#118~ Why VIVINT "IS" Important NOW !

Before I go into what needs to be done and how, I would like to give a little background to those that may have either forgotten OR are new to this Battle and history OR are stuck in one mindset and need a new perspective.


Dr. Jamie Deckoff-Jones is resuming her OWN Practice and has moved back to Hawaii and her opinions are ONLY that, and she even states that.. Many KEEP ignoring the rest of the patients all over the world that do not live in the USA ?

Please ask WHY many pretend like this is still ONLY about Incline Village and "the non-defining and everchanging naming" done the CDC ?

This is NOW a WORLD ISSUE .. Why would we still be only looking for "regular pneumonia" if many others had "pneumocystis pneumonia" and then they discovered that they also had a retrovirus ? Not everyone is still stuck in Incline Village and diseases/viruses of whatever kind mutate with time, esp. 30 yrs, and YES just like illegal immigrants can cross country borders and even hi-jack a ride on a plane or in a mosquito or tick. If a mosquito can tramit Malaria and West Nile Virus, why should it not be able to pass on a retrovirus after it bites someone that is XMRV+ ? Many methods are being tested and there is a lot more to learn about this very fruitful path that is ALEADY Helping Many.

There is also a thing called new tests and new research resulting in new results and findings.. It's like testing out a new dish to eat and then going home and 30 yrs later trying to re-create it w/o the recipe. IF Elaine DeFreitas had continued her work, whose to say where we would be now ?

Also, we now have this new Retrovirus in 9 countries, testing positive in different labs... with patients with many of these co-infections. IMHO, that is a "game-changer to anyone's immune system" AND  how it will respond to any other incoming disease.

DESPITE ALL OF THE NEGATIVE BS RESEARCH PAPERS THAT EITHER ARE ALL NEGATIVE OR THE ONES THAT COME OUT 0/0......  

Science and Research IS moving beyond CFS and working on The Bigger Inter-Connected Picture. That can also be called Progress and may be Finally getting closer to the REAL Truth~ No matter Where the origin of a particular version/branch of the disease came from.

Many ONLY want ME or Original description of CFS cured, BUT the Original description of CFS despite newer info and research joining many NIDs together showing a connection and now even MORE involvement to a retrovirus FAMILY ! But THAT is not the issue right now.. THAT's the part we have moved on from, because MORE Evidence is showing how much more this interconnected web of diseases is effecting our many organ sysyems and many of these illnesses are really triggered by a Master Puppet that then allows the Domino effect and we catch more other things like the things the CDC considers "experimental or not relevant for CFS testing"... BUT they ARE when you are looking at the Bigger PIcture with a Retrovirus in that picture.. 

Sometimes Research locates the tail of the elephant before it locates the trunk. What matters is that they finally locate the elephant in the room.

SOOOOOOOO, with THAT said.. it is of UTMOST Urgency that anyone that REALLY Cares fo Help us FIND Trreatment and Cures ASAP after the last 3 decades we have already waited... 

 

 

 

 

 

Please keep voting. We are up against "Invisible children,"and  the "It Gets Better Project", the "Trevor Project". These are all very large charities with huge fan bases. Invisible children won Chase Community Giving 2 years ago. We are in the pacific region with stellar competition. They haven't begun to get out the vote yet. OK ?

 Help WPI by not ONLY VOTING Daily in the VIVINT FB Contest, but  then ALSO Helping to donate up to $50/£30 per TOTAL during the Contest ...

"Matching Periods" and VIVINT will Match monies up to $2,500 total.
First period starts July 21st NOW !! = 5 hours ago !
thru tomorrow July 22nd at midhnight.


You Vote DAILY BY~
Going here Daily until thr END of August~ PROMISE Now.. OK ?
(1)http://www.facebook.com/VivintHome (click LIKE)

(3)http://www.vivint.com/givesbackproject/charity/769 (2) click "Login to Facebook", then click (VOTE)

Really~ Help NOW !! today and tomorrow !!

Please consider donating to the Whittemore Peterson Institute between midnight on July 21 ( 5 hours ago) and 11:59pm on July 22. If you do this, Vivint will match your donation up to $50/£30. You can donate here :http://www.vivint.com/givesbac​kproject/charity/769

Please Help advance Research into ALL of these NID illnesses and Help people from ALL over the world benefit from the New Research that is being done and the New Clinic that will be OPENING August First ♥

Remember that the WPI needs your daily vote!    Please post your vote for family and your friends to see.
We NEED them and ALL of them to Vote also !
Please ask them, pretty please ♥

If they have co-workers that will also Help US because it's the PROPER THNG to do the Help ERADICATE THIS DISEASES, because ONLY this Private money right now has the ability because of the World's money Deficit issues to help with  this MOST Important Research.

You KNOW the "Talking Points" and how to deliver them in a polite way that will make them realise that this is to also be Helping them so they con't get these diseases.. 

Remind them of the MANY Diseases that are being Linked and ALREADY Helped.
Thank you!!!!

 *********************************************
Beyond that~ PLease "Mark Your Calendars" for  Sept 15th for the 7th Annual
"I Hope You Dance" Gala FundRaiser Benefit for the WPI.

Now **GO TEAM GO**

Thank YOU ALL and Bless you ALL ♥

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#117~ "The FINAL Betrayal"

Posted with the permission of the author Danny Ze-dog.

I'm too sick at the moment to start my own blog, and even if I had one I wouldn't be able to say what I'd really like to the way I'd like to.  But in light of months of following the scientific (and anti-scientific) developments in the XMRV story, and given that it is XMRV Blog Week, I feel the need to say something.  So here it is.

I don't know for certain whether XMRV and any related MRVs cause ME/CFS, or are co-causes or co-factors, but neither does any other scientist.  I don't know what role it plays in ME/CFS, but neither does any other scientist.

I know this: I will not spend the rest of my life sick or die young because some researchers and research journals made a political decision to "close the door" on the MRV-CFS association before it was appropriately investigated.  

I want a true replication study NOW.

I want 'science' journals to stop publishing negative studies by authors who haven't used clinically validated assays to detect XMRV.  I want 'scientists' to stop claiming that non-replication studies ARE replication studies.  I want any researcher, journal editor, or 'science blogger'  who claims that true replication isn't necessary in science to be forced to seek alternative forms of employment.  I want an investigation by the Department of Health and Human Services into why the NIH's tiny CFS grant review panel has turned down a series of grant applications by the WPI.

I want at least one sliver of justice for millions of sick people who have had none.  If nothing else, we should have the benefit of supposedly dispassionate, objective science.  We were raised to believe that science is the backbone of modern civilization, and the last pure thing left in a world rife with politics.  If we cannot even get THAT without political interference, then even the highest court of appeal is corrupt.  

For well over two decades we have trusted that, at some point, the system that was ostensibly built for us will finally work in our favor.  At what point do we decide as a community that it clearly will not?  And at what point will we protest en masse that our rights as citizens and as human beings are being denied by medical, "healthcare", political, and scientific establishments?

The most blatant recent example, and the most immediately crucial issue, is the organized attempt to bury XMRV-CFS research.  With whatever energy we have, we need to fight to stop that from happening.  NOW.  We need to let those who would bury it, or let it be buried, know that we will not tolerate this.  We need to let 'advocacy' organizations know that they should either support us in this endeavor or stop posing as advocates and get the hell out of the way.  We need to strategize ways that we as patients and their carers can have a real impact on the scientific institutions and policy-makers that are normally walled off from us, and on the media that increasingly serves only as a mouthpiece for the 'official sources' with the best media connections.  If the high-profile discovery of a potentially pathogenic gammaretrovirus that may infect at least 4% of the population can be whitewashed from the memory of science and history, so can - and will - that of any other pathogen, be it HHV-6, Lyme, or anything else. 

This isn't just an issue for people who support the XMRV hypothesis - it is an issue for everyone who wants good science to be done on this disease, now or ever.    
*************************************

"Well said" Danny, and Thank YOU for letting me post your statement here.. There is MUCH Truth IN it ♥

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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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#115~ VOTE: Help WPI + us at Chase Giving

PROJECT: GET OUT THE VOTE FOR  WPI
May 18th  9pm (PST) thru May 26th 9pm (PST) USA

Dear Family and Friends and Yet-to-Be friends~

I have a Huge Favor to ask of all of the readers of this blog. Please know that this next week is very important to millions of people that need WPI to be able to continue helping us and doing their research. 

I sincerely beg each and every one of you to participate and "call in" any favor you can from all friends and family and ask them to ask their friends and family so we can get as many votes as possible to help the research continue. 

These are indeed dire times and the opportunity of this Grant has been placed before us, which ONLY takes a FREE VOTE aka ONE CLICK is Incredible and it is now our turn to step up to the plate and just do this one this one thing from around the world to help WPI and all of us with any Neuro Immune Disease.

I personally will be sending out this blog, emails, tweets and phone calls to my friends "that I Know Care" and even those I don't and ask them to participate and send out emails and post on their FB page about Voting for WPI and the directions in a brief paragraph, after we have created it once the contest officially opens.. Ask them to look for it and please help. 

If you belong to a church ask your friends to help, make an announcement, talk to your minister/priest or any clubs you might belong to, and even all of your local support groups. 

Get Creative and ideas WILL come to you of people and places to enlist for this one little thing we can do from around the world to help WPI the Facebook.

Thanks and bless every one of you that decides to help and participate. ♥

The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below beginning May 18th at 9 pm PST through May 26th at 9 pm PST.


STEP-BY-STEP Instructions:


1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.


2. Join Chase Community Giving by clicking on the "Like" button.


3. Do a Chase Giving "search" for Whittemore Peterson Institute for Neuro-Immune Disease. (only including this in case Chase chages the link for the 2nd Round..
I know how to spell "assume" and always like to Have a Plan B in case the link below doesn't work for some reason, OK ? )


4. Cast your vote for WPI by clicking the "Vote Now!" button.


5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.


CHASE COMMUNITY GIVING: BIG IDEA


The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and Autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide onsite care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund. 

WPI’s commitment to discovery has already inspired much hope worldwide. 

*** Now it is time to put hope into action by offering meaningful patient care to these under-served populations.***

Please place this message at then end of each email for the whole next week:


Please take a moment to vote and ask your friends and family to vote too!!! Chase Community Giving is giving us a chance to win a $500,000.00 grant for the Whittemore Peterson Institute.

Here are two links. 
Voting begins May 18th at 9 pm PST and ends May 25th at 9 pm PST, so mark your calendars.

Current FB- WPI - Chase Giving page
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo?m=410af99a


A shortened link to use for Tweeting that will also take you to the same WPI @ChaseGiving FB site as above, so Use this for Tweeting, OK

http://bit.ly/mrWckA

Please share this video with your friends that don't know anything about ANY Neuro Immune Diseases and Help them understand it's about MANY diseases and maybe this will help them Understand the URGENCY of this Chase Giving opportunity we have been given This WEEK.


Bless you ALL and Thanks for anything you can do to Help...

TOGETHER, we can Help WPI and WIN this one, I just feel it...

So **GO Team GO**  and ♥Hugs♥ to all.....




We have this ONE Week to Help Create this Miracle of Funding that will mean SO Much.... Let's DO it ♥

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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?

#113~ 2nd Chance: Pres. Obama Can you Hear Us ?

Pres. Obama, We want you on "Our Dream Team"
Please Help make Our Dream a Reality ♥


Hello everyone~


We NEED to Build Our PR "Dream Team"~ Let's start at the Top with this campaign, OK ?


The other day we the ME/CFS, Neuro-Immune Community of patients, family and care-givers have been given a "rare opportunity".. The wife of a ME/CFS patient actually "got the ear" of the President and a Promise from him that he would contact the NIH about ME/CFS when he got back to Wash. D.C.


So this request is for "ALL of you Everywhere" on ALL Continents, OK ?


OK, "NOW is our Perfect Time" for us to FLOOD President's "inbox" at The White House and make SURE that he either ACTUALLY gets to read one of our written letters, emails, faxes or phone calls, OR if Not then at least his  STAFF WILL Definitely KNOW  that We ARE out here.. and when he asks them to call the NIH, they will also tell him that he has been receiving TONS of correspondence from ALL of the Neuro-Immune Community regarding ME/CFS.


We have been give this chance and we must NOT waste it.. Especially when if we get our letters to him this next week, Send them ON April 29th, OK ?


That should give his Staff time to read all of them and get him something just in time before the 2 days of the CFSAC start on May 10+11th, and there will be a delegation of people (from the "early onset" ~ "Stand UP for ME" group with children meeting with Congressional members to "put some faces on this" on May 11th and Our International Awareness Day is May 12th.


Recent News and background~


Courtney Miller asked President Obama
"Q    Mr. President, my name is Courtney Miller .  And I want to thank you for returning science to the national priority.  And I need to ask for some help for my family.  My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis.  And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness.  And I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games, if there’s a way to make improvements on that."
......
Answer snippets:
“I am a Christian and a person of faith and I believe that God gave us brains to figure things out,” Obama said when asked by a woman in the audience what his health policies could do to assist her husband who is suffering from Chronic Fatigue Syndrome. (1)


"Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it.  But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment.  Okay? " (Applause.) (2)


Here is the video of that event:

Listen for his comment at about 11:45min. about medical research.
Courtney Miller is at around 47 minutes time,
asking Pres. Obama for funding for Chronic Fatigue Syndrome...




Why we are asking YOU ALL Now from ALL around the WORLD to Help us let him KNOW that this indeed IS a Worldwide PANDEMIC.. He needs to receive letters from all over the world, OK ? So USA, UK, Iceland, Belgium, Norway, Sweden, Canada, Australia, New Zeland, Spain, everywhere you know there is ME/CFS please watch and understand WHY we want to FLOOD the White House with Mail so we can STAY "ON his Radar" and maybe we can Help him Understand that BY Helping US, it will SAVE the country and world's economies money because once well again and on meds like Magic Johnson, a basketball player he will know of , we can then get some jobs back, get our lives back, and will be HONESTLY "Happy to Pay Taxes" and not be broke or on disability any more...

This is also WHY we want to DO this~

How Mail is Handled at the White House.



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Talking Points for your Letters:

*** This Category of Neuro-Immune disease includes ME/CFS, Autism, Chronic Lyme Disease, Gulf War Illness, mitochondrial disease, and has also been linked to Atypical MS, and numerous cancers including an Aggressive Prostate Cancer, Lymphoma, 25% of Breast Cancer and can include many serious conditions such as MCS Multiple Chemical Sensitivity, OI/POTS Orthostatic Intolerance/ Postural Orthostatic Tachycardic Syndrome, which drops your Blood Pressure in half when you stand up and makes your heart work 4 times harder to help circulation so it can pump nutrients and oxygen to your body and BRAIN, otherwise you will pass out in 5 min if standing STILL . They also usually become VERY sensitive to many meds which makes even treatments harder. It's a complete long term progressive disease that devastates families, while it bankrupts them and the insurance companies DO NOT pay for any tests that are required and thus they pay for NO Treatments... What's wrong with THIS picture ?

*** The CDC must be made to IMMEDIATELY change their website so that will include testing for the co-factor infections many of us have, like EBV, HHV6, etc. Eliminate the Treatments of GET + CBT, because it has been PROVEN that for many of us with OI/POTS "any GET" is yes Literally Harmful to us..and the ONLY CBT that we need is what Dr Lucinda Bateman of Utah uses which is to "teach us the limitations of what we can and should NOT do living within the confines of our illness so we do NOT do anything to cause us to be worse or cause will cause us to Flare or Crash."

Please check with Dr Chris Snell, Current Chair of the CFSAC with regards to the P.E.M. (Post Exertion Malaise) and his Stacey Protocol for testing us for this that has been legally accepted in courts to PROVE that this exercise hurts us and causes us cardiac harm, and also check with Dr. Leonard Jason, CFSAC member who along with Snell testified at the NIH State of Knowledge ME/CFS Workshop April 2011 and also validated that we do NOT have ME/CFS because we are Depressed. Quite the Opposite actually. Thus the CDC MUST be made to Change their TOO Inclusive numerous changes made to the Original Definition to what CFS meant when First "coined" when the symptoms listed matched MUCH MORE the Canadian Case Criteria Definition which if you check with the Dr's that have been treating the serious patients for 20+ YEARS..  THAT is what we Truly HAVE... is ME.


And Yes, Dr Cheney found spots on the brain scans he did on his patients in the 1980s that matched the spots on the brains of HIV patients.. which again tends to lean towards evidence of a retroviral connection.. The CDC's insistence that a disease will recognize a countries boarders is about as 18th Century medicine as I have seen ~ WAKE THEM UP ~ Please... They are currently an insult to this Country.
They are sent Positive samples of Positive Viruses and "Can't Detect CR*^", as far as we feel. It's Truly embarrassing...

*** Please let him know that there are also 7 cohorts in 7 countries, tested by different labs, that have also tested Positive for the 3rd Human Retrovirus, and there has been NO definite other reliable research done to PROVE that this is NOT an actual human pathogen or why thousands of people ARE sick with this retrovirus and other co-infections of which ME/CFS is one, and that these people "NEED Clinical Trials NOW," NOT in 3 yrs or when ever the Lipkin & other studies are done... These people Testing XMRV+ "HAVE are retrovirus AND co-infections" and that alone SHOULD automatically make them eligible for Some sort of Help~ immediately !!

***One year has already passed since even the Emory University published a paper that listed numerous ARVs that could be already considered for usage for those with XMRV/HGRV. That was a YEAR ago ~ Where's the Clinical Trial... We have been sick FAR too long already with NO medicine from anyone!!

*** "Anyone Positive for XMRV and just one co-infection" should be immediately eligible for 'Care and 'Caid/'Cal and compassionate care should be granted to them IMMEDIATELY !!. TOO many of them have been sick and denied any medical care or coverage for 20+ years due to lack of research, postponement of research, diverted research funding, esp. since a retrovirus had been linked back in 1990 and because the CDC chose to not pay for 2 plane tickets they shot down the research and let it die.. NOT Again. !! All care, all meds, all long term care and hospice, the same as the HIV/AIDS patients get. Deja VU all over again 20 years later ~ NOW on the 3rd Generation.. Shameful and WorldWIDE.

***$150 Million NOW, for research that includes the Whittemore Peterson Institute, of course, with "non-blinded" clinical trials of any patients that "test positive for XMRV and one-co-infection" ...paid for the same way HIV patients get their meds (whatever that is)...'Caid? 'Care?

**** "A Separate NIH SEP for XMRV and all it's

co-infections" is a necessity given the 30 year neglect that the CDC has given these millions of Americans, the fact that there are estimated to be 10 million asymptomatic XMRV carriers in the USA alone either donating it into the Public Blood Supply or passing it on via bodily fluids, that is IF it is ONLY Infectious and not Contagious which has NOT been confirmed YET. Get ME/CFS and XMRV "OUT" of the CDC... they can't detect anything.


*** For goodness sake's Educate the Doctor's that are ON the Front Lines as right now they KNOW NOTHING and all they do is want to give us anti-depressants when we are NOT Depressed, except for the ACT that they do NOT Believe us cuz NO ONE has Educated them... This was a HUGE Point made at the NIH State of Knowledge Workshop April 7+8th.


***Educate the Dr's that XMRV/HGRV's ARE indeed Retroviruses and they should have continuing CME Units Immediately REQUIRED so that they "do NOT tell" their patients that a "Positive XMRV Serology" means they do NOT have this retrovirus IN the DNA "For LIFE". Dr's should NOT give test reports unless they KNOW the Seriousness of what the heck they are telling their patients.. The peer-reviewed "Science" published paper that announced the CFS link with XMRV was in Oct. 2009, yet in Dec. 2010 my Dr STILL did NOT know ? Must they wait for a Personal Telegram ? In the USA I finds this appalling. Do they not have required Yearly CME's that required ?

*** This also is Important as it effects not only the adults but "the SICK CHILDREN effected" and being taken awake from their parents (which is SINFUL) but the (DSS) (at the age of almost 17 years old ) and placed in their custody in January of 2009.... because they they then blame the parents for Munchausen By Proxy when they have NOTHING Else to resort to and THIS is but ONE recent example even those they have even had Help from Dr. David Bell, Dr. Paul Cheney (25+yr EXPERTS in this disease) and after 25 years THIS OF> Proof that This is STILL going on and it MUST STOP !! My goodness, Dr. Bell went thru this back in the late 1980's and it took him 10 years of legal court battles to get back one child home to their parents and the money wasted was not spent to help the child's health in the meantime. Sinful. Because of Lack of Knowledge and education about this illness.
http://www.bringingryanhome.com/


Pres. Obama would YOU want Shasha and Malia taken away from YOU if they were sick just because the Dr's could not help them YET or had not been educated YET ? This IS INSANITY !!


***Given the Family Trees that are showing up now cuz we Literally ARE on our 3rd Generation of this set of neglected illness by the CDC that continues to tell us "It's ALL in our Head"~ Please have a look at what the first evidence of Family Tree medical history is showing re: descendant generations......

In each of the 6 clusters, the top 2 are the parents with the children underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM. Under each shape is their XMRV result. V= virus found in culture, 
Av = antibody test, NT=not tested


Family 1, upper left corner – One parent XMRV + for virus by culture and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent symptomatic. Child with Autism, XMRV + for the virus.


Family 2, top row, middle – One parent with CFS and XMRV+ for antibody. Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.


Family 3, upper right corner – One parent with CFS and XMRV+ for virus by culture. Child with Autism, XMRV+ for virus by culture.


Family 4, bottom left corner – One parent with CFS and XMRV + for virus by culture. Two children with Autism, both XMRV+ for virus by culture.


Family 5, bottom row, middle – One parent with CFS, Fibromyalgia and XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.


Family 6, bottom right corner – One parent with CFS and XMRV+ by antibody. Child with Autism, not tested for XMRV.


A quick summary regarding families. Confirmed here, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with Neuro-Immune disease amongst multiple members. Finally, that more work needs to be done to confirm pathogenesis and transmission.

*** "I'm worth more than $3.64 a year"

That was the TOTAL that has been spent on Research for the patients with ME/CFS over the past decade and until the patients got Vocal enough because it was costing our lives and families and countries TOO MUCH, we just FINALLY had the First Ever NIH State of ME/CFS Knowledge Workshop that show many of the FLAWS and Gaps and blind spots and ways that time and money has been wasted. It's TIME
to Get Serious President Obama.


STOP the Generations of Ignorance, Lack of Serious research, and to Help ALL of these people, Help get treatment for those with the retrovirus and Get the FDA to Pass Ampligen as it is our ONLY thing that has helped so far.. until someone does further Quality Research.. 
TOO Much time has passed.. 

This IS effecting the children...

What would The First Lady suggest be done I wonder ?

CFS History~
How an old disease got a New Name

Presidential Contact Info: 
Please use as many as you Can, OK? 
Put them IN the mail NO matter where you ARE
on either April 29th or May 1st, OK?


Mailing address:
President Barack Obama
c/o The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500


President's email: 
"Pres. Barack Obama" president@whitehouse.gov

White House Phone Number: 
202-456-1111 (EDT)

FAX: 202-456-2461 (24hours)

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reference articles:
(1) http://whitehouse.blogs.cnn.com/2011/04/21/obama-invokes-his-faith-and-a-g-in-nevada-town-hall/

(2) http://www.rgj.com/article/20110421/NEWS/110421028/Update-Obama-ends-talk-Reno?odyssey=nav%7Chead

http://www.enewspf.com/latest-news/latest-national/23735-remarks-by-president-obama-in-a-town-hall-in-reno-nevada.html

http://content.usatoday.com/communities/theoval/post/2011/04/obama-will-root-out-manipulation-of-gas-prices/1

http://blogs.suntimes.com/sweet/2011/04/_washington--i_drove_by_a.html

#112~ "If this was HIV, it would be 1983"

For those that do only have dial-up and can not watch videos I wanted to post the text of one statement that needs to be heard Around the World. I would like to also thank the person that did this transcribing and gave me permission to repost  it for everyone to read.. cuz this needs to be known.. 

I am one of the SeroPositive XMRV plus co-infection people that has been sick since 1987 and maybe before because I have NOT had any vaccinations since the 1970s and you can't grow antibodies to something you have never been exposed to.. so any lab contaminations that may have taken place after 1992 had nothing to do with my blood or what antibodies I have created. 


The fact that there are also now literally 3 generations of sick people and some have them within one family, and some even have adoptions so that would rule out bodily fluids.. so the Real Question here also is.. is this merely Infectious or also Contagious ???


And Now~ Here's Judy ♥ 
from the NIH State of Knowledge April 8th, 2011
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Mikovits: I would like to say that what I've seen here this week says that, clearly, XMRV at best, what we originally set out to do 5 years ago was a systems biology approach. We used those genomic technologies by Gene and Mary Carrington. We used a microarray from the NCI to screen all the pathogens. And what we saw was what we heard from Mary Schweitzer, that a lot of active pathogens and things like shingles, things like enteroviruses, things like EBV, CMV, HHV6--they're all totally on in that microarray. In NCI's infinite wisdom, it didn't put XMRV on it, so that's how we ended up going back. But we didn't look with a hypothesis for retroviruses.

We took the systems biology approach, collected samples from patients who had the well-defined characteristics that Tony Komaroff talked about and that were in the Lo Study and Dan Peterson had done--these patients--had data on them for decades. We took samples over three years. So it wasn't that we found the virus in every sample. It was like the macaque study, where it quickly went into the tissues, like the mouse study that came out this week that said the antibody responses were weak and transient. We don't know everything about this virus.

But HIV does not cause AIDS. The CDC definition is HIV and one of 25 co-pathogens. So the Lyme, the EBV, the enteroviruses, Martin Lerner's patients who don't get better with Valcyte. This is a reasonable hypothesis because we see the same thing. We've developed a cytokine signature that is distinct from Nancy's cytokine signature and from Ben Natelson's. So this is a marker to follow on clinical trial improvement, but there's no doubt these people are infected. With HTLV-1, if you're seropositive and you're sick, you can get some kind of treatment.

I'm not saying antiretrovirals. I'm saying immune modulators. So the patients that are found to be infected now--and there are thousands of them--need something now, not three years from now when Lipkin decides there is an association. Whatever their disease is, they're sick. And I know John--Chia--has patients who are co-infected and they don't treat the same way, so we can get together with the physicians who have co-infected patients. Even Lyme doctors, whom we are working with across the country. We can start doing something now. Take it out of CFS. It's not about CFS. It's about a retrovirus we don't understand very well. As Frank Ruscetti said at a meeting a month or so ago, "If this were HIV, it would be 1983." That's all. 
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Thank You Patricia Carter of the  http://www.mecfsforums.com/ for permission to repost this transcription for the World to read. ♥
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If THIS is not a Call to Help the Thousands of us that ARE sick and Need Help NOW I don't know what is... Thank You, Dr. Judy, for "Caring About us" and for taking on this extremely HARD job during these challenging times while 

"The Band Plays On"............................................

Next on Deck is the CFSAC meetings on May 10th + 11th and then the International Awareness Day on May 12th.

May everyone Please "Help Raise Awareness"  ~This YEAR, HERE and NOW ♥

If XMRV proves to be Contagious... you might be Next.


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