberding, who stated, “We are committed to improving the awareness that this [ME/CFS] is a real illness and that people need real medical care and they deserve the best possible help that we can provide.” Why does the Department of Health and Human Services’ continue to provide funding to UMDNJ when UMDNJ maintains that faculty who engage in scholarly activity related to ME/CFS are engaging in non-professional activity? The Department of Health and Human Services continues to give money to a University which knowingly and deliberately obstructs one of its agency’s mandates. Why?

Governor Chris Christie’s UMDNJ Advisory Committee has received testimony from UMDNJ employees expressing the belief that UMDNJ be retained in its current configuration. Current employees may have a vested interest in retaining UMDNJ in its current corpus. Stakeholders of the ME/CFS Community may have a different opinion, since dismantling UMDNJ would remove the ban and restore ME/CFS activities to New Jersey’s healthcare centers. The CFSAC may wish to make a recommendation to the U.S. Secretary of Health based upon the facts conveyed herein and, perhaps, after its own, further investigation.

According to what was published by UMDNJ, comments may be submitted via email to:

The window of opportunity for submitting comments is not specified.
I would not wait long.
Thank-you for your attention.
*************************
Thanks for your Testimony and for supplying the typed copy for the committee.
Send those emails.. Here's a Place WAITING to be Used Properly...
and if used for ME/CFS the Revenge would be OH SO Sweet !!

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#121~ CFSAC this week-Please Read~ THx♥

Please Share and Post Widely


CFSAC Demonstration NIH & CDC
ME/CFS Patients Advocate for Patients

Time:   
Tuesday at 8:00am - Wednesday at 5:00pm
Location:   
Holiday Inn Hotel Washington-Capitol
550 C Street, S.W.
Washington, DC
 ___________________________________________________________
ME/CFS Patients Advocate for Patients :
Email me at bobmiller42@msn.com if you will attend CFSAC for more details
Please SEND an email and let us KNOW you WILL attend either from HOME or in Person.
__________________________________________________________
WASHINGTON, D.C. – On Nov. 8, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) will protest against 25 years of neglect by the National Institutes of Health and the U.S. Centers for Disease Control. The protest will greet members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) just before they begin their bi-annual meeting at the Holiday Inn Capitol, Columbia Room, 550 C St. S.W., Washington D.C.
___________________________________________________________
Patients attending CFSAC Protest will be provided with Shirts and Props:
We will also have access to Wheel-chairs for those needing assistance
___________________________________________________________
Patients unable to attend CFSAC can be with us via the Web:
Make your own signs, shirts and Banners then post pictures on your own Facebook Page and on the Facebook Page for this Event.
We will update you with video from CFSAC as possible, Watch for updates on the websites that will be posting video & information:
____________________________________________________________
Contact via email the representatives from DHHS listed below starting after 5 pm on Nov.7th Eastern and by Nov. 8th. at 8 am Eastern, so we will have their undivided attention AT the meeting.
____________________________________________________________
TO:
nancy.lee@hhs.gov,
BCC:
howard.koh@hhs.gov, and at ash@hhs.gov,
wanda.jones@hhs.gov,
kathleen.sebelius@hhs.gov,
francis.collins@nih.gov,
afauci@niaid.nih.gov,
BCC: to me at hebs1reel@yahoo.com to track the numbers
Thank You !!

Let them KNOW you resent their descriminating against OUR RIGHTS to be able to access the meeting LIVE since SO Mamny of us have Sensory overlaod and Must turn the Audio DOWN and READ the closed captioning~
Have then NOT been listening to the Testimonies for the last many years ???
WHO are the DEAF ones here ?

1) Let them KNOW we will NOT be Silent for another 25 years and it's TIME to PUT these patients First and 2) get some ACTUAL Correct info out to the MDs that treat us out in the REAL World and 3) to start addressing the issue of Disability for those that have Fallen thru the cracks because of their 25years of lack of addressing this disease, 4) and time for the NIH 
to Fund some CLINICAL TRIALS NOW~
5) Treat those w/o Disability that have been sick for 20+ years and STOP this Genocide that is in it's 3rd Generation.. 6) and tell the FDA to leave our Supplements alone !!! 7) Adopt the 2011 CCCriteria for M.E. and 8) FIX that CDC website that is an International Embarassment and source of Abuse for aboit 15 million people.
__________________________________________________________
Those that are able to attend will do our part. We know you will Stand with us, YES ?
____________________________________________________________
Together we will move science forward,
United We Stand, Divided We Stay home for another 25 years.
So get your signs ready in Person AND ONLINE ♥ Thank you All
************************************
Agenda – CFSAC Fall 2011 Meeting
November 8, 2011

9:00 am    (Eastern Standard Time, USA)
Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:10 am    International Classification of Diseases-Clinical Modification (ICD-CM)
                by Donna Pickett, RHIA, MPH
National Center for Health Statistics
10:00 am    Public Comment    Public
11:15 am    Break   
11:30 am     Welcome Statement from the  Assistant Secretary for Health   
                Howard K. Koh, M.D., Ph.D
12:00 pm     Agency Updates: AHRQ, CMS, FDA, HRSA    Ex Officio Members
1:00 pm    Subcommittee Lunch = Subcommittee Members
2:00 pm    Public Comment by Public
2:45 pm    Break   
3:00 pm      Future Interdisciplinary Research for CFS Utilizing a Variety of Scientific
Disciplines: lead by Gailen Marshall, M.D., Ph.D. and Committee Discussion
4:00 pm      Committee Discussion
Past CFSAC Recommendations    by Committee Members
5:00 pm    Adjourn     
*************************************
Agenda -- CFSAC Fall 2011 Meeting
November 9, 2011
9:00 am    (Eastern Standard Time, USA)

Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:15 am    HHS Office on Disability    Rosaly Correa-de-Araujo, M.D, M.Sc.,Ph.D
Deputy Director, HHS Office on Disability
10:00 am    Centers for Disease Control and Prevention Webpage   
Eileen Holderman, Nancy G. Klimas, M.D., and Ermias Belay, M.D.
10:30 am    Break   
10:45 am    Agency Updates: CDC, SSA, NIH-Ex Officio Members
11:45 am    Minimal Elements for Papers-Leonard A. Jason, Ph.D.
12:15 pm    Subcommittee Lunch = Subcommittee Members
1:15 pm    Public Comment-Public
2:15 pm    Break   
2:30 pm    Committee Discussion
Finalize Recommendations by Committee Members
4:30 pm    Adjourn   

****************************************************************
INFO from the CFSAC below, proving they are NOT accommodating patients with "sensory overload" for this meeting that MUST "Read the captions" let alone those with "Hearing Disabilities." THIS is just ONE Reason we are Protesting.... NO LIVE VIDEO this time !!
****************************

Audio Call-In Information
PLEASE Call in and SHOW them the NEED that we ARE Listening.. and we NEED the LIVE video!

The Meeting of the Chronic Fatigue Advisory Committee will be available via AUDIO Lines. The following call-in information will provide access to the meeting via audio lines:

Please dial the participant dial-in number:

Participant Dial-In Number: 1-(866)-395-4129

Please use the following passcodes for each day:
Passcodes:
Tuesday, November 8: 24756185
Wednesday, November 9: 24759937

Please note, each caller can press *0 at any time during the call to contact the operator for support.

There will be an operator on the line to welcome you and each caller will be asked their name and email address (this is NOT a requirement). You will be placed into the conference.

During the lunch hour, callers may hold the line or choose to call back to access the conference.

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#116~ URGENT- Get Out The Vote for WPI NOW !!

CRUNCH TIME IS HERE !!!

We NEED at Least 4,000 MORE Votes, folks !!

We are in 7th place ~ that will NOT do.........

In case you haven't yet looked under the rugs and rocks and begged every friend and friends of friends and every orgnization ou  have ever belong to ~ to Help us and if they Belong to Facebook to Vote for WPI for the Chase community Giving to Help us win the $500,000.00 that will be put towards research and develpoping treatments for millions of patients with the many neuro immune diseases.....

NOW is the time to do it, NOT Tomorrow...

The illnesses that all seem to be linked together under this umbrella include many things with ME/CFS being only ONE of them... and there are 17 million of them. Also included are those with Autism and Chronic Lyme Disease and Asperger's, Atypical MS, Fibromyalgia, and they have also been linked with many cancers including lymphoma and some cases of prostate cancer and breast cancer...

Anyone that CARES about Human Life should be VOTING "Right NOW" on Facebook for the Whittemore Peterson Insititute as they are the ONLY one in the Top 7 that has anything to do with Saving and healing Human LIVES that are in danger and people have been suffering for decades... and now a Generation !

While we are doing this, the President and Founder of the WPI, Annette Whittemore, and the Head Translational Medicine Researcher, Dr Judy Mikovits, have both been in the U.K. in London attending the 6th "Invest in ME" Conference whose sub theme this year is

International ME/CFS Conference 2011

The Way Forward for ME - A Case for Clinical Trials

but  before there can be clinical trials there must be MORE Research $$$ and as we all know thegovernments and states and contries are broke, so this Wonderful Opportunity to WIN this $500,000.00 must NOT be taken Lightly~ Please.. 

THIS IS HUGE 

Today the team went to Belfast for a Conference on Sunday and then they will be returning home on Monday... Please while they are away make them PROUD of us and what we did while they were away... There going around the world Literally to Help us..
Can we do Less to help them Help US ?

They have dedicated the LIVES to Helping us....

Can we not find ways to be EXTRA Creative these next few days to help get another 4,000 Votes ~ Please.. ?

The directions to help are Easy..
Here is a little paragraph that explains how and when you ask your friends and families to even ask their exteneded families and friends please ask them to watch this video that you can include. Here are the directions and the video link ...

Please Help MILLIONS with Neuro Immune Diseases "with 2 clicks."

Voting is open to anyone on Facebook. 

You can vote by going to http://apps.facebook.com/chasecommunitygiving 
Click "like" then locate the Whittemore Peterson Institute by clicking on this link http://bit.ly/mrWckA and Simply VOTE.
Your vote will help them possibly WIN $500.000.00 for Research.

"Please share this" with others and Thx♥
http://www.youtube.com/watch?v=uM8Hs1nuk5I

The government is spending $3.64 a year on just one of these co-infections called ME/CFS... is That what your life is worth ?

Ask Rober Miller, this was his testimony last week at the Federal CFSAC meeting:

Maybe you need to hear a few more testimonies about just this ONE co-infection and WHY we NEED this Research $$$  SO Desperately ~~~

In closing I will wrap up with one more video to show you that  people HAVE DIED FROM THIS Illness that is NOT all in their heads.. Please Help us by getting every teenager you know that is on Facebook to VOTE for WPI because children are getting these illnesses also... I know we can DO THIS but we must REALLY work HARD these next few days... PLEASE....

Remember although thesae videos might only be speaking about ME/CFS and XMRV, that the WPI is also helping Autism, Gulf War Illness ( get every Vet you know to VOTE ALSO) and chronic Lyme of which there are also Millions...

Lest we forget all of the lymphoma cancer patients and all of the families and lives effected by these illnesses which is a LOT MORE than Just the Patients...

PLEASE Remember we need a MINIMUM of another 4,000 Votes to WIN this...

If there are Millions of us sick, WHERE are these votes ?? Find Them Please ~

We BEG you..

More Research can NOT Proceed if we do NOT get this funding...

We must NOT let this Opportunity to Win this Grant slip right through our hands because we did not
"Get OUT The VOTE."
This is a Vote for our Very Lives..

Please everyone from Around the World...
Help us and Vote NOW on Facebook for the Whittemore Peterson Insititute for Neuro Immune Disease on the Chase Community Giving Contest...

Human LIVES are at Stake here...

Please do NOT Let a floral society beat us !! 

I love flowers but we must be alive to enjoy them also....

Thank YOU ♥

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#114~ CFSAC Testimony- Mary M. Schweitzer, Ph.D.

This will be the first of a few "Special Guest posts" I will make, with the permission of the authors, of their CFSAC Testimony for this May 2011 meeting. I am doing this in the hopes that many of you that are not even able to view the meeting on the web and don't belong to Facebook or a forum will be able to read these and know what we are telling the CFSAC. I am attempting to include a cross-section of the different testimonies so you will get to see the big picture of this illness and the dialogue that will be taking place May 10+11th, 2011, in Bethesda, Maryland, USA.





Testimony
Mary M. Schweitzer, Ph.D.

First, I want to thank Wanda Jones and this committee for giving us a chance to speak, and in particular, for livestreaming this meeting so that patients who cannot travel (which would be most of the ones I know) and patients who are housebound (which would encompass too many of those I know) can view the meeting from their homes, both in the United States and abroad.

I also want to thank Dennis Mangan, the NIH committee that I was privileged to be a part of, and all the participants, for the outstanding State of the Knowledge workshop on such short notice.

I want to focus on the Centers for Disease Control and Prevention (CDC) today. CDC has been studying this disease for over a quarter of a century, and haven’t gotten very far. It is time that they caught up with 2011.
First I want to make clear that when I refer to CFS, I mean the Fukuda definition (1994), and when I refer to ME/CFS, I mean the Canadian definition (2003). When I refer to M.E., I use the Ramsay and World Health Organization definitions.

1. CDC’s Portrayal of the Disease
Suppose you broke your leg really badly. You knew it, your family knew it, your friends who were with you knew it. Somebody called emergency, and the ER techs came out. They had already been told by your family that you had a broken leg, but they said they had to find out for themselves. They came up to you and said, “Why do you think you have a broken leg?” Startled by the question, you said, “because it is obviously broken!” (Selfreported, one says to the other.) How about you stand up and we can see what’s going on with that leg. “NO!” you responded! “That’s going to hurt!” (Catastrophizer, they murmur among themselves. People who catastrophize about pain are more likely to feel pain.) Then they write a prescription for Prozac, say “Take this until you feel more comfortable about the prospect of standing up,” and they leave.

Now, of course that was a silly story. But it is exactly how I was treated by the first specialist I saw for this disease. “Self-reported” is an insurance term that is used by British psychiatric “experts” on CFS; and there is a published paper out there about CFS and fibromyalgia that uses the correlation between these diseases and fear of pain to conclude that people who fear pain are “catastrophizers,” and “catastrophizing” causes pain. There is a large body of psychiatric research on this disease that is just plain silly.

So don’t be surprised if patients are a bit worried about what researchers say about them, or what the government does about them. If you had a badly broken leg and nobody in the medical profession would believe you, you’d be a little cranky too. Indeed, when scientists injected lab monkeys with HHV-6, Variant A, the poor things hid in the corners of their cages looking supremely miserable, and one would drag his left arm and leg when they made him walk. Poor baby. Been there. At any rate, the scientists working with the monkeys said that they got a little cranky toward the end. No kidding.

Ever since CFS was abandoned by NIH, CDC has been the central agent of promoting views that are diametrically opposed to our experiences. For 25 years they have insisted this disease as caused by some sort of “stress,” – at first the stress of yuppie women “trying to have it all.” Today they claim the stress is caused by having been abused as children – but they’re still saying the same story. It’s just caused by an inability to handle stress.

Something else I have faced when coming here or when at a conference on my disease, is the phrase “Oh, I don’t believe that.” I recently wanted to talk with a well-respected virologist about HHV-6, Variant A, which I is a vicious disease, and which I have in both my blood serum and spinal fluid unless I am on Ampligen. The researcher stopped me as soon as the words came out of my mouth, “I have HHV-6, Variant A.” “Oh, no you don’t,” he said, cheerfully. “There’s probably just some artifact in your blood that makes it look as if you have HHV-6, Variant A.” That’s pretty much the same thing Stephen Straus said to me when I testified here twelve years ago about HHV-6, Variant A. And my response is the same now as it was then: I was part of a study of a handful of CFS patients conducted by Dharam Ablashi, the co-discoverer of HHV-6 and its two variants, while looking at samples from AIDS patients at NCI. Ablashi saw the virus in my lymphocytes. It was no artifact. But …”Oh, I just don’t believe that” is something I often hear. Hardly a scientific response, don’t you think?

In the meantime, we remain sick. So let me offer my first suggestion: if the approach hasn’t helped anybody with the disease in a quarter of a century, time to change the approach.

2. When is CDC going to begin to identify subgroups using biomarkers?
The Fukuda article from 1994 that gave us the most commonly used research definition also strongly urged CDC to begin identifying subgroups using objective biomarkers. That was 17 years ago. But if you look on CDC’s website, when they discuss biomarkers or microbes associated with The Disease, they always put them in the context of “The Cause” of CFS. No, that’s not the point, guys. A biomarker does not have to be “The Cause” to be useful. It just has to correlate. And when we are trying to identify subgroups, it doesn’t have to correlate with everybody who has ever had a diagnosis of CFS.

I belong to an identifiable subgroup. When in relapse off Ampligen, I have, among other things, immune biomarkers and activated opportunistic viruses. There is a
subgroup of patients who have precisely what I have, though I have more viruses than many, and some have viruses I don’t.

My immune biomarkers would be the 37kDA Rnase-L defect, which always shows up when I am off Ampligen and disappears when I go back on it, and natural killer cell dysfunction. During my most recent relapse, from September 2008 to the summer of 2010 (after having been on Ampligen for several months), I had a natural killer cell function of 2%. I also have an abnormal cytokine profile.
During relapse, I had active viruses in both my blood serum and my spinal fluid. I hold a flush in herpes viruses – Human herpesviruses 4-7. My relapses usually start with Epstein-Barr, which comes and goes while I am really sick. I test positive for active HHV6, Variant A, cytomegalovirus, and HHV-7. I also have Coxsackie B. I have friends who have parvo or an adenovirus, and I have friends who do not have HHV-6 or cytomegalovirus. As for the immune biomarkers, there’s a pretty strong correlation between those who were in cluster outbreaks and natural killer cell dysfunction.

I think we’re a subgroup, and I’d be very grateful if that could be recognized. The researchers who work with HHV-6 have been asking for years that Variant A and Variant B be recognized as different viruses, with one renamed HHV-9. CDC has turned a deaf ear to their research and requests. Intriguingly, Variant A is found in AIDS, CFS, and in the lesions of MS patients. Variant B, which causes roseola in children, is the virus that reactivates when patients are put on immunosuppressant drugs. While Variant B is endemic (it is the childhood disease roseola), in 90 percent of the adult population, Variant A is found in only 7 percent of the population. These are different diseases, but we need CDC to recognize that.
Finally, outside scientists at the NIH State of the Knowledge workshop strongly urged researchers to adopt the VO2 MAX score as an objective marker of the disease. Mine were significantly abnormal during the relapse – 14.5 – and even now, at 16, not a whole lot better. I have a lot of recuperating to do.

3. NCHS, within CDC, is overseeing the development of ICD-10-CM. We need to keep CFS in the same code as in ICD-10 – under neurology, at G93.3. That’s where it is in WHO’s index to ICD-10 – adopted by over one hundred nations. It’s also under G93.3 in the tabular versions of the clinical modifications produced by Canada, Germany, and Australia. It should not be placed in R53.82, under “vague signs and symptoms.” We would be the only nation to have CFS in R53.82. Why?

4. CDC needs to stop using British psychiatrists as consultants and guides to the definition and treatment of CFS. I am speaking specifically of Simon Wessely, Michael Sharpe, Peter White, and nurse Trudie Chalder. The latter is a specialist in “factitious illness” and “factitious illness by proxy.” Is THAT what CDC thinks of us and our disease?

It should be noted from the outset that the British psychiatrists do not use the Fukuda (1994) definition. They use the Oxford definition to diagnose CFS. The Oxford definition requires six months of debilitating fatigue and NO physical conditions that could explain that fatigue. Conversely, psychiatric conditions are NOT excluded from Oxford. I had an email exchange with Simon Wessely in 1996 when he told me that I did not have CFS because I have NMH and Hashimoto’s thyroiditis. They also consider a failed Romberg test as exclusionary because it is a sign of neurologic abnormalities – in contrast to my original specialist, Dr. Marsha Wallace, who used my inability to pass a Romberg test as diagnostic for The Disease (as is also true for the Canadian Consensus Definition of ME/CFS.)
The British psychiatric view of CFS is that it is an “inappropriate illness belief.” That is why they prescribe Cognitive Behavior Therapy – not to help patients adjust to the disease, but – in their own words – to “reverse” the disease, to cure the disease. Graded exercise is recommended to get these poor women who have been deconditioned by their inappropriate illness beliefs back into shape and able to return to work and household.

Is THIS what CDC thinks of our disease? If not, why does CDC’s website suggest cognitive behavior therapy and graded exercise, perhaps with an SSRI added and something to help patients sleep, as the appropriate treatments for this disease? Why is there a direct link to the website for Peter White’s psychiatric practice at St. Bart’s hospital in England?

#111~ Dear CFSAC~ One last time- Getter' DONE !

Dear Dr.'s Wanda Jones , Chair Chris Snell and all CFSACommittee members and attendees,

I HAD wanted to be Polite and respectful in this letter but the NIH meeting has brought out my "Outside Voice" 

cuz the WE patients are ticked off and as the Movie "Network" says~ "We are Mad as Hell and are NOT going to Take it ANY MORE" Got it ? Is that Clear ?

 

Do you need it in a few more languages ? Is everyone putting down the blackberries long enough to even read this??

Remember you ARE on Camera and all nose-picking Will be ( and has been)  observed.... Wake UP you ARE on Camera and this should NOT be another version of the World's Funniest Videos of 2011." 

I had been wanting to be in a Happy Mood when I wrote this letter but after the actions of Dr.'s Coffin and Vernon at the NIH State of Knowledge Workshop, I must say I am extremely Upset and in disbelief that #1~ Dr Vernon does NOT represent us in ANY WAY and the patients do NOT want her to utter "ONE WORD" to us or ABOUT US. Period. We have even created a Petition to that effect that has already gathered many signatures.. 

 

Who died and made her the MC at the end of the meeting ?  And she demonstrated her lack of courtesy when she was interrupting "what the viewing audience was seeing as a VERY Important discussion between 2 researchers"... How DARE Her ?

We have waited almost 30 years to HEAR these discussions.... Shame on Dr Vernon........... "Black Mark Given." by MANY !!!

Dr. Monroe of the CDC's  "poor Joke" at the NIH about not wanting to miss his plane was NOT Lost on the patients...

Especially, since it was the CDC that shot down Elaine DeFeitas in 1990 when another Retrovirus was in the early stages of being linked with ME/CFS.

 

Elaine made her BLT with Best Foods Mayo and the CDC decided to use Miracle Whip> Guess what> Garbage IN Garbage OUT> Then, they claim that "they can't replicate her findings".so... . She invites them UP to her lab to watch every step she takes.. and their excuse is that "they can't afford the 2 plane tickets to get up there." PALEESE... How Lame> When they ARE the ones that have the Name" Centers for Disease CONTOL and Prevention. Did they FORGET THAT ???

Hey, CDC, Dr Monroe, How MUCH IS YOUR LIFE WORTH? A plane ticket ???

Give me a fricken break.. and for THAT we go another 20 years without Help or Treatment ?

Right now the CDC is an acronym for us that stands for "Can't Detect CR*#" = until they start acting with INTEGRITY toward their citizens... They TRULY ARE a Worldwide Embarrassment to the USA.

And I am equally dismayed and repulsed and almost made physically SICK, by Dr. Coffin's wish to discontinue all XMRV Research... How DARE He...??
A REAL Research Scientist would WANT to Keep Looking > when they already have Thousands of patients that ARE Testing Positive, either by PCR or Serology or Culture and DO have antibodies and>  Hello many were sick before Dr Collins 1992 date, whatever that was about... We have been sick since the mid 1980's~ Was he NOT even listening ??? There are NOW 7 cohorts, in 7 countries that have tested XMRV+ from different labs... So his arguments are MUTE points... Maybe he needs to buy a Hearing AID> poor baby should we chip in to buy him one ??

 

I think NOT, he has wasted enough of our money and can't replicate anything because HIS fricken lab is the one that is contaminated..

I respected him in the beginning, but he has now lost all of our respect... Until IF and When he chooses to EARN it back...

by Continue Researching what we already Have> a retrovirus called XMRV, and starts doing the proper tests and using the proper proteins.

I don't think he had his hearing Aid ON "At ALL" during the NIH SoK unless someone other than Dr Judy was talking...

Not too much Prejudiced there, especially to have the cajones to call for Research to STOP when we are sick with it... Disgusting !!!

Maybe it is True ? That "That Takes Ovaries" and that is WHY Only Elaine DeFrietas and Annette Whittemore and now Dr Judy Mikovits been the ONLY ones to NOT worry about their cajones and have learned to Speak UP FOR THE Patients...

Which is what you, the CFSAC,  SHOULD BE DOING NOW.......................................

We are getting the feeling that either:

#1) "Some of these Researchers" do NOT Care about the Truth...........Thank you Dr Coffin> aptly named I might say.....

            Those that DO Care, we could Easily tell who they are and "We Thank Them Whole-Heartedly" ♥

#2) That our Government and this committee does not really care about us or the millions around the world being effected.

#3) that this government is being penny-wise and pound Foolish, because we DO want our Lived Back like Robert Miller Said and we would LOVE to be paying Taxes and helping the deficit.. but many of us because the lack of knowledge after YOUR and YES I mean ALL of YOU> is literally embarrassing and you have NOT Cared one iota about REALLY Helping us~ or you would have Meant what you have said and Done something about it !!! All we get here, until NOW,  literally IS Empty Words..

Where ARE your Consciouses ? You very well KNOW How sick we are and you Demand NOTHING >>>>>>>>>>>>>>

You KNOW as Dr.'s Leonard Jason and Chris Snell pointed out Extremely Well at the NIH> that we DO HAVE 

"Post Exertion Malaise".. that is a HUGE Part of what sets us apart from those that only have depression..
The Canadian Case Criteria KNOW it , We ALL Know it, Many Drs KNOW it, now its time for the CDC to KNOW it and OWN it, Period.

 

Was Anyone Listening ???? Did you listen about the OI/POTS parts that effects our Oxygen intake and our ability to stand UP ?? and YES>effects our hearts ??

I hereby not only request, but a an insulted 17 year hospital worker that had to quit my job because of this illness 

and now cant even get Disability because it took TOO Fricken Long to get a Diagnosis, which was NOT MY Fault cuz no Doctors have been educated about us,

but I DEMAND that this committee Send a message to the CDC in their STRONGEST Language to Cease and Desist with the infantile psychobabble that they have 

on their website about this illness and start acting and behaving like REAL Scientists and Take DOWN THAT "GET" junk that Physically HARMS our hearts and 

many of us have already had therapy because of the abuse of our Dr's and the CDC "not believing us" for 20+ YEARS... SO THEY HAVE ALSO INFLICTED

PTSD on many of us, Yet we Fight ON, because we KNOW the Truth and the world is also learning the Truth... that the CDC and NHS are Puppets

of the Psych Dept and the Insurance companies... We have had enough of this.. and you WONDER WHY our the Health Coverage in the country sucks ?

Emory University wrote a paper A YEAR AGO about those of us infected with XMRV+ and co-infections and What Meds would help us...

Where the Bleep are these Drug Trials ??? Magic Johnson is FINE on his meds and God KNOWS you are NOT letting us have any meds to get better so we can Have our Lives back and be Functional citizens again and get jobs and Pay taxes... What are you hiding ???Who are you covering-UP ??

WHY DO YOU WANT US to be SICK ? OH, so you can carry on this charade of doing non-relevant research for another 25+ years... WRONG !!!!

Like Dr Ruscetti said a month ago... If this were HIV this would be 1983.......

Wake UP>  The Band IS Playing ON......... and you are NOT getting us any help NOR cleaning the blood supply...

You should all be ashamed of yourselves that you have let this Crime against Humanity GO ON THIS LONG>...

It is now World-wide and not only within the confines of the USA.

I was was Proud working in a hospital for 17 years that REALLY Cared about their Patients like Dr Bateman does..

and like WPI and Dr Judy Mikovits do.... but I have seen NO medical ethics displayed here recently..

I have felt NO Urgency to Help those with a RETROVIRUS and co-infections Get Treatment... NOW

Shame on ALL of you>>>>>>>>>>>>>>>>>>>>

 

You are literally watching as Rome burns or better yet as this Holocaust plays out and kills another Generation...

We ARE on our 3rd Generation now and the Family Trees are showing up things like Lymphoma

and Autism..Breast Cancer and oh yeah >  Thanks My mom died from Lymphoma and I have XMRV...

 and you play your fiddles..... and yet YOU collect your pay checks..

GIVE YOUR PAYCHECKS BACK TO PAY OFF THE DEFICIT OR "DO SOMETHING TO HELP US" > NOW

YOU HAVE 2 DAYS TO GET IT RIGHT, THIS TIME... PLEASE....

EARN YOUR PAYCHECKS... Speak UP and actually DO something to get the Huge Ball Rolling to get the CDC off their Butts

and the FDA off their Butts and get us some Clinical Trials... We have "ToDo Lists" we are NOT simply depressed

like the CDC website seems to think.... That website is an atrocity...and an embarrassment to the citizens of the USA.

If they have NO Respect for us, WHY on God's Green earth should we Respect them ??

If they don't believe XMRV is Real ? are they willing to receive a transfusion of blood tainted with it ???

This ostrich game everyone is playing is getting really OLD>...Older than I am... and the World IS seeing Right thru it..

The DHHS>NIH can't Afford any Centers of Excellence> Hello> The WPI already Exists... Help them dang it !!!!

I also hereby "Officially request that the NIH Create an Additional SEP for the study of XMRV~ NOW" >
Cuz otherwise there is NO Place that Grants can be written and sent to study this,... unless they come in 

a back door thru some other of the MANY co-infections and that is BS> to the Hilt...

PLEASE Tell me> HOW MANY PEOPLE BEING SICK CONSTITUTE AND EPIDEMIC OR PANDEMIC ??
NOW answer truthfully here ??? Please....

There are at least 17 million worldwide in this new 21st, Airplane bug hitch-hicking era Century and that's

ONLY including the 20% that they say HAVE been diagnosed...

How about the Millions with Lyme that are testing XMRV+ ?

How about the 25% of Breast Cancer samples that are also testing XMRV+ ?

How about those with OI/POTS and XMRV ?

How about those with NO adrenal function or Thyroid function and XMRV ?

How about those on our Family Trees that now have Autism ?

How about all of the families brought to Bankruptsy trying to care for their "sick member" ??

How about the thousands that not ONLY do not HAVE any medical coverage OR Disability, 

but have NO ONE to care for them and are Bedridden ?

Is the USA ~ Really a 3rd World country again ?? 

That seems to be the way you treat your citizens...

Dr Jones, How much is your Life worth to you ?

Dr Snell, How would you feel if you were bedridden for YEARS but your brain STILL worked fine ?

Where are the "Job Fairs" for the bedridden ????

We can't get Disability cuz the Dr's didn't know what we had..

We can't get jobs that aren't scams from home in bed..

WHAT do you expect us to LIve on and How do you expect us to Exist ?

And we were Hospital workers, professionals, professors, etc, Please Help us..

Where is your consciouses ???

We Demand a NIH SEP for the Research of XMRV and all cohorts connected with it NOW< Period.

 

If you do NOT make this a recommendation to Sec. Sebilius than we WILL KNOW where the CFSAC stands

and how much they Care NOT about the thousands of us that are NOT getting ANY Treatment or medical care

and are being simply left here to die.... so put THAT on your conscious... OK ?

HOW MANY YEARS MUST WE BEG FOR THE SAME THING ??

Do your salaries NOT Pay you enough to Buy Hearing aids ???

At this point , I really do NOT give a Rats A*# where or How we got it, but we HAVE IT and are testing Positive for it and HAVE Antibodies> Hello !!!

YES OLD ANTIBODIES> so not obtained after 1992....capiche ??

Sick Before Coffin's 1992 date = a Mute Point..  What's your Next excuse ?? For NOT Helping us ??

Continue your other Research, but for Gosh Sakes,  "KEEP Researching the thing we ARE and Have antibodies for"  = DUH 

The poor Medical MDs that that you put on the front lines to treat us are the ones that catch ALL of the FLack ALL Year Long...

SHAME ON YOU> EDUCATE THEM... WITH OUR BIO-MARKERS SO THEY CAN KNOW WHAT TO TEST FOR...

 

My CD4CD8 is off and backwards, I have had HSV since I was 5, had EBV/Mono when I was 19, but to went away

and I was able to get married and work in the hospital for 17 years until I had my Triggering Event...

I had  HIGH Fever "Sudden ONset" with a low grade fever that last for over 2 years....

I was on the couch living alone during that period. I could not even go to the hospital to say Good-bye to

My closest thing to a sister that was dying from AIDS as NO ONE could tell me what I had...

My EBV at the tome was very LOW> so NO it was NOT EBV> Get it ??

It had taken me 23 years to even obtain an written letter from my Dr that says I have > OH yes..  CFIDS and it is Spelled out... as well as OI< but she forgot the POTS part... and YES I have my own BP cuff and I use to work in a BP clinic, so I know how to take it. My thyroid gland is shot and so are my adrenals now.. so I must take expensive meds to supplement what my body can not make.... Where is ANY Mention of the deterioration of the body that THIS ILLNESS COSTS us so we can KNOW "what NOT to do" or "What to do to Help ourselves" = NO Where !!!

 

If you had DONE or Listened to Elaine DeFreitas maybe many of us would NOT even BE this sick now...

So you NOW have a Second  Chance to get it Right... Your Center of Excellence is WPI>

Get that through your Brain Please.. They are the ONLY one to already be using Translational Medicine

which Dr Vernon to her detraction, tried to adopt and claim and a New idea, when WPI was already set UP that way 5 years ago !!! Vernon, maybe YOU need some Hearing Aids also, cuz we will NOT put up with your Revisionist History either.. capiche ???

Vernon talk about Everything that XMRV has done to bring ME/CFS into the Light of the Press and Scientists was done by the WPI not simply XMRV... sheez.... XMRV did not research anything. XMRV did NOT bring together the NCI and Cleveland Clinic, and it was the WPI that with them got the Science paper Published.. Vernon you can NOT claim what is not yours and you jealousy of them is showing as Green and your lack of knowledge and Expertise...

Last time I wrote you, I thought it might be my last, but NO Thanks to YOU I have found HOPE in WPI and learned a few things to help and my money has not quiet run out YET
so I am not on the streets YET, but I do NOT have enough to last until I am 66, so I will either die, or get meds, or lose the house I PAID for like a good citizens, and will probably have to go live in my trailer God knows where cuz I can't even drive to pull it anymore.. I use to travel to do my Nature photography in it.. to take me away from the stress of the  hospital politics during the early days of HIV and AIDS....

but here we are again.... "And The Band PLays ON... 

PLEASE REMEMBER THE

WORLD IS WATCHING YOU AND ALL OF THESE MEETINGS AND THEY KNOW  WHETHER YOU CARE OR ARE ACTING SPINELESS.

 

For God's Sake DO something to Help us... Help those NOW that are XMRV+ Plus co-infections and Please get the Psychobabble OUT of the CDC's website and let's start acting like Adults here and Clean the Fricken Public Blood Supply NOW> NOT Years from now.. 

You are continuing to commit Crimes Against Humanity by your "Lack of Action." Period.

Own your Cajones or Ovaries and STand UP for what is Right... This Time NOW

Even Dr's Bell's Lyndonville kids tested 70% Positive for XMRV~

You want our blood FINE we'll donate it to you Personally~

You ARE Taking our lives... so what else do you want ?

We will NOT shut up for you or anyone at this point...

We have had enough > Got it... 

We will speak up until our dying Day or until you get us some Meds to Help us  as you are suppose to do !!!

It's Your choice... Give us Meds and DO More Research including a SEP for XMRV or we WILL start being heard in more ways than Egypt planned for...

Many around the world are not taking what is handed out bay their dictators any more and you have been not representing us effectively for the last 20 years.. nor the CDC/NIH for the last 30 years.......while "The Band IS PLaying ON>.

So HERE"s your chance NOW> Do it and show us what you are made of....

Cuz your actions will show more than your mere lip service

that we have been getting for decades.. while children die and the 3rd Generation gets infected...

WAKE UP and PLease SPEAK UP> NOW

The world is watching you and what you say and DO.............

Sadly, I remain,  w/o hope unless you create a XMRV SEP and get us Help........

I might remain a while longer but I will NOT go down quietly and will broadcast to everyone, everything this government, AND every other Gov't  has NOT done to take care of this NOW worldwide PANDEMIC. Wake UP !!

I had the Test, Now I need the meds..........

"Kill/Incapacitate the BIG BUG, then deal with the co-infections"

or does THAT make TOO Much sense ?

ShareThis

#106~ Beyond "Coffee-Talk" Time

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

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

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




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

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

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

I have always Voted for the issues and the person, NOT by any party... What is going on NOW is making me even more  Happy that I have had this mindset, because NO one Party or even Patient Org. has ALL of the Answers.. We must BE "Informed Citizens AND Informed Patients" if we expect to STAND UP for OUR Rights on ALL Levels and Hold ALL of them Accountable. So that is why I feel I have the Right to mention any party or org in my blog because I will take the Best ideas of all and I will reject the bad Ideas from all... That is part of critical thinking.. Do not accept anything ANY Group says as Gospel and ingest it like pablum. Question EACH item and research it or as one of my grade school teachers once told me, " You do NOT need to know all of the answers and are not stupid because you do not know all of them, BUT, be sure to at least KNOW where to go to get them." THAT is the Strength AND Beauty of all of us Patients and Patient Advocates because we CAN help educate and Inform each other so that we CAN Speak with an Informed VOICE and Speak in LARGE Numbers..  WHO says AARP is the ONLY Loud Voice  to be Heard in Wash. DC. We CAN be the same way if we mobilize our laptops and computers and our networks amongst us....  
 
I also have been questioning why there is not a SEP or place where XMRV grants can be submitted to for approval. ME/CFS or whatever name you want to use aside, isn't XMRV already  linked with prostate cancer and lymphomas also, with suggestions of a 25% link to Breast Cancer and a much larger link to Lyme ? Why is there not a place to study this new retrovirus ? Since there are so many of us are testing positive for it, maybe this should be one of the issues we jump on to and campaign about. just a thought..

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

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

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

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

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

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

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

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

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

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

Dr. Jamie has already explained HOW all of this most likely happened...
The cat is clawing its way OUT of the Bag...
It's TIME for the NIH to "Get REAL" about this Retrovirus and Take it SERIOUSLY~
The CDC + UK MRC have a LOT to be worried about NOW...
http://treatingxmrv.blogspot.com/2011/03/cover-up-and-contamination-theories.html

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

The NIH State of Knowledge Conference meeting in April will show the colors of the NIH and then we will know where to expend our energies at that point. Here is the supposed agenda.
State of Knowledge Agenda
How it pans out will let us know where we stand. 
Please do NOT Wait to start your Letters for the CFSAC..
Please start gathering your thoughts NOW, because by the time the SoK is finished we will either be Very Happy OR Very Angry... Either way we ill have, I promise you, expended a lot of adrenaline and energy and many will crash. The due dates for our CFSAC Letters will be published about the same time and if we are crashed we will NOT be able to think clearly.. so Start NOW, so you can already have MOST of your thoughts ON paper/computer and then they will just need last minute tweaking before you sent them in "in time." OK ?

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

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

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

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

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

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

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

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

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

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

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

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

"NIAID is soliciting input from the infectious diseases research community to help identify potential high priority research areas to be addressed by the NIAID Leadership Group for a Clinical Research Network on Infectious Diseases other than HIV....it should address high priority research areas that are opportunities not presently addressed by NIAID’s infectious diseases clinical research portfolio and that would be accelerated by a multi-site clinical trials network. Currently, NIAID supports a wide variety of infectious diseases clinical research activities in areas other than HIV." These activities are described on the NIAID website at the following link:
http://www.niaid.nih.gov/about/organization/dmid/clinical/   ;                
a more detailed listing is available by request from DMID
(send email request to: NIAIDClinicalRFI@niaid.nih.gov )
Let's make the PROVE that they "support research in areas other than HIV and make them GET BUSY."

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

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

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

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

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

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

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

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

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

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

The video may disappear in the next day or two so Please watch NOW> OK?

AND get everyone you know that has NOT YET seen it to watch, Family AND Friends, OK ?                                                                           
http://online.wsj.com/video/rural-ny-town-becomes-chronic-fatigue-laboratory/D80B17A7-B6C5-4B33-8356-F92C8751A93F.html

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


 

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

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

article link in full below (7)

 *******************

We are also gearing up for all of our Annual May 12th International Awareness Day Campaigns that will include MANY different activities on all levels, something for everyone from Tweeters, letter writers, on location demonstrators in the USA and UK capitols and others around the World. Please gather ALL of the ideas you can make note of from the Forums and Facebook and email them to me so I can post about them and you can then know about everything that everyone else is hearing about, OK ?  We want this one to be a BIG YEAR and we want them to HEAR Our OUTSIDE VOICES... 

Send your emails to <mecfs may awareness month at gmail.com> OK ?           

I will gather them and keep you informed of everything I receive, OK ? 

We EACH will have our own little part to do "to pull off" this HUGE May 12th Awareness World wide EVENT, so let's Agree to AGREE to Help INFORM each other, OK ?  I will NOT "Judge" the Pros or Cons of any planned Action.. I will simply report them to you and you can choose which one/ones you want to participate in, OK ?

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

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

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

♥Hugs♥ and love + kindness to you all...
whether you are still buried in snow, helping your neighbors after a flood, fire, earthquake or volcano, we send you love and Positive thoughts everywhere ♥



PS: Thought for the week~

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

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

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

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

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

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

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

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


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