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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

Tuesday, September 28, 2010

#85~ CFSAC (Draft) Meeting Agenda Oct. 13/14, 2010

Remember ~ Day 1 is Science Day.....
This would be for Day 2 + 3 with the Public Comments.
BE SURE TO WATCH Please........................

Funny~ I don't SEE a part where they discuss the Actions taken on 
their Recommendations from the Last meeting......  Do YOU???

Please comment and let me know if I am going BLIND ???

Agenda -- CFSAC Fall 2010 Meeting (Draft)

Chronic Fatigue Syndrome Advisory Committee
US Department of Health and Human Services
Agenda -- CFSAC Fall 2010 Meeting
October 13, 2010
9:00 amCall to Order
Opening Remarks

Roll Call, Housekeeping
Dr. Christopher Snell
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official
9:15 amCognitive Functioning in CFS
Dr. Gudrun Lange                        
10:15pmCommittee DiscussionCommittee Members
10:45 amPublic Comment
11:45 amSubcommittee Lunch
Subcommittee Members
1:00 pmPhysical Therapy
Vocational Therapy
Ted Becker and Kathy Reid
2:15 pmSSA presentation on Improving Disability Assessment Process
(data, training process for adjudicators, success rate)
SSA Representative
2:45 pmDOL/ERISA presentation
DOL Representative
3:15 pmHealth Care Reform—Impact on Persons with CFS
HHS OHR Representative
3:45 pmCommittee Discussion
Committee Members
4:15 pmPublic Comment
5:15 pmAdjourn                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

9:00 amCall to Order
Opening Remarks

Roll Call, Housekeeping
Dr. Christopher Snell
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official
9:15 amScience Day—Key Points and DiscussionCommittee Members
10:15 amExtramural CFS Research at NIHProgram Officials from Trans-NIH Working Group
11:15 amAgency Progress on RecommendationsEx Officio Agency Representatives
12:00 pmSubcommittee Lunch
Subcommittee Members
1:00 pmPublic Comment
2:00 pmCommittee Discussion:  Finalize Recommendations
Committee Members
4:30 pmAdjourn

Tuesday, September 21, 2010

#84~ The CDC Responds~ w/Poppycock

I was recently in contact with the author of the following blog post and was SO Impressed that I asked his permission to re-post it on my blog so he could get wider reading audience.. He deserves it.. 

AND This post "shows" just HOW Important it IS for us, NO MATTER "where you are in the world" to PLEASE WRITE to the CDC so we can "Get them ON the Record" with their replies... 

...after the last 25 years of INTENTIONAL Neglect, Crimes against Our Humanity, and AGAINST THEIR OWN CITIZENS~ let alone the world....and this NOW is the Perfect time... just before the CFSAC meetings where they KNOW they will be called on the carpet because of their last paper that caused all of the controversy... and WHY they could not find a Retrovirus by ANY Name when 6 other Reputable and mostly Governmental agencies WERE ABLE to....

So PLEASE watch this video if you did NOT the first time around and
then READ this incredulous Reply from the CDC and what this persistent Patient from Hello ~ Australia was able to obtain from them...

WE NEED to get the CDC to reply to a FLOOD of Letters from us, OK?
.....and Please KEEP a copy of ALL of your Letters...OK?

Per their website~
Contact Us:
  • Centers for Disease Control and Prevention
    1600 Clifton Rd
    Atlanta, GA 30333
  • 800-CDC-INFO
    TTY: (888) 232-6348
    24 Hours/Every Day
If a young patient from Australia can write such a detailed coherent email questioning the CDC, what are the USA citizens doing ??? BRAVO to this ME/CFS patient from down under~ I Salute him for his clear headed day and his well made use of it..

May *MANY Americans* actually PLEASE USE their Constitutional Right of FREE Speech to also write to the CDC and question the pablum they are trying to spoon feed us with and question their participation in this 
Crime against Humanity since THEY ALONE gave us this stigma, ill-defined name of CFS that they NEVER intended doing any REAL HONEST Research into...
Thus causing 25+ years and now 17 million Worldwide to be suffering with...including their families and all of the costs and income and taxes to every countries economy LOST....

PLEASE Write your Letters...... If YOU don't Value YOU~ who should ???
Dictate it if you must to someone that can take your dictation.. but  just
like Nike Says.... "Just Do It."

CFS Patients Address the CDC:

On the 14th of August, 2010, I emailed:
  • The Director of the CDC, Dr Thomas Frieden.
  • The Director of the CDC’s Coordinating Center for Infectious Disease, Dr Mitchell Cohen.
  • The Director of the CDC’s Office of Public Health Preparedness and Response, Dr Ali Kahn.
After not receiving a reply from any of the above CDC officials, I emailed them all again on two separate occasions (I’d be surprised if they haven’t blocked my email address by now!) On the 14th of September 2010, I finally received a reply from Dr Beth Bell, who my email must have been forwarded to.

The CDC Mission Statement
The purpose of my email was to highlight the breaches of the CDC’s own mission statement, vision, core values and pledge by the CFS department of the CDC that have occurred over the past few months.

The CDC mission statement says:
“Collaborating 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.
CDC seeks to accomplish its mission by working with partners throughout the nation and the world to
  • monitor health,
  • detect and investigate health problems,
  • conduct research to enhance prevention,
  • develop and advocate sound public health policies,
  • implement prevention strategies,
  • promote healthy behaviors,
  • foster safe and healthful environments,
  • provide leadership and training.
Those functions are the backbone of CDC′s mission. Each of CDC′s component organizations undertakes these activities in conducting its specific programs. The steps needed to accomplish this mission are also based on scientific excellence, requiring well-trained public health practitioners and leaders dedicated to high standards of quality and ethical practice.” 

The CDC core values are:

Accountability ~ As diligent stewards of public trust and public funds, we act decisively and compassionately in service to the people’s health. We ensure that our research and our services are based on sound science and meet real public needs to achieve our public health goals. 

Respect ~ We respect and understand our interdependence with all people, both inside the agency and throughout the world, treating them and their contributions with dignity and valuing individual and cultural diversity. We are committed to achieving a diverse workforce at all levels of the organization. 

Integrity ~ We are honest and ethical in all we do. We will do what we say. We prize scientific integrity and professional excellence.”

Finally, the CDC pledge to the American people is:
  • “To be a diligent steward of the funds entrusted to it.
  • To provide an environment for intellectual and personal growth and integrity.
  • To base all public health decisions on the highest quality scientific data, openly and objectively derived.
  • To place the benefits to society above the benefits to the institution.
  • To treat all persons with dignity, honesty, and respect.”

The Vision, Mission, Core Values and Pledge of the CDC (quoted above) can be found on the CDC’s website here:

The email that I sent was almost 6000 words long, hence I will 
not post it here but rather provide a summary.
Each of the points that I raised in my email related back to a specific breach that the CFS department had committed, violating the CDC’s own Vision, Mission, Core Values or Pledge.

The first point I raised referred to the interview that Dr. Steve Monroe, (the head of the CDC’s division of High Consequence Pathogens and Pathology) had with Mindy from CFS Central. This interview can be found here:
I argued that Dr Monroe’s answers were more akin to that of a politician than a scientist. I also claimed that Dr Monroe used many rhetorical devices in his interview that should not be the business of science. I concluded, citing examples, that Dr Monroe breached the CDC’s mission statement, accountability, respect, integrity and pledge.

The next issue that I raised involved the CDC’s failure to detect XMRV in any of the WPI’s 20 already predetermined positive XMRV samples. Also the CDC’s failure to declare this lack of detection ability in the Switzer et al paper. I also emphasized that the CDC’s XMRV study was flawed, providing reasons and science behind this accusation.  I subsequently quoted this portion of the Switzer et al. paper, “The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS.” I argued that by Switzer et al. stipulating that neurological symptoms were exclusionary criteria for their study, it was already predetermined that they would fail to detect the possible neuro-immune disease- XMRV. I concluded that the Switzer et al. study breached the CDC’s mission statement, integrity and pledge.

The next point that I raised pertained to the CDC’s contradictory stance on ME, in terms of definition. The CDC website states that “The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”

Recently, CDC-INFO has responded to emails that have questioned the difference between CFS and ME. CDC-INFO has answered the questions by stating:
“Myalgic encephalomyelitis is a synonym for chronic fatigue syndrome (CFS) that is commonly used in the United Kingdom and Canada.” I argued that this is a case of an explicit contradiction. The CDC claiming at the same time that ME is both 100% the same and 100% different as CFS. I concluded that the CDC breached their own mission statement, integrity and pledge.

The next point I raised involved my unanswered emails from several months ago to Dr. Unger and Dr. Reeves of the CDC. In these emails I asked them whether they considered Canadian Consensus Criteria CFS to be a distinct entity to CDC defined CFS. This is a very important question that needs answering as millions of people worldwide have 

CCC CFS. Knowing whether the CDC considers CCC CFS as a distinct illness from Fukuda defined CFS influences treatments. Dr. Reeves 
and Dr. Unger both ignored my email and even failed to pass it on to another CDC staff member to answer. Although returning emails isn’t compulsory, Dr. Unger and Dr. Reeves have deprived people of knowing what illness they have.

I also suggested that I shouldn’t need to email the CDC to find out this information, it should instead appear on their website.

After highlighting these breaches, I began to question some of the material that appears on the CFS section of the CDC’s website.

I questioned the listing of only 15 CFS symptoms on the CDC’s website, 
I presented a deduction argument that concluded that
“The CDC lacks a fundamental understand of CFS and the various symptoms that the illness can produce.” I concluded that the CDC breached its own mission statement, core values and pledge.

The next query I raised referred to the “Causes” section of the CDC website. This section of their website states that “While a single cause for CFS may yet be identified, another possibility is that CFS represents a common endpoint of disease resulting from multiple causes.” I argued that it was more likely that if there are a number of distinct etiologies to CFS then CFS is most likely a number of distinct illnesses not a single illness. I also quoted several journal articles that supported my conclusion that the Fukuda et al. criteria is not solely adequate. 

I concluded that the CDC has breached its own mission statement 
and pledge.

The next criticism I made was in regards to the CDC webpage 

detailing the Diagnostic Tests for CFS, this page is found here: 
This page claims that “A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS.” (The names of some of these tests are then listed.) 
I cited several journal articles and argued that a natural killer cell cytotoxicity test was a good indicator of CFS status. I also argued that the SPECT scan does have a value in helping confirm a symptomatic diagnosis of CFS.

I also questioned this statement on the CDC’s Diagnostic Tests page that “These tests should not be performed unless required for diagnosis of a suspected exclusionary condition.” I argued that the CDC’s webpage doesn’t stipulate what diagnosis, Z-test positive patients have. I used a deductive argument to conclude that those patients with abnormal test results (from one of the listed tests) either have a different illness to CFS or the person has CFS and the abnormal test result is a consequence of their CFS. Both of these conclusions are the only logical outcomes however are in contradiction to the CDC’s statement that “A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS.” I concluded that the CDC breached their own mission statement based on this website content.

The next query that I had involved the treatment section of the CDC website, this page can be found here:   
I argued that after the CDC’s comment on the unknown etiology of CFS and even after the CDC website conceding that CFS may have a variety of etiologies the CDC shouldn’t be recommending specific blanket treatments to all patients. I also argued that the CDC’s CFS treatment list contained many treatments that were potentially harmful to 
CCC CFS patients.

I also questioned the CDC’s CFS treatment page giving the general recommendation of antidepressants (without any conditions, criteria or stipulations) despite a different section of the CDC’s CFS website stating “Treat clinical depression only. People with CFS may show signs of depression, but not have depression. Prescribing drugs for depression when a person is not depressed may make symptoms worse. Use caution in prescribing/taking antidepressants. Some antidepressants may make individual CFS symptoms worse or cause side effects.” I concluded that this contradiction breaches the CDC’s mission statement, core values and pledge.

These criticisms of the CDC’s CFS department over the past several months each violated part of the CDC’s own mission statement, vision, core values or pledge. In this article I have compacted what my email contained, however the real, longer email explained in detail how each of the aforementioned CDC actions specifically breached part of their own mission statement, vision, core values or pledge.

The CDC Responds
Dr Beth Bell responded to my email on the 14th of September 2010, 
1 month and 9 emails after I originally contacted the CDC with my criticisms. Dr Bell is the Director of the CDC’s National Center for Emerging and Zoonotic Infectious Diseases. 
A brief summary of Dr Bell’s career can be found here:

This is the email Dr Bell sent to me as a response to my email:
“Thank you for your emails to Drs. Frieden and Khan regarding your concerns about the chronic fatigue syndrome (CFS) research program at the Centers for Disease Control and Prevention (CDC).  Your email was forwarded to me for response.  The detailed nature of your critique clearly indicates the depth of your concern about CFS and CDC’s efforts to address this illness.  As director of the National Center for Emerging and Zoonotic Infectious Diseases, I can assure you that CDC takes the problem of CFS very seriously.  I am concerned about your struggles and those of the estimated 1-4 million Americans who suffer with this unexplained illness.  Below I have responded to what I believe are your biggest concerns, but my staff and I have considered carefully all of the material you provided..

CFS is a complex medical and public health concern that poses many unique challenges.  Because CFS is clinically heterogeneous and comprised of various subtypes, it is essential that treatable causes of the illness are identified to improve clinical management.  The CDC CFS research works to reduce morbidity associated with CFS as defined by the 1994 case definition internationally accepted by the scientific community.  Until the cause or causes of CFS are identified and definitive diagnostic tests are developed, the diagnosis will be dependent on careful and on-going clinical evaluation.  

CDC recently launched its new CFS website and we will continue to update its content to improve communication relating to the diagnosis and clinical management of CFS.  CDC’s website correctly states that myalgic encephalomyelitis (ME) was defined in the 1950s as being distinct from CFS, while recognizing that there is not a current consensus case definition for ME.  The CDC-INFO response also correctly states that these terms are used interchangeably in the United Kingdom as well as by some in the United States. 

With respect to the recent studies on xenotropic murine leukemia virus-related virus (XMRV) and CFS, let me assure you that CDC is working closely with the Department of Health and Human Services, the Food and Drug Administration, 
the National Institutes of Medicine, and others to better understand the differing results. The different findings could be related to a variety of factors (for example, differences in study populations), and underscore the need for additional studies and standardized methods. 

I have the utmost confidence in both the integrity and capability of CDC staff engaged in CFS research program activities and the dedicated stewardship of CDC scientists. We believe that careful scientific inquiry is the only way to advance this work and to find answers that may improve the lives of those suffering with CFS.  We share your desire to better define and understand this highly complex illness.
Sincerely, Beth P. Bell, MD, MPH”

 My Thoughts on the CDC’s Response

I detailed 8 specific and distinct criticisms that I wanted addressed by the CDC. In the response that I received, only two of these criticisms are answered.

The first of these encompasses the ME definition issue. Dr Bell has only requoted what I sent to the CDC concerning the CDC website definition and CDC-INFO response. She claims that  “CDC’s website correctly states that…. there is not a current consensus case definition for ME.” 
This contrasts what the CDC website actually says, which is “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” Before my email, the CDC created a contradiction concerning whether ME was distinct from CFS. This contradiction hasn’t been clarified by Dr Bell, instead she has created a second contradiction. Now the CDC deems that “there is not a current consensus case definition for ME” and “ME…has a case definition.” Now there are two contradictions to contend with!

The second part of my email that Dr Bell responded to concerns the Switzer et al. study. She states that “The different findings could be related to a variety of factors (for example, differences in study populations), and underscore the need for additional studies and standardized methods.” I explained quite clearly why the CDC failed to detect XMRV and she has not addressed any of my criticisms of the Switzer et al study. Her response is word for word identical to the answer that the FDA provide in their Q and A on MLV and CFS. The FDA states that “These different findings could be caused by a variety of factors (for example, difference in study populations), and underscore the need for additional studies and standardized methods.” This quote can be found here (under question #6: )  
Dr. Bell has merely copied and pasted the FDA’s conclusion and not addressed my criticisms at all.

Dr Bell has only addressed two out of the eight points that I raised regarding the CDC’s actions of recent months. Despite this she claims,

“I have responded to what I believe are your biggest concerns.” 
 In the first of her answers she has created a second contradiction and failed to resolve the first contradiction that I presented. In the second issue that she addressed, she has merely copied and pasted verbatim, a default answer from the FDA that doesn’t concern the issue I was raising. She has provided two dubious “answers” and has avoided answering the other 6 issues that I raised. Perhaps the most obvious aspect of Dr Bell’s email is the failure to address the purpose and underlying conclusion of my email- the CFS department violation of the CDC’s own mission statement, vision, core values and pledge.

The CDC should be held accountable for breaching their own mission statement. If no deterrents or consequences arise as a result of the
CDC violating their mission statement, then the mission statement can be considered token and worthless. This raises further issues that compromise the very nature and purpose of the CDC as a government organization.


The CFS department of the CDC’s actions over the past several months are insignificant compared to their actions over the past few decades. This is most articulately described in Hillary Johnson’s speech “The Why” found here:

I’d like to finish with some dialogue from Catch 22 that has proven to be prophetic. Due to the CDC neglecting CFS research, the MLV related virus that has been implicated in CFS, has become a real threat to the worldwide, healthy population.

“They’re trying to kill me,” Yossarian told him calmly.
"No one’s trying to kill you,” Clevinger cried.
"Then why are they shooting at me?” Yossarian asked.
"They’re shooting at everyone,” Clevinger answered.
“They’re trying to kill everyone.”
”And what difference does that make?”
Thank You cfssufferer for letting me share this with the many that 
read this blog... it is my dearest wish that many of them will be indeed
"moved into action" and write to the CDC and Keep a copy of their 
letter for Documentation and notify us of their reply or non-reply !!

Here is cfssufferer's blogsite :


all comments and notices of the replies you get from the CDC are VERY welcomed indeed...  Please pass this on to other patients that you know might benefit from reading this CDC reply also.. Thank You.