#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?

#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


ShareThis

#72~ Annette Whittemore's article ♥ "I Hope YOU Dance"

This article appeared in Molecular Interventions June 2010. Annette tells it "like it is" and maybe some more people will realize that this issue NEEDS some REAL attention by MANY and just HOW HARD this wonderful institute, of which she is the President/CEO, is working and just how much THEY DESERVE your Support.

Their Big Yearly Fund Raiser Gala "I Hope You Dance"
is coming up in Sept.... so Please "Reserve the Date", book your Reservations NOW, and get as MANY people to come as you can. They will also be having a Silent Auction of some incredible things and beautiful donated art.

              
                 6th Annual WPI Fundraising Gala

                "I Hope You Dance"- Sept.10, 2010              Peppermill Resort Casino, Reno, Nevada
             1-800-282-2444 -  Event ID # WPI 10
For details 775-321-5974 or email kporath@wpinstitute.org

*******************************************

The Whittemore Peterson Institute

Building the bridges through private and public sector collaboration

Annette Whittemore

The Whittemore Peterson Institute’s (WPI) publication of its ground-breaking study on October 8, 2009, of the link between a cancer-related retrovirus, XMRV, and patients with myalgic encephalomyelitis/chronic fatigue syndrome (“ME/CFS”) brings a desperately needed legitimacy to a complex yet controversial and misunderstood disease (1). News of this significant association brought hope to millions around the world who have suffered in silence from its devastating effects. Perhaps, just as important, the discovery of XMRV infection in humans allows the medical world to construct a testable hypothesis of how XMRV may cause or contribute to illnesses across a wide spectrum of chronic inflammatory diseases and cancers and new paradigms of treatment and perhaps prevention.

That the discovery happened in just three years of a small research institute’s existence is almost as amazing as the extraordinary scientific work. This is the story of how and why the Whittemore Peterson Institute came to be. It is a story of multiple collaborations at every level, revealing a blueprint for other groups of dedicated scientists, doctors, and philanthropists to create greater progress through unique and selfless partnerships across nontraditional boundaries. Like other philanthropic endeavors, it began as an idea evidenced through personal suffering and acted upon after all other avenues had failed.

The personal decision to commit time and money to build an institute for patients with neuroimmune diseases came from a desperate need for medical solutions to a disease that had been destroying our daughter’s life for over twenty years. We were also faced with the reality that experienced physicians were retiring without passing on their knowledge of ME/CFS to new physicians . In addition, the existing medical establishment lacked both knowledge and medical tools to effectively treat patients who suffered the debilitating effects of this neurological disease. Around the world, those who suffer with ME/CFS have been told that their physical disorder is a manifestation of a psychiatric disease. Subsequently, these patients may then be denied medical support by their government-run health care programs.

Box 1. 
The Historical Description of Myalgic Encephalomyelitis Myalgic Encephalomyelitis was first described by Melvin Ramsey in the UK after an outbreak in the 1950s [(5–7), see also (8)]. He coined the term to describe the muscle pain and symptoms of brain and spinal-cord inflammation its sufferers experienced. In the early 1980s, an outbreak in the United States of a disease with the identical symptoms of ME was reported to the CDC. With little input from the physicians who first described the disease, a small group of scientists, doctors and psychiatrists renamed the disease from the earlier term, chronic Epstein-Barr virus, to simply “Chronic Fatigue Syndrome” (9). By emphasizing fatigue as a symptom, which is known to be associated with many chronic conditions, those with “CFS” quickly became confused with others who were simply “tired” or “burned out” from overwork. Unfortunately for those who were truly ill, and not merely tired, this misunderstanding has prejudiced scientists and doctors before they ever examined a patient with “CFS.”

Journey Through A Medical Wilderness
 
Our odyssey began in 1989, when my daughter, Andrea, became ill with a mononucleosis-like illness and then failed to return to normal health After many months of continuous relapsing and remitting flu-like symptoms, she was referred to a major medical institution for evaluation. She was given a cursory check up, then provided with a psychological explanation for her infectious symptoms of sore throat, severe head and nerve pain, swollen lymph glands, night sweats, tachycardia, and muscle aching fatigue. Even to a non-scientist that answer seemed ridiculous. The consulting physicians could offer no explanation for what was clearly a biological phenomenon.

I returned home with Andrea, determined to find a doctor who knew something about the outbreak of a disease that had occurred at Lake Tahoe, a favorite summer destination frequented by our family. A physician and next door neighbor, Reggie Davis, who had known Andrea as a healthy child and saw her frequently during her illness, was convinced that her symptoms were like those of individuals from that outbreak. He suggested that we see Raymond Scott, an internist in Reno, even though Andrea was only twelve. Before allowing her to see the doctor, I scheduled an interview with him to be sure he knew something about the disease: I was not going to allow her to be told that her symptoms were not real, as did the doctor who told her that she “most likely hated her parents, her friends, and her school.” Through it all, other physicians confirmed what I knew––that my daughter was ill with a very real disease. Fortunately, Dr. Scott had worked with other patients in the Incline Village, Lake Tahoe area and knew more about CFS than any other doctor in Reno. Although the treatments he offered provided only symptomatic relief, her life improved under his compassionate care. She continued this modest improvement until she decided to enroll at the University of Nevada–Reno. The admission policy required the measles, mumps, and rubella (MMR) vaccination prior to starting classes. Within five days of the MMR vaccination, Andrea had a severe relapse and never regained her previous level of health.

Reflections

As her health continued to deteriorate, Dr. Scott became more concerned. Soon we were on our way to another major medical institution in California, where rounds of tests and several physicians later, we ended the visit with a referral to another hospital’s pain clinic where she was told she should fill out a questionnaire everyday, then learn to live with her pain. Just eighteen years old, Andrea was facing a lifetime of pain that was so severe she required the use of a transcutaneous electrical nerve stimulation unit and injections to make it through the day.

Only after a visit to a local gastroenterologist, one year later, did we find that much of her pain arose from a diseased gallbladder. Within six months of her gallbladder surgery, she also had to have her appendix removed. We began to worry that a vital organ might soon be affected, so we followed her doctor’s advice and sought out internist Daniel Peterson of Incline Village. Months later, Andrea was accepted into his practice

Dr. Peterson has a passion for his work and his patients. He is one of a small number of well-respected CFS physicians and was one of two doctors who first alerted the Centers for Disease Control to a possible outbreak of a new disease, then dubbed chronic Epstein-Barr virus (EBV) (2). Dr. Peterson knew that something was making his patients sick and keeping them from getting well again. The CDC’s quick reply left Peterson with the impression that the CDC didn’t know what the cause was and that it did not think it warranted more attention. Without serious government-backed follow-up to validate those initial and unfortunate faulty conclusions, medical scientists were dissuaded from researching the cause of the new disease, while many more around the world became ill.

Patients who had what was now known as ME/CFS were left with modest victories to cheer and little medical hope. In 1993, Nevada became one of the first states to request that the President and Congress increase funding for research into CFS4. In addition, the Nevada legislature agreed to include the drug, Ampligen, which acts to stimulate the body’s antiviral defenses, in modest recovery models for Phase III trials. Treadmill VO2max (i.e., the volume of oxygen utilized during exercise of maximum exertion) was used as a guide to evaluate patient disability and response to treatment. When Andrea turned twenty-one, she enrolled in the phase III drug trial. Twice a week she was given an intravenous (iv) infusion that at first caused her to experience a worsening of her symptoms. Other days, she spent hours receiving nutrient iv fluids that supported her health. Finally, after one year of treatment, she began to improve with the drug and continued to take it, off and on, for eight years. Blood tests, developed in a laboratory in Belgium, helped determine some of the unique traits found in many CFS patients. After the bombing of the World Trade Center, however, transporting blood overseas was no longer an option. We and a few other patient advocates were approached by one of the owners of the Belgium lab and asked to support the establishment of a US lab that would perform the same tests. Because most of the American patients lacked the insurance to pay for the tests, my husband, Harvey, and I agreed to help and soon supported the lab in its entirety. We felt supporting this lab was critical to the ongoing work in developing and testing therapies for patients with CFS. As a result of supporting the lab, valuable RNase L studies and natural killer (NK) cell work were able to continue, which eventually led to the hypothesis that patients with CFS might be infected with xenotropic murine leukemia virus-related virus (XMRV). While taking Ampligen, Andrea improved to 75% of her previous levels of energy and stamina, but despite many of the positive outcomes, she continued to fall ill with opportunistic infections. For unknown reasons, Andrea began to develop reactions to Ampligen, making her too sick to continue. Once off the drug, she began a continuous decline. Today, without treatment she experiences daily seizures, nausea, vomiting, severe allergies, and painful lymph-node swelling. As a result, she requires nearly full-time help to care for herself and her home. Instead of answers and solutions, we were left with hopelessness.

CFS: Challenges To Overcome

The difference between the actual effects of this disease and that which is portrayed in the popular media could not be greater. The current CDC definition states that a patient must satisfy two criteria:

1. Have severe chronic fatigue of six months or longer duration, with other known medical conditions excluded by clinical diagnosis; and

2. Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than twenty-four hours.

The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue. The CDC then recommends a series of common blood tests, but goes on to predict that:

“More than 90% of patients presenting with severe fatigue will test at normal levels for the series of laboratory tests listed above. Assuming that there is nothing in the physical examination or in the personal history of the patient that suggests a clear direction to the doctor, no further laboratory testing is recommended.”

With what other disease could government health officials suggest waiting six months for a diagnosis, using tests that will only tell you what it is not, and leave you with no answers as to what it is or how to treat it? The CDC concludes that because not every CFS patient has the same abnormalities in their immune systems or brain scans, further evaluation is not necessary. Thus, scientific answers become even harder to obtain.

Perhaps what is missing most from the public’s awareness is the description of the most severely ill patients, like Andrea, who, at times, was so ill and weak that she was unable to feed herself or walk unaided. As these patients’ immune systems weaken and various chronic infections take hold, they live their lives between doctor’s offices and their homes physically and emotionally isolated from their families, friends, and communities. Many go on to develop life-threatening complications. In a retrospective analysis, Leonard Jason found that those diagnosed with ME/CFS died of heart disease, cancer, or suicide at ages approximately twenty-five years younger than the normal population. Only detailed epidemiological studies will reveal the true complications of long term disease and mortality resulting from the complications of this disease.

The problems that patients experience when dealing with the healthcare system can be as difficult as the disease itself. Most doctors have difficulty diagnosing ME/CFS and when they do, are at a loss as to what to do for their patients. The lack of medical consensus is so great that most doctors disagree on the best treatment strategies or what, if any, biological treatments to consider. Doctors and patients are left to their own devices, experimenting with drug treatments that are unproven, toxic, or both. Scientific and educational information surrounding ME/CFS is conflicting and often consists of anecdotal observations from physicians. Additionally, many patients are told they suffer from “faulty thinking” about the illness and are then prescribed cognitive behavioral therapy and graded exercise therapy.

More Than A Foundation

It was evident to me, after working with another research foundation to study CFS, that engaging various scientists to do related research projects was only one part of the solution to the much bigger issues surrounding ME/CFS. This initial research program was narrowly focused on one virus and relied on individual researchers to apply for grants. Much like the extramural grants of the NIH, these projects are scattered among different unrelated researchers and not organized in a comprehensive and coordinated manner.

One thing that I admired about the foundation’s director was her ability to access researchers to do the work that she felt might reveal new information. After reading about the XMRV finding in prostate cancer, I tried to contact the group of researchers at UCSF that had made the extraordinary new discovery. I wanted to pay them to test CFS patient samples using their viral-chip technology. After several attempts, I gave up that effort and instead began to develop another plan of action. That plan was to create a research program within the structure of a medical research center.

Many advocacy organizations had expressed an interest in government support of Centers of Excellence for the treatment of patients with ME/CFS. In fact, to address the issues of CFS, a bench-to-bedside approach was needed, requiring nothing less than an expert institution, which would combine translational research with patient diagnostics, treatments, and medical training for new doctors. When it became apparent that no one else was willing to create such a center, with the strong encouragement of my husband, family, friends, and political leaders.

Reflections

I agreed to act. With a promise from medical doctors to support our efforts, I committed my time and my family’s resources to create and build such an institute. In early 2005, Dr. Peterson and I began working to describe this institute’s future clinical practice. Meanwhile, my husband discussed with John Lilley, then president of the University of Nevada–Reno, the School of Medicine’s desire for a new medical research building. Our Governor and good friend, Kenny Guinn, agreed to place this project in his state budget. Legislative leaders who understood the potential benefits to both patients and future medical education in this state also began to offer their support. This new research facility was to house three significant interest groups: researchers from the University of Nevada’s Medical School; the Nevada Cancer Institute; and the Center for Neuroimmune Disease (now called the WPI). That winter, I gathered scientific information for a presentation to the 2005 state legislature, arguing the need for such a medical center. University representatives and Nevada Cancer Institute scientists did the same. Passionate pleas were made by several patient advocates in addition to our testimony. By the end of the legislative session, ten million dollars has been allocated to support a new research and medical office building5 (Figure 2). The main portion of the building was built from bond money which was based on the indirect costs of the researchers’ grants. My husband and I committed to give or raise an additional $5 million towards WPI’s portion of the building, and soon the construction began, bringing reality to a dream.

The Real Work Begins

Judy Mikovits and I met at an HHV-6 Foundation conference in the spring of 2006. It was at that conference that Dr. Peterson presented patient data describing many longstanding CFS patients who had developed rare lymphomas. Dr. Mikovits was intrigued and, as a seasoned scientist with experiences in retrovirology, recognized a potential for discovering a new disease causing pathogen. Shortly thereafter, I asked Dr. Mikovits to serve as the Institute’s full-time Research Director. She immediately planned a comprehensive research program to answer questions that would support the development of diagnostics to help define those who had this illness. She began by building a repository of patient samples and organizing her studies to generate sufficient data to justify an NIH grant, which was submitted in June, 2007 and finally funded in October, 2009.

Having the support of University leadership––President Milton Glick and Ole Theinhaus, Dean of the Medical School––was also critical to our success. Experienced scientists such as Steven St. Jeor, a CMV researcher; Greg Pari, an expert in Kaposi’s sarcoma-associated herpesvirus (KSHV); and Ian Buxton, a pharmacologist, offered their assistance. Soon after moving to the University, we organized a small conference as a means to formally introduce ourselves. Researchers from the University, the National Cancer Institute, and the WPI came together with ME/CFS physicians, to discuss their areas of expertise. The following year Dr. Mikovits led the first meeting of the Institute’s new scientific advisory board. Today, the WPI Scientific Advisory Board engages scientists with expertise in cancer, infectious disease, autoimmune diseases, immunology, and virology.

WPI has had to use a combination of funding mechanisms to pay for the many different activities neccessary for the creation of a working institute. Like many medical research non-profits, WPI must rely on the talents of its researchers to receive grant support and the ability of its administrators to raise funds from the larger community. When a disease is not well understood and often maligned, it is an even more daunting task. For example, it took WPI three years to receive NIH funding for reasons unrelated to the quality of the proposal.

Donations to the Institute come in many forms. WPI has a yearly gala dinner which raises hundreds of thousands of dollars. We ask private foundations, companies, and individuals for their help in a variety of ways. We have also used yearend gift appeals and a new Facebook Cause page to raise money and awareness. The WPI Web site has been a source of donations, as well. The urgent need for a continuous source of income to support the clinical work of the Institute is now our greatest priority. Generous patients, hopeful for answers, make up a significant part of the funding in this disease. They must choose between several organizations who claim to be doing important research work. It is difficult for most laymen to decipher the kind of science they are funding or whether or not the scientists are qualified to do the work. Thus, private donations which are very competitive can be spent on research that does not provide significant results. Educating the public about the importance of our organization’s own research capabilities is time consuming and requires a full time effort, but is extremely necessary if one is to gain public support.

The Intramural NCI Program:
The Value Of Basic Research

The selection of Dr. Mikovits as the research director of the WPI was fortuitous in that she had worked for twenty years in the Intramural Program for the NCI as research technician, graduate student, postdoctoral fellow and finally as head of the NCI contractor’s lab of Antiviral Drug Mechanisms. The NCI’s tumor virus program of the late 1970s supported the identification of retroviral oncogenes in human tissue and of the tumor-causing human retrovirus, human T cell leukemialymphoma virus type I (HTLV-I) by Bernie Poiesz and Frank Ruscetti, in the laboratory of Bob Gallo. By 1984, NCI investigators were co-discoverers of a new retrovirus, HIV-1, which is the causative agent of AIDS. It was natural for Dr. Mikovits to enlist the help of her former NCI colleagues, Frank and Sandy Ruscetti, Mike Dean and Rachel Bagni, to look for an infectious agent. Thus, NCI’s investment in funding basic research in animal and human virology made the discovery process possible. Initially, the discovery process focused on the use of a viruschip assay similar to the one used to discover xenotropic murine leukemia virus-related virus (XMRV) in the tissue of men carrying RNase L mutations who had prostate cancer (4). After two and a half years of trying to make sense of the viral chip data, we narrowed our focus to XMRV, because many CFS patients also suffer from an RNase L defect, and initiated a collaboration with Bob Silverman, a co-discoverer of the virus, of the Cleveland Clinic. All patient material used in this study were subjected to four separate XMRV assays: DNA PCR from peripheral blood cells (PBMC); viral protein expression in PBMC; presence of antibodies in plasma; and the recovery of infectious virus from plasma transmitted to indicator permissive cell lines. After five months of a rigorous review process, the journal Science published our findings (1).

The Aftermath: 
Still Stuck In Osler’s Web

By attempting to bring chronic fatigue syndrome (CFS research out of the shadows and squarely onto the nation’s health agenda, we knew that we would be the object of much criticism from both the medical establishment and those individuals invested in other theories of disease causation. Previous experiences had shown that some of these activities would parallel what happened during the early days after the discovery of HIV and AIDS.

CFS was belatedly recognized as a legitimate disease entity by the Centers for Disease Control in 1997 but is still denied recognition as an infectious immune disorder. The HHV6 foundation believes that HHV6 is the sole cause of CFS. A major CFS patient advocacy organization is on record, having concluded that a retrovirus has nothing to do with the pathophysiology of CFS. Much of the opposition outside of the CFS community firmly believes this disease and others that are similar arise from psychiatric disturbances. Within a week of the Science online publication, several scientists publicly announced that they would not be able to replicate the findings, negative findings were reported on blogs, and within a month, three negative papers had been written and submitted about the lack of XMRV in CFS.

Without directed research allocations from a Director of an NIH institute, it can take between three to five years before money can be allocated to study the role of XMRV in disease. Fortunately, Robert Wiltrout, Director of the National Cancer Institute’s Intramural Center for Cancer Research, has already requested that the scientists in the intramural program begin to develop reagents to determine the role of XMRV in the development of cancer and other chronic diseases. The other difficulties surrounding funding of governmental research grants are numerous, including the time it takes for the entire process to be completed. NCI has developed a mechanism to rapidly give new research funding to existing cancer centers. Unfortunately, when a new, non-traditional entity such as the WPI is created, it must often delay work until the funding is already in place. To solve these problems, we have found it beneficial to work with other institutions and experienced investigators who have offered to co-author grants in a mentoring relationship. But we have also learned a valuable lesson: a non-traditional entity may point out a new research direction, but it must be confirmed by traditional engrained mechanisms.

Reflections

Although the challenges have been significant, the personal rewards one receives by helping others through the work of this institute have been tremendous. We meet and talk often with hundreds of individuals who are thankful that the WPI is creating a scientific program of discovery that will improve their lives. They have spent too many years suffering in silence, often opting out of the medical world when they can’t find relief. Scientific efforts to solve the many questions surrounding neuroimmune diseases have brought a renewed interest in the field and hope to millions throughout the world. Below are just two of thousands of messages sent to our offices. “Canada cheered when we heard the news.” Another patient wrote, “I do not have words to thank you for the work you have done. It has now been 30 years since I fell ill and I truly never thought I would see the day this terrible knot was untied.” Therein lies the motivation, despite all obstacles, to continue this vital mission.
 
References
1. Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, et al. (2009) Detection of an infectious retrovirus, XMRV, in blood cells of patients with Chronic Fatigue Syndrome. Science 326:585-589.
2. Holmes GP, Kaplan JE, Stewart JA, Hunt B, Pinsky PF, and Schonberger LB (1987) A cluster of patients with a chronic mononucleosis-like syndrome. JAMA 257:2297–2302.
3. Jason LA, Corradi K, Gress S, Williams S, and Torres-Harding S (2006) Causes of death among patients with chronic fatigue syndrome. Health Care Women Int. 27:615–626.
4. Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, et al. (2006) Identification of a novel gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant. PLoS Pathogens 2:e25.
5. Ramsay AM and O’Sullivan E (1956) Encephalomyelitis simulating poliomyelitis. Lancet 270:761–764.
6. Ramsay AM (1957) Encephalomyelitis simulating poliomyelitis. Public Health 71:98–112. 7. Ramsay AM (1957) Encephalomyelitis in north west London; an endemic infection simulating poliomyelitis and hysteria. Lancet 273:1196–1200.
8. Ramsay AM (1986) Myalgic Encephalomyelitis: A baffling syndrome with a tragic aftermath. M.E. Association Journal 1986, UK.
9. Jason LA, Najar N, Porter N, and Reh C (2009) Evaluating the Centers for Disease Control’s empirical chronic fatigue syndrome case definition. J. Disability Policy Studies 20:93–100.

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Please write Dr. Francis Collins of the NIH and ask him
to fund important biomedical research in Neuroimmune Disease Research.
http://energycommerce.house.gov/index.php?option=com_content&view=article&id=2042:hearing-on-nih-in-the-21st-century-the-directors-perspective&catid=132:subcommittee-on-health&Itemid=72

Thank YOU Annette and Harvey Peterson, Dr Judy Mikovits, 

and every person, volunteer, Dr and patient that has helped to 

OPEN these doors in September.. 

Seriously... Just LOOK what they have already accomplished

WITHOUT A BUILDING OF THEIR OWN YET !!!

 Even if you can't come to the FundRaising Gala in September to help them Celebrate the Grand Opening together....

You CAN STILL HELP by donating even $5, $10, whatever you can... every single little bit HAS Helped.. and many patients and Annette said HAVE BEEN donating, broke and sick as they are... cuz they ALSO CARE about those that come after them.

Donate here PLEASE ♥♥♥

And Bless YOU for your Help..

It is TRULY Appreciated by the 28  million of us with this...so far.

If you can't DONATE, you can always PLEASE even forward this blog to someone that you think might be interested or willing to help... at least you will also be HELPING to Educate the Public ♥♥♥

 

#65~ CFSAC + ME/CFS/FM "Awareness DAY" Today !!

  This Wonderful Week actually started off with Mother's Day and many children delivered much love to their mothers in the way of Donations to the Whittemore Peterson Institute to HELP raise money for the URGENTLY Needed research to help everyone in a MORE timely manner... 
Kudos to all of the children and Mothers that came thru and Gave 

what you KNEW was needed and NOT just more things.. you gave 

so that you could have more YEARS with which to LOVE the person in whose name you donated...

Bless you all~ WAY to GO !!!

We are Officially in the middle of AWARENESS WEEK and it is  

TODAY International 2010 ME/CFS/FM Awareness DAY !! 

(including actually ALL Neuro Immune Diseases)

Then on Monday we had the full 1 day CFSAC meeting in Washington DC, was NOT ONLY attended the FIRST TIME EVER by the Asst. to the Sec. of the Dept. of HHS, Dr  Howard K. Koh, but he was actually ON the Agenda for a

"Welcome Statement from the Assistant Secretary for Health"

I want to THANK the person that made these videos available for the World to SEE.

Here is Dr. Wanda Jones PhD., Dr. Howard Koh~HHS,
and the CFSAC members & ex-officio members.
These are all shown here as ONE Segment with the 
"money quotes" in the 3rd part...

My thought in including these here was for those people that were unable to watch the CFSAC meeting LIVE and also for those around the world that would like to get a look at the USA  CFSAC, and this might be a good section to show and SHARE with those you Wish to MAKE AWARE "This WEEK of ME/CFS" this might HELP speak for you....






As you can tell THIS got the Week off with a Grand manner..
not exactly a CURE yet.. but an IMPORTANT STEP for CFS in the USA.

The CFSAC made quite a few recommendations that 
will be going to the HHS for Review and Reply~

They recommend that all people diagnosed with CFS do NOT donate blood~ PERIOD.

They recommend that the HHS Secretary include the education and training of medical providers for CFS in Health Care Reform.

They  categorically "Reject" the attempt to classify CFS as "Psych" in the ICD.

They also made many motions that have to do with their charter, but these I believe were the MOST Important to the patients and public.

Many other videos are already on youtube and many of the written testimonies are available via .pdf download HERE

Some of the Highlight Testimonies I also would like to share with you are as follows :

Annette Whittemore from WPI ~



We received Testimony from Nancy McGrory Richardson, Education and Outreach Director for Hemispherx Biopharma that Makes Ampligen...
explaining the FDA new requests and how they are progressing.



One Patient Testimony I REALLY wanted to bring to you was from
Dr. Mary Schweitzer PhD. Please listen to her points..


Another Testimony I wanted to you hear was from
Dr. Fred Friedberg PhD President of IACFS/ME




The activities and communications are coming FAST and Flurious
and I am adding many MORE "NEW" patient Blogs to this blogroll..for your places to go for commraderie and possible info that might help you. I've also added more to the Herbs/Meds section. I am listing these for INFO only and I am NOT advising you to take anything w/o your Dr's advice.

If you have NOT downloaded a Ribbon anywhere to add to whatever you need it for to HELP Raise Awareness PLEASE feel FREE to download one of the ones I have added at the Top and you can also still add a Twibbon to your avatar by using the Twibbon's shown. We know you by your Ribbons ♥


How many have added a BIG BLUE RIBBON to your 
lamp post or tree out front.
..to Raise Awareness in your neighborhood?

Another member, Diane Martin, from "down-under"
has also created a flyer (above) you MAY download and print and Pass OUT to your friends, Dr's office waiting rooms, any place you thing you can set some..
Thanks Diane ♥♥♥


Many folks that are having Birthdays during this time and month are
asking that everyone instead of giving them Birthday presents to 
Please Donate to  the WPI so more research can be done to HELP us quicker.


Please if you ARE a Mother or have a child donate  in their name
as many Mother and children ARE effected.. Mostly 60% Females.


http://www.wpinstitute.org/help/help_donation.html

The week is getting off to a GREAT start.. let's WRITE DOWN all the Ideas of things we aren't doing NOW so we can organize and DO THEM next year for SURE, OK?

Hope the rest of the week continues as good as the first part and that I have MORE to report back soon...

**GO TEAM GO**