#105 ~ The Transforming Faces of the CAA

The Transforming Faces of the CFIDS Association of America

Posted on March 1, 2011

Guest blog: RePosted with Permission of the Author :
by John Herd

In the early years of the CFIDS Association of America (CAA) the organization was a dynamic organization, doing its best to represent and help patients.

As Kim McCleary became more entrenched in the CAA, taking over increasingly more control of it, their [her] advocacy still began to change. Instead of acting as a diplomatic advocate trying to make advocacy headway with government officials and agencies, her actions and statement about health department activities and/or lack there of were becoming increasingly anemic.

Effective diplomacy is one thing, but increasingly respected advocates and informed patients were talking about McCleary being “in bed with the health department.”

At the same time it was becoming increasingly evident that (A) McCleary was not willing to work collaboratively with other CFS organizations or advocates, (B) that the CAA was no longer interested in providing any kind of services to aid or assist patients, and (C) that the CAA’s actions were all about what was economically best for the CAA, in McCleary’s mind.

McCleary was consolidating her power within the CAA and in the governmental CFS arena. She made a point of selecting various CAA board members who would accept her views about matters and back her up. So too was she making sure she had an inside track to health department committees and officials while doing nothing to assist other advocates, activists or patient organizations with advocacy initiatives. She was not what one would call a team player, unless of course the team one is referring to is the health department.

A high level health department official when speaking to a group about a CFS advocacy said, “When (_____) speaks (this person) speaks for the patients; when Kim speaks she speaks for her organization.” That clearly defines what McClearly has been about.

Due to personal matters the founder of the CAA, Marc Iverson, had less of a hand in running the organization. Additionally, McCleary had consolidated so much power on the organization’s board that Marc found he had diminished influence upon getting the organization back on track. Marc had his ideas about CFS advocacy and helping patients, McCleary had hers, and the differences were vast.

I can not reveal the details because they were shared in confidence, but the internal wrangling within the CAA got very ugly. Marc eventually composed a resignation letter and left the organization.

In 2004 Jon Sterling, who had become the CAA’s Chairman of the Board and several other people resigned for similar reasons. What lead up to that event seemed like a tactical carbon copy of the playbook used against Marc Iverson. Again the conflicts came down to doing what would most effectively be representing and acting on behalf of the CFS community or following McCleary’s strategies for building CAA’s sphere of influence with the health department.

McCleary’s style of impotent advocacy was taking a profoundly negative toll on the organization’s membership roster and donations to the organization. The organization’s excuse for declining membership was that much of the information it had once furnished was now available on the Internet. That excuse was nonsense; people did not feel the organization was adequately representing them.

The CAA had never made enough money from membership funds to run the organization, and clearly not enough to fund the large salary McCleary wanted for herself. She desperately needed a revenue stream and the answer was health department contracts.

For those of us in the CFS advocacy trenches that immediately reeked of conflict of interest and we said so. Given the CAA’s economic dependence on those contracts the CAA was not about to bite the hand that fed them. The messages coming from the CAA increasingly sounded as if the health department had written them. The CAA had become the CDC’s puppet.

When it became clear to McCleary that the CDC contracts were ending she needed to find a new revenue stream. Since the contracts were ending anyway she made the tactical decision to distance herself and the CAA from CDC with a series of critical statements about the CDC. Such distancing was important for her next metamorphic transformation of the CAA, that of becoming an administrative medical research network.

The CAA brought on board Suzanne Vernon from the CDC to act as their Scientific Director.

Having read the CAA’s “Research Grants Program, Request for Applications” http://www.cfids.org/profresources/2008rfa.pdf and the CAA’s “Research Grants: Guidelines, Guidelines for Conducting CFS Research Studies” http://www.cfids.org/profresources/grants-guidelines.asp it was evident that McCleary and Vernon were trying to make the CAA an administrative medical research network.

Cort Johnson, the most outspoken, ardent supporter of the CAA immediately was highly critical of me when I publicly pointed this out. He said there was no evidence to support my analysis of what the CAA was doing.

When one CFS advocate not long ago referred to the CAA as being an advocacy organization to an NIH official, she reportedly was immediately corrected by the official that the CAA is not an advocacy organization, they are a research organization. The official most likely would not have stated that if that were not the way the CAA were portraying themselves.

It would not surprise me at all to see the CAA eventually applying for government funding directly, and if need be changing their incorporation type in order to do so.

So here we are today. The CAA was not only luke warm at best about the Whittemore Peterson Institute’s (WPI) XMRV findings, they have reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding. The only logical conclusion one can draw from this is that the CAA views WPI as a research competitor. For this advocate, I have far more faith in the WPI and the medical network they have been forming than in the CAA and whatever directions they wish to steer CFS research.

I do not feel the CAA is adequately representing the bests interests of the CFS community as an advocacy organization or a research organization. The vast majority of those I speak to do not want the CAA to convey that that they are representing us when they are not doing so. While a small number of people have been critical of our speaking out about this, claiming we need the CAA because they are the only national organization, my position is that having no organization is better than one that is doing harm. If the CAA went under that may clear the way for patients to get behind creating the kind of advocacy organization we need and getting the kind of support and funding the WPI needs.



© John Herd, ’11
johnherd@johnherd.com
Original Article 

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#77~ SUMMARY of MEETING: NIH OFFICIALS + CFS Patients + Families, SEPT 7, 2010

The webcast of the 2day 1st ever XMRV International Workshop hosted by the NIH in Bethesda, Maryland will be online in a few days..maybe next week...

In the meantime, I thought you might enjoy hearing about a meeting just prior to the official workshop starting....

SUMMARY OF MEETING WITH NIH OFFICIALS AND CFS PATIENTS AND FAMILIES. SEPT 7, 2010

By Rivka Solomon, with help from Robert Miller  Contact: Robert Miller

On September 7, 2010, at 11 a.m., at the NIH campus in Bethesda, MD, a group of 9 CFS patients and their families met with high-up NIH officials. To my knowledge, this is the first meeting of its kind in the 27 years since I was first struck down with this illness in 1983. 

The meeting was organized by long-time CFS patient Robert Miller. The meeting's CFS participants (patients and family) included: Charlotte, Linda, Sherry, Scott, Marielle, Bobbi, Rivka, Robert and Megan. A wonderful surprise addition to the meeting was Dr. Dan Peterson, of Incline Village, NV, champion doctor of CFS patients and co-founder of the Whittemore Peterson Institute in Reno, NV. The meeting was held just prior to the start of the 1st International XMRV Conference sponsored by the NIH. The NIH officials present included: 

•   Michael Gottesman, M.D. ~  
Chief of NCI's Laboratory of Cell Biology and Director of the NIH Office of Intramural Research     
http://www.nih.gov/about/almanac/historical/deputy_directors.htm#gottesman
email= plotzp@ mail.nih.gov

•   Roland Owens, Ph.D~        
Assistant Director of the NIH Office of Intramural Research and Chief of the Molecular Biology Section in the Laboratory of Molecular and Cellular Biology in the National  Institute of Diabetes and Digestive and Kidney Diseases at NIH.        
http://jgh.hunter.cuny.edu/index.php/component/content/article/6-biographies/95-owens-roland-a-phd.html?directory=18

These are my impressions of the meeting. Any and all mistakes, such as misrepresenting someone's words or sentiments, are all mine. And I welcome any corrections from others.

The agenda that Robert Miller originally set for us went smoothly. It was for a half hour meeting, but in the end we were given a full hour. First, Robert had the patients go around the large table and introduce ourselves, stating how long we have been, or our family member has been, ill. Then he read a statement which included points and issues he felt needed stressing. They focused on, but were not limited to, these two key points:

1. The need for trust building....In the past, our government offices (NIH, CDC) have acted in ways that has eroded our trust in them, from the (rather amorphous) decades of neglect to, most recently, the highly concrete fact that Dr.Judy Mikovits, the scientist who found the link between XMRV and CFS, was excluded from the XMRV Conference line up until patients loudly complained. Robert said that we now need our government to act in a way that engenders our trust in them.

2. The need for funding

Funding is needed for ME/CFS research, clinical trials, and Centers of Excellence (including WPI).

(For the full text of Robert's statement, see below.) 

After Robert made his very salient, well-written points, Dr. Peterson made a statement, and then three additional patients made theirs, each lasting about 2 minutes. (My statement is included below.) Honestly, embarrassingly, I can't recall any of them. Though I do recall feeling very proud to be on the same side as Dr. Peterson. And I do recall feeling very moved by the patients' statements. One woman, the mother of a long-time patient, made a strong plea for attention to pediatric CFS issues.

After Dr. Peterson and the patients' spoke, it was Dr. Michael Gottesman's turn. He told us that he had talked to Dr. Francis Collins just that morning, and that the NIH Director wanted us to know that positive things were going to happen. "We are on track. Things will happen." He did mention that NIAID is currently setting up multi-centered clinical trials.

After he talked, we the patients started with our questions. It was a 1 hr meeting, so there were many topics and I cannot recall all of them. They included (not necessarily in this order):

 - What power and purse strings Dr. Gottesman has as Deputy Director of Intramural Research. He was pointedly asked, Can you make a commitment to us right now for clinical trials? 

Answer: Dr. Gottesman explained that his department, Intramural Research, means research done within the NIH, not outside the NIH. Intramural Research is only 10% of the NIH budget. Intramural Research is where "higher risk" research can be done (I am not sure why he brought up that point, i.e. if it relates to us or not.) My impression was that he felt he did not have a lot of say in deciding on clinical trials. My impression was that he was at this meeting because Dir. Collins wanted someone high up to meet with us, but that Dir. Collins did not have the time (or inclination? Or knowledge of our needs?) to match the person we would meet with what our actual needs were. Others may have a different impression of the situation. Dr. Gottesman did say, in so many words, that the meeting was hastily arranged, and for the short time they had to arrange it, it was pretty good to get someone as high up as he. In terms of funding, he did say, "There will be more funding, and more publications."

- Patients pointedly asked why has this illness been ignored for 2+ decades. When Dr. Gottesman said it was due to a lack of concrete scientific, clinical and medical findings and published papers, patients countered that there are 5000 scientific and medical studies on CFS already published.

- When Dr. Gottesman said that Alter's paper was the first evidence of something concrete (i.e. a virus) for CFS, patients reminded him about Elaine DeFreitus and how her viral findings were ignored and even discredited by the CDC 19 yrs ago.

- Strangely, at least to us patients, Dr. Gottesman praised the former CFS point person Dr. Strauss, saying that both the NIH and CFS patients lost a good fighter for our cause when we lost Strauss. No patients nodded their heads in agreement. Dr. Gottesman also seemed "not to know" about the disappointment patients feel towards NIAID Director Fauci. So we told him we did not feel warm and fuzzy towards him for having ghettoized us to the Office of research for women's health (I don't recall their official name), which has no money.

- Dr. Gottesman noted how dangerous it is to take anti-retrovirals when we have not done clinical trials. And before clinical trials they need to test the meds in vitro. We patients responded with the fact that there are already two published studies on anti-retrovirals that work to hinder XMRV in vitro. (We sent these two studies to Dr. Gottesman via email after the meeting.) I think it was Dr. Peterson who talked about how patients are already doing anti-retrovirals. That that is how desperate we are.

- We talked about how if XMRV or related viruses are a dead end (i.e. not a cause of CFS, and not a cause of anything hurtful to the body), we hope their interest in CFS does not reach a dead end, too.

- Patients discussed the pathetic name our illness was given, Chronic Fatigue Syndrome, and how that very name has contributed to families abandoning their sick family members because of a disbelief that they are really sick.

- Dr. Gottesman talked about how respected Dr. Alter is and how Dr. Alter's interest in our illness and his published study will change everything for our illness. Alter, and his paper, carry a lot of weight.

- When the NIH team (Dr. Owens) said more people were needed to go into the field of CFS research, Dr. Peterson said there are many good doctors who are already working on this, but not getting funding. And patients stated that the lack of funding in general, for CFS, turns off potential researchers.

- Patients talked very concretely about how funding for CFS projects and research are selected and allocated, and how the team who approves CFS research grants is flawed (noting the dentists and psychologists who are included in the team, as opposed to more immunologists and CFS experts).

- Dr. Gottesman said that for our specific concrete greivences, we need to write a letter stating those grievances and concerns and send that to the Director Collins' office. He promised us that it will be addressed and forwarded to the right person within the Director's office. 
*****(If patients are willing to send emails to Director Collins, we ask you to select something from the list of points Bob raised in his statement, found below. Pick the one or two points that you feel most effects or moves you.)


- Most importantly, Dr. Gottesman said he'd meet with us again. And I think 3 months time was suggested. We said we'd like others involved in that meeting, perhaps others from the NIH who we might suggest, due to our specific needs. Any mistakes in this assessment of our meeting are all mine. There is a good chance there are many mistakes, as it was all taken in through exhaustion, brain fog and a poor memory.

Thanks to Robert Miller for organizing this meeting, to Dan Peterson for adding the weight of his years of experience and expertise. Thanks also to the amazing patients and family members who shared difficult stories of years lost to CFS, and to the NIH officials who took the time to meet with us and will hopefully meet with us again in the near future.

-- Summary by Rivka Solomon, with help from Robert Miller

________________________________________

Robert Miller's testimony at the NIH meeting, September 7, 2010 

My name is Robert Miller. I want to thank you for meeting with us today. We are particularly grateful for your work Dr. Lo and for Dr. Alters as well, and the PNAS publication. 

I have had CFS for all of the 25 years that it took the NIH to get to this point. And still, we are only at the beginning of understanding a retroviral role in my illness. 

INTROS

1. Trust Building: The PNAS paper was critical in confirming the Science study last fall which identified a retroviral association with CFS. But the fact that it almost wasna. Even with the first XMRV conference sponsored by NIH, starting today, the researchers that found the XMRV association in CFS were not going to be invited to speak until patients protested. b. So,we present this petition, even though the study was published, because the 1016 patients who signed this petition,and many more will be watching the NIH c. We are also delivering this second petition from P.A.N.D.O.R.A. (PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY)with nearly 1600 signatures requesting a meeting with Secretary Sebelius to address the lack of funding for CFS/ME, and related illnesses. 

2. Funding.

NIH’s record of funding CFS research is near zero. Less than $2 per CFS patient per year. So patients are demanding that the NIH allocate at least $100 million dollars over the next two years to researching CFS, especially the family of retroviruses that you have now identified. 

a.  I’ve heard years of excuses at the CFSAC meetings from NIH representatives that not enough fundable proposals make it through your process. We know that right now you have a stimulus budget. We Say “Build it and They will come”. You have a huge opportunity right now to attract hundreds maybe thousands of proposals on this illness, and you need to be aggressive about it. That means changing the process, expediting the way proposals get reviewed and studies get funded, like you did with AIDS. 


b. There are many lessons from the AIDS epidemic that you published yourselves. [shown in the report]. One lesson is that funding early saves money in the future and certainly could prevent the spread of a debilitating virus. The book that gives an account of the politics behind HIV in America "And the Band Played On" describes Dr. Don Francis, then at the CDC, was turned down for $30 million in funding when he was desperately trying to prevent the spread of AIDS in 1985. That lack of early funding for HIV prevention cost the U.S. government $$$ Billions of Dollars later while addressing the HIV/AIDS epidemic, which we are still fighting.  

c.  We would not be here if the privately funded Whittemore Peterson Institute had not identified the connection between XMRV in cancer and the immune problems (RNASE L defect)in CFS patients. They had to know CFS patient histories to figure that out. That is why it is Key to have doctors like Dr. Daniel Peterson, Dr. Nancy Klimas, Dr. Anthony Komaroff and others working with NIH researchers. We need CFS Centers of Excellence funded by NIH. 

d. NIH and FDA need to drive a clinical trial process for treatments with the end goal of making safe and accessible treatments available as soon as possible. We are already experiencing the AIDS-effect of patients self-medicating with very serious medications, such as antivirals and anti-retrovirals, because many of us are desperately sick and there are no alternatives for CFS patients - none.   

a. I have participated in the only clinical trial approved by the FDA for CFS, the Ampligen (AMP-516 and AMP-511) study. I was on it 10 years ago, And I improved, the data showed efficacy, but still the FDA denied approval. After living in the DC area for 5 years, I had to up-root and move my 10-year old twin sons back to Reno, so that I could access Ampligen again, but yet To This day, I am still one of only a few patients with access to Ampligen. There is no excuse that there is only one trial in one city in the whole country to access the only treatment available. NIH needs to seed this process quickly, so patients have faith that FDA trials will bring them relief. The alternative is chaos like the early days of AIDS. 

 e. Lastly, children with CFS is a very troubling issue. Many recommendations have been made by CFSAC to address the obstacles to real pediatric care and coordination with educators and law enforcement. Children with CFS have to be part of the science. Your PNAS study also compels us to worry about passing this living torture to our children and spouses, and to worry whether every childhood cold will trigger what I have. What would you do if it were your child? 

While I am angry that it has taken decades to get here, I Still have Hope, Because, We are sitting here today, just prior to the First XMRV Conference and because the NIH has confirmed a breakthrough. 

Your speed and commitment will give us our lives back.

Thank you for allowing me to speak here today. 

-- Robert Miller ________ Rivka Solomon's testimony at the NIH meeting, September 7, 2010: 

In 1983, I was 21 when I got mono and never fully recovered. So one day I'm a straight A student leader, a mountain hiker, a global traveler, climbing the career ladder in int'l relations -- the next day I didn't have the strength to brush my teeth. Two decades later, I'm still bedridden and homebound much of the time. Two decades -- because my gov't and the medical community refused to believe my illness was real. Instead of taking me seriously, my illness was labeled "fatigue." The NIH ignored us, which was devastating. But the CDC did worse; They published studies saying CFS was an inability to handle stress, was due to childhood abuse or was an emotional imbalance. (Their most recent study saying this came out just last month.)

Last wk, 26 yrs after I got sick, my blood was tested and, yes, I have the human gamma retrovirus XMRV. My next step is to take dangerous anti-retroviral meds, even though, unfortunately, clinical trials have not been conducted.

I'm still bedridden much of the time; it will take me weeks to recover from the energy required for this meeting. But I am so glad to be here.

I am here to ask each of you, personally -- you (point or look at each NIH rep) -- to help me and the 1-4 million Americans with CFS that I represent today. 

- We want you to fund fast-track clinical trials for treatments, medications. - We want you to fund Centers of Excellence just for this illness, starting with the WPI in Reno, the folks who discovered this link between XMRV and CFS. 

We have spent the last few decades abandoned by our gov't. Abandoned. Please do what is right and help us. Now. Finally.

Lastly, I want to publicly thank Dr. Dan Peterson for believing us and for dedicating his life to us. And I want to thank my mother, who has stood by through the last 2 decades. (She was present at the meeting.) -- Rivka Solomon

________________________________________

Closing Note: In a post-meeting email exchange between Deputy Director Gottesman and CFS participant Rivka Solomon, Dr. Gottesman said he would be forwarding Rivka's 
"Dear Secretary Sebelius, Dear Director Collins" singing video to NIH Director Francis Collins. 
(Video found here: 
http://www.youtube.com/watch?v=8t1Xqp1LDxM ) 

MAY BE REPOSTED -- PLEASE DISTRIBUTE WIDELY  

#39~ Raise Research $$ while you are Searching

In an attempt to quickly 

"Kick-Start" this Fund Raising Campaign 

for the Whittemore-Peterson Institute

that is a "bottom UP" Grass Roots WORLDWIDE

organizing machine who's TIME HAS COME...

Here is a Simple way we can get started

to raise some money WHILE we are
doing our research to write our letters
to send out to our local & federally
elected officials, newspapers, etc.

It is "SO simple" in fact it was posted 
on Facebook by a number of "Great Thinkers"
that think alike and have started the rest 
of us using it already...

Simply "Search" AWAY and pass it on to 

EVERYONE and Repeat OFTEN ;-)

Each search will earn $.02 for the WPInstitute.
If all the 1,190 fans of WPInstitue on Facebook
did 5 searches a day for a year, 

it would earn $43,435.

If all of the 4 million PWC in the USA 

did it = a lot MORE.
If all of the 28 million in the World 

did it = a GINORMOUS Amount.

Who the heck said 

"Your 2 cents wasn't worth much?"

HERE it is worth a LOT 

and it will ADD up FAST if we all do it 
together and ask  others to 
"Simply Search" when they think of us..
It will cost them NOTHING to Help us
in this way.. 
Suggest that they Bookmark/Favorite 
this url / Link and go there Often...

Please share with your Friends & Family.
Ask them to "simply SEARCH" as 

part of their Holiday gift to you.

They don't have to wrap it, use any 

gas to go get it, or pay any postage

to send it to you..

Go here to participate:
http://isearch.igive.com/index.cfm?b=15271

Happy Searching and you can 
Literally add up the Good you are
doing Daily with each search.. 

So don't think you don't have any $$$

to donate for Research... if you can read this

than you CAN Search and Help us Raise

Research money for the Whittemore

Peterson Institute that helped to bring us

and ME/CFS into the current World Spotlight

and there we WILL stay until they can do 
enough Research to help us find a CURE
so our "28 million Voices 4 a CURE" 
will NO longer need to be quiet whispers 
and we will be helped, 

so "Go Forth and "Search."

#37~ Mixed news about HEB lab-Ampligen

Many of us have been hearing about previous
ME/CFS patients on trials of Ampligen and some
have done incredibly well for long periods of time
after being on it for about 18 months and others
felt no improvement at all.

Recently, Hemispherix Labs (AMEX:HEB)
posted some news about new trials they
were about to start and at the same time
we have news about a class action suit
being brought against them for withholding
info about request for info that was not complete
that needed to be submitted to the FDA.

I will present both sets of info for you here to read.

Nov 10, 2009 
Dyer & Berens LLP (www.DyerBerens.com) today
announced that it has filed a class action lawsuit
in the United States District Court for the Eastern
District of Pennsylvania, Civil Action No. 09-cv-5262,
on behalf of all purchasers of the securities of 
Hemispherx Biopharma, Inc. 
("Hemispherx" or the "Company") (AMEX: HEB)
between February 18, 2009 and October 30, 2009 
(the "Class Period"), for violations of the federal
Securities Exchange Act of 1934.

The complaint alleges that, during the Class Period,

defendants misled investors regarding the status

of Hemispherx's New Drug Application ("NDA") 

for Ampligen with the U.S. Food and Drug 

Administration ("FDA"). Specifically, defendants 

failed to disclose and misrepresented the fact 

that the FDA had requested several reports 

from the Company before the NDA could even

be considered, thus delaying the possible 

approval of Ampligen by several months 

at a minimum. 

On November 2, 2009, when the Company 
belatedly disclosed this information, the per share
price of Hemispherx's common stock dropped
from $1.45 on the previous day to $1.13,
a drop of more than 20%. The next day,
one commenter characterized the November 2nd
Company "update" as essentially an admission
"that its prior public statements were
false and misleading."

Tuesday, November 2, 2009

Update from Hemispherx Biopharma 

(makers of Ampligen)

Hemispherx Biopharma Updates Chronic Fatigue 
Syndrome (CFS) Treatment and Commercial 
Application Programs

PHILADELPHIA, Nov. 2, 2009 (GLOBE NEWSWIRE)
-- Hemispherx Biopharma, Inc. (NYSE Amex:HEB)
(the "Company"), announced a two-prong CFS
clinical mission for November and December 2009.


The Company plans to widen its ongoing clinical
programs in CFS by accelerating collaborations
with a consortium of researchers who have just
discovered a retroviral link to
Chronic Fatigue Syndrome. A clinically validated
test to detect retrovirus antibodies in patients
plasma is also currently under development
(please see US National Institutes of Health ).

With the consortium of researchers at the
Whittemore Peterson Institute, the Company is
also now evaluating the defect in
immunosurveillance in specific subsets of
CFS patients in a clinical study entitled
"Therapeutic Activation of NK lymphocytes to
Alleviate Chronic Fatigue Syndrome."
These immune defects may be due
to the previously undetected retrovirus.

The Company also plans to complete all 

outstanding queries from the FDA regarding 

its New Drug Application (NDA) for Ampligen(R),

an experimental therapeutic, 

during November and December, 2009.

On May 26, 2009, the Company announced a delay
on the Ampligen NDA which, at the time, had a
PDUFA date of May 25, 2009. As noted in the
10-Q and 10-K filings at the time, the FDA did 

not request "additional information" from the 

Company at that time. However, several 

outstanding NDA items, requiring Hemispherx

responses, existed at the time of the FDA delay

as noted in the August 8, 2009, 10Q filing.
Between March 9, 2009 and September 15, 2009,
the Company issued six (6) new reports to the
Agency spanning various subjects including
a) clinical safety assessments,
b) specialized pre-clinical toxicology reports, and
c) abbreviated chemistry and manufacturing
control reports.
The Company believes that these reports may
fully retire all Agency queries in these
particular areas.


The Company also plans to submit four (4)
additional reports on interrelated topics in
November and December, 2009, which will
include pharmacokinetic analyses in multiple
lower animal species (primates, rodents, etc.)
("the Lovelace Laboratory Studies") and final
validation reports of certain manufacturing
procedures conducted at an independent facility,
Hollister-Stier Laboratories in Spokane, WA.
Some of these reports were recently cited in
BioMedReports.com and the
Science Business Exchange (October 15, 2009).

Information contained in this news release other

than historical information, should be considered 

forward-looking and is subject to various risk factors

and uncertainties.

The Company disclaims, however, any intent
or obligation to update these forward-looking 

statements. Clinical trials for other potential 

indications of the approved biologic 

Alferon N Injection® do not imply that the product

will ever be specifically approved commercially for

these other treatment indications;  

Similarly, the completion of NDA filing process

with Ampligen® does not imply that the product

will ever be approved commercially. 

"partial press release" reprinted from:

Hemispherix Biopharma website 

Personally as an investor that HAD owned HEB
during the time mentioned in the class action suit

I agree that HEB was NOT forth-coming with the

actual facts of the matter...However, as I was NOT
in for the "long haul" but the trade>had let the stock
"pop up">sold my holdings>made my profit, and
was a Happy Camper. I will NOT be participating
in the class action, however I had a feeling back 
then when I was reading their website and saw 
some weird changes being made that something 
was a bit "fishy" as they say...

Unfortunatley, in this day and age, whether you
are a patient or investor
the Same RULE applies:

"Caveat Emptor"

#15~ Reply from WPI - testing for XMRV?

Thank you for your interest in the Whittemore 

Peterson Institute and our new research findings 

on XMRV.  We have been overwhelmed with both 

your encouraging comments and the volume of 

email and traffic to our web site.  We are working 

on answering many of the general questions posed 

in the last few days.  Individual specific questions 

will be evaluated and responded to as appropriate.

- XMRV Testing:   The number one request has 

been? How do I get tested for XMRV?  The WPI is 

negotiating an agreement with a clinical laboratory 

to allow for limited testing. These limited test services

will be made available as soon as possible and we 

will provide information on this website as to how 

the test can be requested.  We cannot offer 

individual testing and results from our research lab.

Please check back to our website for updates.

- Research Studies:   If you are interested in 

possibly being selected to participate in ongoing or

future WPI research studies, we are working on an 

interactive form for our website.  It should be 

available in the next few days, and we encourage 

you to complete the form at  

WP Institute for Neuro-Immune Disease.  

While every study has specific requirements and 

not all who volunteer will be accepted, your 

willingness to participate is both crucial 

and deeply appreciated.

- Becoming a Patient:      WPI is currently 

constructing our new home on the campus of the 

University of Nevada School of Medicine.  

It will open in the summer of 2010.  At this time 

we are not able to accept patients, but would be 

happy to add your name to our interest list.  

With the rapid pace of research discoveries, we 

hope that there will be new treatment and 

diagnostic options available when we celebrate 

the opening of the new building.

The discovery of XMRV in ME/CFS patients 

opens an entire new avenue of neuro-immune 

disease research and our discovery has brought 

to this field world-renown immunologists and 

retrovirologists.  Our team of collaborators is 

working daily to translate our discoveries into 

new treatments as soon as possible. 

The discovery also raises many new questions 

about the role of XMRV in these diseases, 

how it is spread, what new or existing treatments 

may help combat the virus, and how treating the 

virus might improve the health of patients.  

For access to what we know to date, please see 

our XMRV Q&A.  

We will update it regularly and keep you informed. 

Whittemore Peterson Institute - XMRV Q & A

We know many of you have been waiting years 

for answers, accurate diagnoses and some kind 

of effective treatments.  All of us are dedicated 

to finding these, and we will continue to work as 

hard and as quickly as possible.  

Please remain hopeful, and keep in contact with 

us via the website or email.  

Making sure we have all of your contact information 

will ensure we are able to contact you with 

further information as it becomes available to us.

Angelina Gordon, WPI

#11- we ARE the NEWS------------> "XMRV" a link to MECFS

Yesterday, ALL Day in the USA and even
today in the UK news Headlines
WE "are" the News...

A New 3rd Retrovirus has been determined to
be linked almost 95% to ME/CFS patients.
I am currently TOO exhausted due to working
all day to spread the news around the world
getting it out to the 28 million of us via Twitter.
I Tweet with ME/CFS patients in Canada,
the U.K., Australia, New Zealand,  Belgium,
Germany and more..

Let me just refer you to 2 articles
so you can read the medical part
and a patient blog that both sorta
sum it up at the moment.

Sum it up to say that after 22 years
and if you refer to my post #3 you
will understand WHY this is REALLY
BIG News for us ALL and many more..

exhausted and sore I leave you now
with 2 articles....

if you want MORE just Google
" XMRV, chronic fatigue syndrome"
and the list will be LONG that pops up.

Game Changer

Whittemore-Peterson site
also check out the News &
Q&A section.

If this were the SETI project...
Our voice is going to be Heard now..
We ARE on the radar ;-)
Please spread the Word, OK?

Kinda funny that this is the SAME DAY
as NASA will be exploding a rocket
INTO the Moon, and just now
Breaking news...
Pres. Obama wins the
"Nobel Peace Prize."
Definitely a History making Day!

#9- Dr. Judy Mikovits, PhD, to report Oct 19th

Dr. Judy Mikovits, PhD, will present her
important new chronic fatigue syndrome
research findings in Lisbon, Portugal on
Monday, Oct 19, at the Tri-Society Annual
Conference 2009. Dr. Mikovits is
Director of Research at the
Whittemore-Peterson Institute for
Neuro-Immune Disease in Reno, Nevada.

We have been awaiting some research
that will come from them, so this
hopefully will be of some IMPORTANCE
to us.. time will tell... to be continued.

I have just added a video of a presentation
made in 2008 by DR. Daniel Peterson,
on the right under videos, he is the
Peterson of this Institute.
 
WPI.org