#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?