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Dec.2014 LauraHillenbrand FaceTheNation
ME+Unbroken Interview HERE -

Dec 2014 ~ "NIH"P2P4ME"

NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
DraftReport HERE
Nov.2014- "Plague"-Published !!
VOA-PodcastAudioInterview HERE
Amazon USA Link HERE

Thursday, April 29, 2010

#62~ NEW Members of the CFSAC, brief UPdate

As you ALL know by now the CFSAC will be meeting on May 10th, 2010 Wash DC
and it will be Open to the public and will be webcast.

Realplayer is required to view the webcast, and 
I "HIGHLY Suggest" you download it at least the day BEFORE and Make sure it works OK...
The meeting will also be archived for future viewing on the CFSAC website.

I have posted the hours and agenda in a previous post. 

Here's ANOTHER Testimony submitted  for the meeting:
The CFIDS Association submitted a 5-page written statement:
CEO Kim McCleary will attend the meeting and will present an abbreviated
form ( aka 3 minutes) of these recommendations during the public testimony.

NEW CFSAC Committee Members:

Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14 (new)

Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14 (new)

Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14 (new)

Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14 (new)

Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14 (new)

Wow...5 NEW Members as of this next meeting Date?
I wonder who they are and what their credentials are?
And how much of the past CFSAC History they are familiar with? A little written background would be appreciated since they are Representing us, ya know?
A link with a brief Bio "would have been" REALLY Nice ♥
Do any of you know who these folks are? P_lease let us know if you do...OK? Thx

Please remember to get your Blue Ribbon for your online avatar so HELP Raise Awareness for ME/CFS/XAND ~ ASAP ♥

#61~ Annette Whittemore CFSAC Testimony 5/10/2010

Written Testimony Submitted to the CFSAC by Annette Whittemore/WPI  for the CFSAC May 10, 2010 meeting.

Reprinted with permission from the WPI.

Whittemore Peterson Institute
Testimony of Annette Whittemore
April 25, 2010

The United States governmental entity responsible for alerting and protecting the American public from threats to their health is the Centers for Disease Control, better known as the CDC.  The CDC’s mission is to collaborate to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.

Yet, one to four million Americans still suffer from a poorly understood, debilitating disease which was first identified in the United States in three separate recorded outbreaks over 25 years ago, including:

Incline Village, Nevada
Lyndonville, New York and
Miami, Florida.

The individuals who became ill that year came from various economic classes, different age groups, including children and adults and affected people in a small rural town, a large lakeside community and a huge metropolitan area.   The individuals in those outbreaks all exhibited the same complex symptoms, yet none of the patients were examined by the government employees who were sent to investigate. 

The doctors who alerted the CDC were not told of the other communities in the United States experiencing the same phenomenon.   Despite the serious concerns about the severity of the patient’s symptoms and their rapid decent into disability, the CDC refused to investigate further.  The CDC concluded that this was a new form of EBV mono.  They convened a meeting, in which they decided to call this illness “chronic fatigue syndrome” rather than adopt the name that was being used in the UK: myalgic encephalomyelitis (M.E.).  M.E. at that time was already a well characterized infectious neurological disease causing a similar complex illness.

Thus began a twenty five year battle between patients and doctors who fully realized the severity of this illness and a government that has yet to commit an appropriate level of financial resources to aid the discovery process necessary to help individuals with this disease.  Not only has the lack of adequate resources been a major road block to discovery, but the CFS scientific review committees are currently ill-equipped to review many of the biologically complex scientific grant requests.  Attempts to engage in biological research by basic researchers from virology and retro virology have generally been turned down in favor of studies aligned with a psychological theory of illness. 

Years of misdirected research have resulted in a lack of a medical specialty for this group of patients to rely on for expert care.  Doctors have been left without adequate knowledge and the tools to effectively care for their patients. The sick have been turned away by major medical centers, ignored by government, and their claims denied by insurance companies who refuse to pay for diagnostic tests and experimental treatments.

How could this happen to such a large group of sick people in this day and age of modern medical technology?  Who could possibly benefit by this inhumane treatment of sick human beings?

My husband is fond of the quote made popular in the Watergate era: “follow the money”.  His take on it is more specific: When something doesn’t seem right, “follow the money”.
So if one follows the money in this case, we can perhaps begin to unravel the mystery of this crime against humanity.  We know that when this disease was first reported to our governmental authorities, another more deadly illness had recently been identified, HIV-AIDS.  Our nation was debating how to approach this new “gay man’s disease”, until it struck a young child and a famous athlete, neither who were gay.  Countries around the world were struggling to meet the heavy demands of HIV, when myalgic encephalomyelitis began to take its equally heavy toll on the lives of the innocent.

But this disease was a disease that apparently could be ignored.  It seemed to impact mainly woman.  There was no immediate organ damage that could be detected.  It did not kill the afflicted rapidly enough; it only caused a profound disability that could last a life time.  

However, a life time of disability requires a life time of disability payments and huge medical bills; something no government or private health insurance provider wants to be responsible for.  The only way to avoid medical and disability payments for the sick is to claim the illness is due to a psychological disturbance or mass hysteria, blame the patient for their illness and offer cheap psychological treatment and exercise therapy.   As long as no one discovers the true cause of the disease, these entities are safe from any expectation of actual medical intervention.  A physical disease may remain in the psychiatric domain if it is called a psychosomatic illness; “meaning a disorder in which mental factors play a significant role in the development, expression, or resolution of a physical illness.” 

Despite years of private research and thousands of papers describing the physical deficits found in these patients with this illness, our government and medical entities continue to ignore the evidence in favor of those who espouse a simplistic psychological theory of illness. 

But those who stand to gain by misdirecting research funding can not stop the truth from being revealed.  What greater evidence is required to support the request for responsible action than the finding of a new human retrovirus replicating in this population of patients?  Knowing the significance of this discovery, why has the US government not asked CFS patients to stop donating blood until the cause of this disease is better understood? 

Prostate cancer and XMRV research has been made a priority at the National Cancer Institute and major universities as evidenced by the publication of new findings.  Yet, there has been no such commitment by those at the National Institute of Allergy and Infectious Disease.  Why is this?

Are we to blindly and meekly accept that those who suffer from XMRV (who have been inappropriately branded as having a fatiguing illness called “CFS”) are undeserving of the same medical care afforded others infected with a retrovirus?

I believe this is not time to end the CFSAC but rather a time for the CFSAC to exhibit its commitment by sending its strongest recommendations to the Secretary of Health and following those recommendations with actions:

·      Educate the research and medical communities about the number of individuals impacted and the severity of this disease.  Recommend that the CDC define ME by the immunological and neurological abnormalities that exist, the many co-infections that are frequently found and the physical complications of this long term illness.  It is time to agree on a proper name for this disease and to reflect the most current scientific knowledge in the definition of this disease.

·      Seek congressionally mandated research dollars that more closely match the number of individuals impacted by the disease and the severity of the illness.  Millions of Americans are ill with ME and yet the NIH allocates a mere $1.00 to $4.00 per year per person.  The loss in economic dollars is conservatively estimated to be $9 billion per year.  With that kind of economic loss to our society, why isn’t this disease funded at the level of hepatitis C which is currently at $93 million a year? Patients diagnosed with ME also suffer from inflammatory bowel disease, cognitive impairment, fibromyalgia, anemia, gall bladder disease, chronic Lyme disease, sleep disorders, chronic pain, depression, hormonal dysregulation, frequent viral infections, heart disease, and cancer.  Yet these sick Americans are forced to seek unproven medical treatments for symptomatic relief due to the lack of scientific understanding of the underlying immune deficiency that is driving this disease.

·      Request that research be conducted on XMRV in infectious disease by the NIAID and outside researchers to continue the valuable work begun at the WPI.  The human retro virus, XMRV, has been found by WPI researchers in diverse disease populations, including cancer, autism, fibromyalgia, gulf war illness and ME, in men, woman and children.   Yet four of WPI’s most recent grants were denied funding on the basis that not enough is known about XMRV to warrant further investigations. 

·      Create and fund Centers of Excellence in neuroimmune diseases to care for patients with complex disorders caused by infectious agents.  Scientific medical criteria should be developed that hold these Centers to standards of performance that include timelines and effectively measure demonstrated outcomes.  All such Centers should be interconnected to provide medical consistency in care.  They should include research, clinical care and medical education components from classroom lectures, to residencies and fellowships in neuroimmune disease.

·      Request a congressional hearing to determine why this disease has been so poorly managed by the CDC and NIH, in order to assure the American public that the failure to recognize a serious threat to the nation’s health will not be repeated.

There is no question that the CFSAC, as defined by its charter, can be an important avenue to a meaningful discourse between those who care about M.E. and those who are capable of initiating action from within the government.

The question is: Has the CFSAC achieved the goals stated in their charter?

The charter states its purpose … established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS).

Is this goal being aggressively pursued?  Is scientific evidence being reported to the Secretary of Health?  What actions have been taken by the Secretary of Health that would provide evidence that this information is being acted upon?

The Function of the committee is stated below:

The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including: (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic and research communities about chronic fatigue syndrome advances

The WPI took the earlier recommendations of this committee seriously.   In fact, we built our Institute on the premise that this disease and others very similar to it, deserves “Centers of Excellence” that can bring answers to patients and doctors, in the same manner as multiple sclerosis and muscular dystrophy have successfully done.  We believe that to find answers to this complex disease we must combine the translational efforts of basic and clinical researchers working in collaboration with knowledgeable physicians.  This is the dream of the WPI: to bring discovery to a disease which has impacted millions of lives, to develop effective treatments and to one day provide preventative measures that will stop the spread of the disease.

This is not something that we can afford to do alone.  If this committee will confirm that it is more than a sounding board for frustrated patients and doctors and that it can effectuate the necessary changes in this field, then the WPI fully supports the renewal of its charter.
Martin Luther King, Jr. once said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy”.  I believe that courage is the combination of knowing the right thing to do and then doing it. Please show us you have the courage to make this happen.

Thank you for your time and attention.  

Wednesday, April 28, 2010

#60~ Thanks Dr Peterson for EVERTHING~ WPI ♥♥♥

Whittemore Peterson Institute announces search for medical director.
Planned transition paves a smooth path for the fall opening of the new Institute
Reno, Nev.

As part of a planned transition, the Whittemore  Peterson Institute (WPI) announces the national search for a full time Medical Director as 
Dr. Daniel Peterson retires from this position.
Dr. Peterson, a pioneering physician in describing methods of diagnosing, managing and treating myalgic encephalomyelitis (ME/CFS), was one of the
first physicians to identify this disease in the United States.

“Dr. Peterson was central figure in the establishment of the Whittemore Peterson
remarks Annette Whittemore, founder and president of WPI.
“We are deeply grateful to him for his significant advice and support through
the development of the Institute.”

“I am extremely proud to have been a part of the creation of this medical research
institute which promises to bring exciting new answers to patients with
complex neuro-­‐immune diseases,” states Dr. Peterson who will continue his
internal medicine practice in Incline Village, Nev.

The WPI will soon begin a national search for a new full-­‐time medical director
and practicing physician with extensive experience in infectious disease, clinical
trials and medical management.

The Whittemore Peterson Institute will move into a new 100,000-­‐square-­‐foot
state-­‐of-­‐the art research and medical facility, the Center for Molecular Medicine,
at the University of Nevada in the fall of 2010.
Dr. Judy Mikovits will continue to lead the comprehensive research program at the
WPI, which will be the first in the world dedicated to neuro-­‐immune diseases
integrating patient treatment, basic research, clinical trials and medical education.

To learn more about the institute and ongoing research, please visit

For the FULL article download the pdf.

#59~ CFSACmeeting~ 4/10/10 Public Comment ???

Would YOU wait bedridden for 6 months for a 3 min. public comment?

I was SO Shocked and Personally INSULTED when I saw this that I just HAD to post about it to all of you... Are you AWARE that not ONLY will this be a ONE DAY (instead of the usual 2 ) meeting BUT the Public Comments have been reduced 
to 3min each ( instead of the usual 5 minutes ) AND NOW I SEE that there will 
ONLY be 30 minute IN TOTAL allowed for Public Comment ??? 

That is a HUGE Slap in the FACE to the Constituents they ARE Being PAID to Represent and they won't even give us adequate time to comment ?  I HOPE all commentators have brought FAST SPEAKING Helpers or a prerecorded version 
that they can play in FastForward Mode "chipmunk voice" so that their entire statement  CAN be made.. Sheez.. 25 years of PTSD and now this ???

THANKFULLY, Annette Whittemore of WPi HAS been granted 3 minutes to speak. Hallelujah ~

If the QUALITY of this MEETING is NOT EXCELLENT enough to make up for the lack of time/days allowed... I think it is TIME for there to be a VERY Vocal 
Public Input... I won't say exactly WHAT and to WHOM yet we will be directing
all of our input, (obviously Elected Officials ) among MANY Other PLACES...

I'm talking a HUGE Patient UNITED Campaign... WAY MORE than the CFIDS Assoc has ever done.. as WE WILL BE HEARD THIS TIME .... IT IS TIME FOR THIS 
DISGRACE AND Lack of HELP to those of us that WANT to be WORKING AND PAYING TAXES AGAIN.. Hello ? Help this Economy ?? Do I need to add up for you the MILLION of Dollars/Sterling/Euros that the NEGLECT of the ME/CFS Community has COST not only the USA but the UK and other countries
around this world.. It might be truthfully enough to make a REAL dent 
in the deficit.

But FIRST, some folks NEED to Take the PLUGS OUT Of Their EARS
and "Get a CLUE"...

I *Thought*  we were having a World Recession...TOO BAD they decided NOT to help 28 million people that COULD be Working and Helping our countries... but NO.... We ARE Being ignored and falling thru the cracks and unless this meeting BLOWS the ROOF OFF the Building...because it is SO FANATASTIC.... then our plans WILL be put into action...
Enough is Enough...
We WILL Be Silent NO MORE. Period !!!

Please Be SURE to "Tune IN" on May10th or whatever DAY/Time it is based on your timezone ♥♥♥ 

For further contact:
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX) (Email)

                                    May 10, 2010

             9:00 am
Call to Order

Opening Remarks
Roll Call,

Dr. Christopher Snell
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official
            9:15 amWelcome Statement from the Assistant Secretary for Health
New Members Statement on CFSAC Interests/Goals
Dr. Howard K. Koh

CFSAC New Members
          10:00amRemarks from Dr. Elizabeth UngerDr. Elizabeth Unger
          10:30amBlood Safety Update on XMRVDr. Jerry Holmberg
          11:00amReview/Update of past CFSAC recommendationsCommittee Members
          12:30pmSubcommittee LunchSubcommittee Members
            1:30pmPublic Comment
(on CFSAC charter)
            2:00pmReview and Discussion of CFSAC Charter and ByLawsCommittee Members

#58~ DSM-5 Letters sent by WPI and more

Open Whittemore Peterson Institute response here in PDF format:
WPI DSM-5 statement 

or here:
April 16, 2010
DSM-5 Task Force
American Psychiatric Association
1000 Wilson Boulevard Suite 1825
Arlington, VA 22209
Members of the DSM-5 Task Force:
The Whittemore Peterson Institute would like to address the potential revision of the American Psychiatric Association’s (APA)’s Diagnostic and Statistical Manual for Mental Disorders (DSM-5). The APA’s proposed changes would combine several existing somatic categories into one larger category, Complex Somatic Symptom Disorder, adding language that closely resembles the CDC’s criteria for Chronic Fatigue Syndrome with additional sickness related behaviors that are often evidenced by those who are ill with a disease when it is poorly understood and characterized symptomatically.
The following language has been proposed:
To meet criteria for CSSD, criteria A, B, and C are necessary.
A. Somatic symptoms:
Multiple somatic symptoms that are distressing or one severe symptom
B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:
High level of health-related anxiety.
Normal bodily symptoms are viewed as threatening and harmful
A tendency to assume the worst about their health (Catastrophizing)
Belief in the medical seriousness of their symptoms despite evidence to the contrary.
Health concerns assume a central role in their lives
C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least six months).
Recent findings by researchers at the Whittemore Peterson Institute, the Cleveland Clinic and the National Cancer Institute have found a link between those who have been previously diagnosed with Chronic Fatigue Syndrome, (ME/CFS) and a new human retrovirus, XMRV. Yet ME/CFS is currently diagnosed symptomatically and requires the patient experience 6 months of severe fatigue. This disease is chronic and often causes a great deal of anxiety for those who suffer from its debilitating symptoms. Therefore, an individual suffering from ME/CFS could be erroneously classified within the new DSM-5 category as a somatic disorder when in fact they clearly suffer from a chronic infectious disease process, evidenced by many physical abnormalities. (Low grade fever, sore throat, severe headache, cognitive dysfunction, and enlarged lymph nodes, and painful joints and muscles).
The new language also adds undue concern about one’s health as criteria for establishing the diagnosis of complex somatic disorder. This is an immeasurable description of behavior that suggests that if one is suffering from an unknown illness and expresses deep concern or seeks answers from multiple sources (a potentially perfectly natural response to such a circumstance) that one could then be classified as having a somatic disorder. Yet, newly recognized diseases require time to develop the appropriate conformational laboratory tests. During that period of time, does it not remain the responsibility of physicians to recognize the patient’s illness and reassure the patient that they will do all they can to alleviate their suffering?
A person who is afflicted with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is often incapable of taking care of their own most basic needs. The swiftness with which one is incapacitated without relief often results in accompanying depression and anxiety. If this patient is advised not to believe their own symptoms of illness they may become further traumatized by the doctors whose sworn duty is to “first do no harm”.
The Whittemore Peterson Institute is deeply concerned that there will be future complex biological diseases of unknown origin, which could too easily be ignored as the result of the diagnosis of “complex somatic disorders”. This would result in serious consequences for those patients who continue to decline in health without appropriate medical interventions.
The term CSSD may also serve as a diagnosis to be used by physicians who currently lack the sophisticated diagnostic tools to describe a new and emerging illness, causing serious harm to those who are ill. Two such recent examples of diseases once categorized as somatic illnesses are multiple sclerosis which was originally called, “hysterical women’s disease” and gastrointestinal ulcers. Only after these diseases were pursued by those who believed in their physical causes with subsequent biological research, were medically effective treatments made available. Thus creating a somatic diagnosis, when there is in fact a physical illness, would relegate a population of patients to many more years of suffering, while basic biological research funding is denied.
For these reasons, the WPI requests that the APA thoughtfully examine the purpose and possible unintended consequences for the encompassing somatic category of illness, Complex Somatic Disorder, and emphatically requests that the DSM-5 task force reject CSSD, as a medical or psychiatric diagnosis.

Annette Whittemore
Founder and CEO
Whittemore Peterson Institute
6600 North Wingfield Parkway
Sparks Nevada 89436
Phone: 775.348.2335

Fax: 775.348.2350 

I have also added a lin on the Right column for the DSM-5 Watch blog
where other letters will be posted and you may go there to check on
a regular basis to check on  the progress of this issue, OK?
Please STAY on TOP of this... it is IMPORTANT to OUR Cause also...


Comments are always appreciated and welcomed...
I have just had to set them to Modersation because of the SPAM
commenters... I will approve REAL comments each day ~
Thanks for understanding and KEEP Posting ♥

Monday, April 26, 2010

#57~ Happy Birthday (mom) Annette/WPI + CFSAC

Happy Birthday sweet momma Annette Whittemore ♫ ♥❀✶ ♫✮♥
 ♫ ♥❀✶ Happy Birthday to you... WE ALL ♥♥♥♥ YOU !!!

Let's RAISE the Research Bounty at WPI by all donating
Simply ** $10 EACH** ... " if we ALL do that "

it will make her SMILE~ 4 Sure ♥       

Either thru:

Facebook:     ♥CURE4ME♥

via their website: WPI

Have GREAT Happy Birthday realizing the HUGE New FAMILY 
now that LOVES YOU ♥♥♥

Happy Birthday in EVERY Language From all 28 million around the World

Maybe READING more Letters and watching the meeting will make you APPRECIATE Annette Whittemore EVEN MORE.... and SEE "WHY" we NEED to back WPI as much as Possible..  Please...

Also on THIS Day was the DUE DATE for the written emails and Letters
that  the public could submit to the CFSAC...I have seen some good ones
and wish to THANK Personally everyone that has contributed and made their VOICE HEARD.

In addition to the ones I have already posted on this blog...including my own,
I have found a few more to share with you so you can read them Before
the Meeting May 10th or wait for them to be uploaded as pdf's on the CFSAC website months from now....I hope by them the LIST will be HUGE....

So with no further lead in.. here are the ones I have located to date:

Mary Schweitzer

Khaly Castle

and Here's the Roster of CFSACommittee Members for THIS May 10th, 2010  meeting.

Voting Members


Christopher Snell, PhD

Stockton, CA
Term: 04/01/07 to 04/01/11

Ronald Glaser, Ph.D.
Columbus, OH
Term: 04/01/07 to 04/01/11

Arthur J. Hartz, MD, PhD
Iowa City, IA
Term: 04/01/07 to 04/01/11

Leonard Jason, PhD
Chicago, IL
Term: 04/01/07 to 04/01/11

Nancy Klimas, MD
Miami, FL
Term: 04/01/07 to 04/01/11

Jason Newfield, Esq.
Garden City, NJ
Term: 07/01/06 to 07/01/10

Seems FUNNY to me that they are appointing someone to be the CHAIR
whose Term ON the Committee expires NEXT Year... Great Continuity of Leadership...NOT.
Can we appoint someone that will BE there longer than one year folks ??
What is this Musical Chairs? WE do NOT think this is a Humorous subject...OR something that should be taken LIGHTLY>>> but they wait until the last minute and then nab someone already ON the committee that will just be there one more year... NOT MUCH Foresight in this action or Lack thereof...

OMG ~ Did you ALSO Notice that
"5 out of 6 VOTING Members" are also 
going to be Exiting next April ? 
Between the exodus after the last Meeting and next April.. won't be MUCH CONSISTENCY at all 
on the Committee...IMHO....and WHO has Brainfog?

For those that can't read the nameplates quickly on the "Real NOT Player"
or have never watched a meeting Before.. there are the names of the rest of the cast.... to make it easier for you to watch and keep the players straight in this production.

Ex Officio Members
Centers for Disease Control and Prevention (CDC)
J. Michael Miller, PhD
Associate Director for Science
National Center for Zoonotic, Vector-borne, and Enteric Diseases
Ermias Belay, MD
Associate Director for Epidemiologic Science Division of Viral and Rickettsial Diseases National Center for Zoonotic, Vector-borne, and Enteric Diseases
Food and Drug Administration (FDA)
Marc W. Cavaille-Coll, MD, PhD
Medical Officer Team Leader
Division of Special Pathogens and Immunologic Drug Products
Health Resources and Services Administration
Deborah Willis-Fillinger, MD
Senior Medical Advisor
Office of the Administrator
Center for Quality
National Institutes of Health (NIH)
Eleanor Hanna, PhD
Associate Director for Special Projects and Centers
Office of Research on Women’s Health (sorry guys with ME/CFS) LOL
Social Security Administration (SSA)
Cheryl A. Williams
Acting Director
Office of Medical Listings Improvement
Mike O’Connor
Supervisory Team Leader
Office of Medical Listings Improvement
♥ Wanda K. Jones, DrPH  ♥


Sunday, April 25, 2010

#56~ SCRAP the CRAP to CFSAC

Reprinted with Permission from the Author.....

Folks PLEASE get your Emails OUT to -

     Thanks and Blessings to you all 


TO: CFSAC, President Barack H. Obama, VP Joseph Biden , DHHS Sec. Kathleen Sebelius, ACLU (Washington, D.C.) Chair, House Energy and Commerce Committee, Chair, Senate Health, Education, Labor and Pensions (HELP) Committee

Welcome new Members! 

I thank you for your service to us, the patients without a voice.

Today the name of my Statement is SCRAP the CRAP, for some of us want to tear the Charter to pieces in front of the three major networks’ cameras, but heck, they too have abandoned us to the psychobabblers.

Dr. Jones, I honor you for your administration of these meetings. Thank you for the streaming video; however, could you get “audio only” added for the dial-up connections? I also ask for a return to 5-minute statements, and that these be added to the language of the Charter.

Now, regarding “scrap the crap”: I am so dismayed that at this vital time, when real science is finally showing the distinct possibility that a retrovirus may be either the cause or a serious contributor to the long-term effects of CFS (such as cancer and shorter lifespans), we are discussing the Charter. Didn’t the last two meeting of the CFSAC show where its priorities lie?

I therefore demand a return to the science and that the Charter be changed to reflect the true name of this disease, which is Myalgic Encephalomyelitis, or M.E., as the Canadians,and other enlightened nations have done, and which has been recognized by the WHO for over forty years. In addition, I demand the M.E. diagnostic code be reinstated in the U.S. at once.

The CFSAC Charter should be renamed the CFS/ME Advisory Committee in accordance with the above, in order to maintain their intertwined relationship in research and scientific studies.

My last request (demand, if you will) is that patient’s be given a stronger voice, by including language in the Charter that would allow the CFS/ME-AC to request a Congressional Inquiry into the lack of responsiveness from the DHHS to the Committee’s past recommendations; and further, investigation into the violation of patients’ human and civil medical rights from the lack of appropriate testing and treatment for a known disease process; if, after 60 days, the Committee’s recommendations have not been addressed by the DHHS, in writing, and with actionable intent, with Internet access to same.

The junk psychobabbling of the CDC (the crap) must go; science must be admitted and funded through the NIH, immediately, taking all the latest science into account in order to protect the world’s blood supplies, future generations from disability; and to prevent lack of future tax revenues.

Thank you for today, (which should have been two), on behalf of the three of us living together, (two blood related and one a significant other of 25 years): all with CFS/ME! P.S. thanks, Mary and Erik!

Kathryn Stephens
Mary “Fiba” Arispe
Kathy Lorentz

Saturday, April 24, 2010

#55~ XMRV-Positive Doctor Believes Other Doctors Should Consider Treatment NOW

XMRV-Positive Doctor Believes Other Doctors Should Consider Treatment NOW
XMRV-positive Doctor Begs Us to Fight for WPI

I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease.

I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT.

In that context, I treated patients with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.

When I read the paper in Science about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it.

When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians

It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.

Frankly, I didn’t see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail.

So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day.

It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isn’t happening with respect to figuring out how to help the patients, I don’t think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years.

I don’t think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently.

HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro.

But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.

I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the Science paper.

I would be happy to share with any physician willing to consider treating.

I certainly don’t expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past.

We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. Always treat the causative agent if you can. Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.

In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.

I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong.

But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down…

I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients.

The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let others slay the dragons for us. We have to support them in any way we can. Read: SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD. Please tell everyone you know. Pull out all the stops.

Jamie Deckoff-Jones MD
Santa Fe, NM

I posted the above message from Dr. Jamie Deckoff-Jones with her permission. She wrote, "Please post anywhere you
want with my name."

Friday, April 23, 2010

#54~ My Letter to the CFSAC re: May 10 meeting

Sent to:  (must send by 5pm EDT April 26, 2010)

Letter to CFSAC for the May 10, 2010 meeting:

Dear CFSAC and Wanda,

First I would like to Thank YOU personally for existing (CFSAC)
and Wanda for ALL that you have done to help us ...
it is REALLY appreciated. Words can NOT really express
HOW Grateful we all are  for your work and efforts on our behalf.

AND HOW Special last Oct's meeting was
and SO IMPORTANT to us and brought us all HOPE and
the WILL TO LIVE and sense of COMMUNITY "back to many of us".
...that have been living like a prisoner in the 4 walls of our bedrooms
in solitary confinement. Many of us cried with JOY after
that First we felt we Had Been VALIDATED FINALLY !!!

Many, Many of us were all on Facebook
at the same time watching the webcast and for the folks
that have been made poor by this illness that can only afford dialup
(AND there ARE Many !!! ) we had to attempt to give them
like a sports caster~ a blow by blow accounting of what was
happening and being said..

However, because of the  TERRIBLE QUALITY of "Real Player"
Many of us have started calling it "Real NOT Player"
and we WISH you could use something LIVE like either
USTREAM or VIMEO ~ AND~ eventually contact Google
and GET PERMISSION to upload the "Entire thing"
to "you tube" which is SOOOO much easier to watch
and we can comments on it also... I mean "really"
if the White House has a "youtube site" WHY can't the
HHS give the CFSAC one.? THEY ARE FREE !!!
This IS not only a USA but a WORLD issue and
we have MANY folks trying to watch from
ALL OVER THE WORLD....and for the poor dialup folks
PLEASE see if you can find an "audiocast" that will
work for Dialup... I for one can speak to the issue of HOW
much of a financial drain this illness has had on my life.

I have not written "before" because the PUBLICITY about ME/CFS
is SO POOR I had NOT even HEARD of you and didn't KNOW
about any Support Groups and had been suffering a dwindling life
of this illness for 23 years now... ONLY to learn about 
many places after your webcast last  Oct and the Science
publication of the WPI  XMRV study. ... I find this history
especially disgraceful because I, like many others I am finding out,
WERE Healthcare workers when we got sick and were
treated with the attitude of "Kick them when they are down"
by the hospital's lawyers so I could not even get any disability.

So here I sit 23 yeas later, after working in the hospital for 17 years,
being shunned and stigmatized by ALL of my Friends and Family
because  the HHS has NOT done the appropriate amount of PR
to make the WORLD take this disease SERIOUSLY...
I have no income, no medical insurance, am alone with NO help,
am NOT old enough for Medicare yet, have had to cut back on
OH SO Many things in my life JUST to s-t-r-e-t-c-h- money for the
Basics of FOOD and Utilities and property tax and car insurance and
a HUGE Amount of Supplements that I HOPE are serving to
even keep me from deteriorating more until a cure can be found...

But, until the WPI we had NO HOPE and even SO ~ I REFUSED to Surrender
or get depressed I was simply FRUSTRATED as I had already lived thru the
80's and had 5 close friends  die from AIDS..and I got sick during that period.
Is THIS the kind of treatment that the BEST Country in the  World
should be  providing to their citizens that WANT to work again and Have a life..?

My body maybe sick.. and I am unable to even GO to any "job fairs"
cuz I can ONLY do things from home in bed on my laptop...
when I am NOT asleep from a keeping ANY kind of schedule
is EXTREMELY HARD and for 2 years I ONLY had Dr's appts "By Phone"
and it took much arm twisting to even get those which were eventually
cut off by one of the Dr's....

Many of us "ARE" Slipping thru the cracks and this MUST STOP NOW.

I respectfully request that the CFSAC:

1.~ Meet 4 times a year so we can have more timely info and input allowed
AND that each meeting be 2 days in length to allow adequate time for
Quality Reports from Researchers and public input and feedback.

Waiting 6 months in bed for a one day meeting that cuts public comment time
and does NOT even allow official Updates on previous reports or feedback just does NOT cut it.

2.~ It Must be ACKNOWLEDGED that Many of us DO have PTSD that
"has been caused by the Government's lack of  REQUIRING the
needed Research and PR for us, for it to be taught in Medical schools and
thus NO Dr's know HOW to treat us and ONLY say we are depressed"
..NOT TRUE...not even Close..

Until THEY get this illness...THEN a "Light Bulb" goes on.....

3.~  I respectfully REQUEST THAT We ALL Deserve "IMMEDIATE Health Care"
even for the basics of life and our PTSD.

My last BIG Relapse was caused  by a VERY Painful Medical Procedure
caused last Dec that made me  SCREAM LOUDLY at the time..
That was my First  "in office appt" in over 2 years.. and I get a Relapse from it.. ??
HELP US PLEASE.. Is anybody listening ??? Who is tying your hands ??? 
We are helping everyone "all over the world " but NOT helping our own Citizens ???

Because I and the Dr's didn't know what I had long ago they would NOT write a letter
 for me to get disability and now that it is longer than 10 years since I have worked
they tell me that even IF I get a letter has been TOO Long and I am NOT Eligible for disability.
EXCUSE ME (sarcasm) for "Purposely NOT trying to be a drain on  our society" as
I was raised in a family where we took care of each other and my mother WAS
helping me until she -passed away...10 years ago..
I relapsed again after helping take her and my step-father thru Hospice at home..

Now ~ I am going downhill... " I REALLY need the Help" and
My Government where I was born tells me
I am NOT eligible even if my Dr. says I am Disabled?

For goodness sakes.... I even have a Disabled Parking Placard because
of the Cardiac OI and POTS issues that I am now having..
WHY can my CAR get a "Disabled Placard," BUT I CAN NOT GET Disability ????
Something is VERY WRONG with this picture...
aka Denial by the HHS/NIH/CDC ???
There IS growing public disenchantment with other emerging health concerns
that have been mishandled. That erodes the CDC/NIH's support base.
For the CDC/NIH to turn a blind eye at this retroviral juncture in front of
the public may be the "in" that can knock down their obstructionism.

4.~ I request that replacements for outgoing committee members
be filled in a timely fashion and NOT at last minute....

This type of action gives them NO time to get caught up to date with
not only the history but all that is happening currently...
..and is just plain Disrespectful to THEM and US.
Timing and Actions and Intentions DO count....and will be noted by ALL.

5. ~ I respectfully request that the agendas be posted in a timely fashion
so that the public can  submit testimony with a little more time to

Hello? ..we are SICK and sleeping a LOT, many times
12-18 hours a day and a month FLIES by..literally... paying bills or
walking to the mailbox or kitchen is a HARD CHALLENGE at this point.

6. ~ Please make video live-streaming of the meetings be embedded in the charter along with a dial-up audiocast.

7.~ I ask that the "status" of the CFSAC's recommendations be posted in a timely manner
and let the HHS KNOW that WE WANT to KNOW WHY they have been
ignoring us year after year.? This MUST STOP NOW.

8. ~ I "Sincerely Request"  that comments by the public be allowed to
    remain 5 min segments PERMANENTLY.... 

WE have been Silenced for TOO Long.

9. ~  I also Please am asking that there BE FOLLOW UP about XMRV
by WPI or other Dr's or Researchers that testified at
"ANY immediately Previous meeting" AND on EVERY Research that has been done....

YOU  are the ones WE NEED to HEAR this INFO FROM... PLEASE
HOW can YOU NOT expect US to want to HEAR what is being done???
MANY countries are NOW asking ME/CFS patients NOT to donate blood..
..well then.. that MUST mean that "it is NOT ALL in our head's" is it?

Especially after the stunt and intentional fouling invalidation of the research material
of an XMRV test by the experimental virologist Dr. Frank van Kuppeveld from
UMC St. Radboud and internist doctor Jos van der Meer didn’t find a trace
of XMRV in the frozen blood of 32 Dutch CFS patients, taken in 1991 and 1992.
Also, in the blood of 43 healthy control subjects they didn’t find the retrovirus.
They published their findings online in the British Medical Journal (3), late January.
Annette Whittemore points out that the WPI, at the request of van Kuppeveld, has
tested some blood samples from the Dutch research cohort before the study at
UMC St. Radboud was completed. The WPI found traces of XMRV in those
blood samples. Whittemore claims she possesses over email correspondence,
which proves that van Kuppeveld was informed about these WPI research
results before he published his negative study. However, in his scientific publication,
 no word is spoken about the co-operation with WPI. The redaction at Ortho
has requested a copy of the email correspondence with UMC St. Radboud
from Annette Whittemore, but this request has not (yet) been honoured.
Why did the UMC St. Radboud researchers keep silent about all of this in
and around their research publication in the British Medical Journal?

10. ~ I desperately request that the CFSAC requisition physical therapists that
MUST give the CFSAC a list of exercises that those that are in the early stages
 of being bedbound can DO to PREVENT muscle de-conditioning and
thus experience MORE loss of quality of life and then becoming MORE disabled...
(isometric OR other)  and then Make SURE ALL DR"s HAVE this INFO as
they currently DO NOT and will not even advise if you ask.

If you think they don't know anything about nutrition, wait until you
find out HOW LITTLE they know about conditioning for people
that are chronically ill and bedbound.

11.~  I please also would like to ask for you to allow the public a
chance to respond to ex officio testimony like they used to.

12. ~ Additionally, I would like to request that we have permission to
ask a few questions after each presentation by an ex officio member (such as NIH, CDC, etc.)

13.~  I would also like to respectfully suggest that you also set up a system
for email to notify those that Sign-up to receive notifications of any Updates,
 Info, or  Upcoming meetings...
Hearing about everything 4th party removed~ a week before the event
is NOT proper communication with the citizens that you are set up to serve..
If other blogs and websites can do this ~ so can the CFSAC....
PLEASE come into the 21st Century and KEEP in Touch with us in a timely manner DIRECTLY.

Thanks for listening...and for all you do.... hopefully a lot MORE ASAP ~
If things can NOT "Improve SOON " the Band WILL be playing ON...
and the tune will be a dirge played by the World Court of Public Opinion.


If anyone wants to borrow my points Please do....
but use your OWN Personal Medical history and situation
not mine...OK ;-)

Thursday, April 22, 2010

#53~ 40th Anniv. Earth Day~ Meds for XMRV? studies, World? blood supply

 As we Celebrate the 40th Anniversary of Earth Day I pray that we 
Re-NEW our Care for the Earth herself AND all of her inhabitants...
Not ONLY the humans but also her animals and resources.
We ARE all one huge Eco-system and NEED to pay attention to what
is happening to ALL of us and what we are doing to our bodies and to the Mother Nature. May we please PAY Attention to what Mother Nature is telling us thru Science and how it is effecting not only our atmosphere but how in this new
21st Century whatever is done in one corner of the earth by humans effects
ALL of we can see by the spread also of all of the flus and viruses.
If it takes a Village to raise a child, Let's UNITE and Build this
World Village to Care for the Earth AND Our Health Worldwide..

We ARE indeed a world of dominoes now and in this jet age microbes and
people are traveling faster than ever....  

Please write your Governmental Reps, etc and let them KNOW you CARE
about BOTH of these issues and ARE watching HOPE the act in the 
BEST Interest of ALL of us.. and we ARE paying attention to HOW they respond...Thx. ♥♥♥
There have been some new XMRV studies undergoing in Utah that are progressing well and I know of at least one Positive that has shown up so
Carry ON  Dr. Lucinda Bateman..and Dr. Singh...

There has been some news out lately about some new research into older HIV drugs that appear to work on XMRV.. and the next step is to test this theory in animal research..before any human trial would be available.

Articles are now showing up about the research of older HIV meds being researched as a possible viable use against XMRV.  

PNAS article also

NOW ~ finally there is some talk about them actually paying attention to XMRV and the USA Blood Supply after the Recommendations of the CFSAC meeting Oct 2009.
There is a current article from the WSJ with some info about attention being paid to it. This is just the beginning folks, so we really NEED to write to the HHS and let them KNOW we WANT a standardized test to screen the blood supply. There are WAY too many XAND illnesses that don't show up until years later that we need to PREVENT...

Just like I am SURE Isaac Asimov would have appreciated the Blood Supply being screened for HIV back when he had a transfusion and many years later died because of the AIDS-tainted blood he has been given... He was told for YEARS to keep it QUIET, and then Arthur Ashe came out that he had AIDS and a few others and after Isaac's Dr's "were ALL dead" then his family was given the GREEN light to let the public know... NOT THIS TIME Folks...OK?

Wall Street Journal- Blood Supply Article

The Canadians are NOW asking people with ME/CFS "NOT" to donate to their Blood Supply... so we are spreading the news around... Maybe some ears ARE Opening ???

April 8, 2010: The WPI applauds the Canadian government for their response to the findings of a new human retroviral infection, XMRV, in patients with ME/Chronic Fatigue Syndrome. Due to the serious nature of ME/CFS and the possibility of transmitting XMRV through blood transfusions, we believe that it is prudent to be cautious until the scientific community can conduct the necessary studies to determine the prevalence and risk of XMRV in those individuals with ME/CFS.
Read the story ("Canada bans blood donations from people with chronic fatigue," April 7, 2010) at Canwest News Service.

Well, the Tazmans and Australia are also following in rejecting ME/CFS from donating  Australian and in the Herald Sun in AU.
They are also now rejecting ME/CFS patients from donating blood
in New Zealand .

C.D. form the U.K. suggests:

UK people (and others, actually): please consider emailing NHS Blood and Transplant (NHSBT) at to ask them if they are going to follow the lead of Canada, NZ and Aus in banning pwME from donating blood. You might also mention that the US AABB has banned donations from people who are XMRV positive and that a growing number of UK citizens are testing positive for this virus.

The NHSBT website is here.

And also SaBTO (Advisory Committee on the Safety of Blood, Tissues and Organs) @


Here's also a new video from the U.K. from an enterprising new filmaker
that has put together a well made documentary that says alot in the short
time that have for this clip...

ME Promo from Double D Productions on Vimeo.


Hillary's BACK ~ Yippeeee ~ from Osler's Web with new blogs.
Please Read her latest posted on this page in the Right Section-->

 Carry ON folks and we WILL GET Public Opinion on OUR side...
and THEY will be the ones to HELP US get the Governments off their backside
to protect their own backside...ya know??  
Let's Get the Public of the World involved, OK???
Seriously... they will be a HUGE part of our Help to protect themselves..and thereby help us.
Please make NOTE that I NOW have this blog set to be able to be translated into MANY languages so you may Feel FREE to send it to friends in other countries and then Simply ask them to use the Translate Button up at the Top to help them read the posts... Much Thx  ♥♥♥

Sunday, April 18, 2010

#52~ Will you FIND us in TIME? MAY AWARENESS DAY

We are right in front of you, we even look like you...but you can not SEE us.
We have been here since the mid 1980's when HIV broke out and our friends died.
We have been here watching you ignore us and pretend that we do not exist,
We have been here "Crying Out for HELP" to Deaf Ears.....

Last year something happened tho that maybe made you HEAR our name !
There was a 3rd Retrovirus ever that was discovered to have a link
to what we have been going thu for the last 20+ years in darkness.
ONE Mother and Father could NOT take it any more..

Many of us do not have families left alive and many friends have already passed.
Many of us worked in hospitals helping the sick for MANY Years...
Yet many of us were the ones to get sick also when this illness broke out.
The rest of the world calls it M.E., but the CDC decided to give it a
low class name that eventually was nick-named the "Yuppie Flu"- NOT.

ME/CFS - A condition which can leave people bedbound
and paralized for years on end.
Can you imagine living like this?
We don't have to imagine, Its our reality...

We are STILL Here and We WANT to NOT be ignored any more.
There are now 4 million of us in the USA, 
and probably 10 million Carriers....
It has been estimated that there are 28 Million infected worldwide.
If XMRV IS the Cause.,.. Men BEWARE 
it "can cause" Prostrate Cancer also...

If XMRV is not our Cause then it certainly plays a part
in messing with our neuro immune system and getting them all confused.
What is this illness that YOU, the Public, and until now, YOU the CDC
are doing to the economies and mental health of the families
and care-takers involved in helping us Survive while you
twiddle you thumbs? aka while Rome Burns.. NOTHING.

Many of us do not even have medical coverage and the bills for
the families for Doctors that haven't even been trained to KNOW about
this illness is a flat out SIN and Disgrace. In fact a Prof trying to
teach about our illness in medical schools and on committees
was threatened with dismissal and others already HAVE been.

Sounds like the plan of "See NO Evil, Hear No Evil" is just
helping our neuro immune illness get worse and on top of that
might even be infecting the world's Blood Supply...

In addition to the few videos I have included here for your
education and enlightenment... 
Please take this moment to know that 
May 12th is ME/CFS/FM Worldwide Awareness Day and WEEK.

Please send this post to friends and family that 
you feel would benefit from this education...
and take a minute to download and
put a Blue Ribbon on your avatar (links are on THIS Blog)
or any other thing you wish to help SHOW that YOU
are wanting to Help us Find a CURE 4 ME,
so that Millions MORE don't have to suffers thru this
like we have been for the last 24 years....
maybe even one of your children or grandchildren ?

Thank You and Bless you for reading thru to the End
and I HOPE that you will stand with us to End this illness
that has also been linked with Autism, atypical MS,
endometriosis, Thyroid & Adrenal disease, and possibly
Lymphoma ~ from which my mother passed away.

This illness has been named ME/CFS which does NOT
do the havoc and destruction it wreaks of Injustice.
Thank you for doing your part to Help others "Be AWARE."

The ONLY Research institute in the USA currently 
TOTALLY dedicated to neuro  immune illnesses is the
Whittemore Peterson Institute in Sparks, Nevada.
http://www.wpinstitute  ~ God BLESS Them for Caring !!!

And Bless everyone that CARES about this illness as we 
WANT to be Healthy so we can work and HAVE lives AGAIN....
We may not be "your normal" but whatever can be done
to help us be even a little Better will Help the Economies
of the WORLD, cuz then we can be Functioning Citizens AGAIN
and even Giving BACK, and NOT be in Solitary Confinement
of the 4 walls of our bedroom like those on Death this 21st Century.