#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
  (800-232-4636)
  TTY: (888) 232-6348
  24 Hours/Every Day
• cdcinfo@cdc.gov

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 14^th 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 14^th 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: 
 http://www.cdc.gov/about/organization/mission.htm

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: http://www.cfscentral.com/2010/08/sunday-monroe-5-am-final-final.html
 
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.” 
http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

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,  http://www.cdc.gov/cfs/general/symptoms/index.html 
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: http://www.cdc.gov/cfs/general/diagnosis/testing.html 

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: 
 http://www.cdc.gov/cfs/general/treatment/options.html   
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 14^th 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:  
http://www.cdc.gov/about/leadership/leaders/bell.htm

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: )
http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm  

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.

Conclusion

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:  
http://www.oslersweb.com/the_why___a_speech_in_london_86981.htm

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 :

http://livingwithchronicfatiguesyndrome.wordpress.com/about/

**GO TEAM GO** 

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.

 

#43~ CDC Re: XMRV Inter-Agency Working Group

NEWSFlash...  both Good and Questionable......

The CDC will be part of an interagency working group 
on XMRV, led by Dr. Jerry Holmberg. 
A three-part study will be initiated:

#1) The first part will consist of standardizing and 
validating laboratory methods and reagents for 
XMRV testing. This stage will use samples provided 
by samples collected by Dr. Judy Mikovitz. 
The intention is to create an FDA approved test.

#2) The second part will test a much larger sample 
than the initial study, trying to determine the 
prevalence of XMRV in the general population, 
and the blood supply.

#3) The third part will consist of how XMRV is 
transmitted, how it causes disease, and how it 
affects various subgroups of the population.

Some are "claiming".... but "I'm NOT Convinced yet"

CDC ~  Face saving action:

CDC ME/CFS Group Relieved of XMRV Research

"In a stunning move, responsibility for XMRV research
has been taken away from the ME/CFS working group
within the CDC, and re-assigned to the division of
HIV/AIDS prevention. "

I hate to sound like a downer.... 
but I see a different side to this coin..


"This group will be in charge of replicating findings 
of the Whittemore-Peterson Institute, rather than 
the group under the control of Dr. Reeves. "

  Reeves had ALREADY told us that HIV/AIDS 
was NOT in his CFS working group..
and that HE did NOT work on Viruses... 

Remember all of those long many emails sent
back and forth between him and another about 
WHY he would not come to a conference about 
HHSV or any such thing...?? about a year ago???

"The move is highly significant: it appears that the 
CDC is now acknowledging the serious nature 
of XMRV. "

They are allocating the research of a "retrovirus" 

to the HIV/AIDS section  ----> as it should be.
They are "Simply" researching a virus DUH...

in the the Viral Dept... if they Didn't we would have 
MORE to complain about..and I mean the 
Entire Public..NOT ONLY the ME/CFS folks...

"The forceful demotion of Dr. Reeves is a sign that 
the CDC is in damage control mode." 

They have NOT yet declared that THEY believe 

that XMRV "IS" the Cause of ME/CFS.
This just says to me... that they could also 

be giving Reeves "cover" because

they don't feel that ME/CFS is a virus... get it??? 

It's from Depression.. .Remember? ??

"The HIV/AIDS prevention group in the CDC has 
many capable retrovirologists, who can provide 
years of expertise. This turn of events should lead 
to balanced, common sense research."

I am Hoping that this IS TRUE for XMRV and 
the general Health of ALL of us...
Whether they AGREE with the findings of
WPI.. is yet to be determined...
They de-faced Dr. DeFreitas... 

Will this time be any different??
Be Aware.... VERY aware...study every 
bit of wording.. to NOT read it the way
YOU want it to read..  
Remember they have PAID "PR folks" to 
word things so they will be "spinned" a certain way.

This is the UN-Spin Zone... 

ONLY  in the #3 part at the top would the studying 
of ME/CFS and XMRV come into play and possibly 
interract... THIS tells me that the CDC is studying 
XMRV...NOT that they are studying ANY connection
between XMRV and ME/CFS..... YET>.. like I said...
Maybe in Part #3 IF we stay ON them....
so do NOT Party YET ...Please...

I don't see HOW this YET changes anything 
regarding Reeves or ME/CFS.
It'll take a BETTER argument than this...
PLEASE...Convince me...I "beg" you..... 

BUT....they are supposedly taking action
on "Part of this" ....Do NOT let up the Pressure..
We have Made Great Strides This Year...
Let Us ALL OVER Continue United 
Gentle with ourselves but STRONG against
anyone that tries to perfrom any Cover-up 
OR any more Delays....OK?

**GO TEAM GO** 

#35~ Remembrance + XMRV, WPI, MECFS, Survivors

Wow, I am beginning to catch the feeling
that many others are as Upset as I am
altho I am "trying" to "set my priorities"
for Getting Better FIRST and then we'll
have the energy to focus on Justice LATER.

This week in Canada we have
Remembrance Day
In the USA Wed. is Veteran's Day.
Although we have "not yet" established
a "specific day" to Rememebr ALL of those
Who have fought this Same ME/CFS battle
with us, and "gone" before us, too soon
their time on this earth ended because of
the abuse, & neglect to which we all ALL
been subject. I would like to take this
Remembrance Day Week for us to "Pause"
and Remember THEM at this Important
time in the Historic Time-line of MECFS..
and let their memory serve to buoy us UP
and give us even MORE reason to "carry on"
and help "28 Million Voices 4 a CURE" until
it is "no longer needed." So, in their honor,
I Dedicate this  tune:

For those who have gone before us:

Here is a Memorial list that another
MECFS Advocate has been compiling~

To change to a cheerie topic~
Here are some Recent new TV videos
Nevada Newsmakers videos
be SURE to play BOTH parts, OK?
I KNOW it won't happen tomorrow...
but the news here makes me even a little
more excited than I was yesterday...

Second, here is an article that will
speak to ALL of our souls called
"Where was the CDC?"
The Hilarious part IS that This was written
BEFORE the CFSAC meetings had started.
So they didn't even HEAR how BOTH
the CDC & Reeves got taken out behind
the woodshed and..  *#@%+$#^
as they have been doing to US for the
last 25 years..... Enjoy~ esp if you
have already watched the CFSAC
2 days' worth of testimonies.

I KNOW these NEXT 2 videos WILL BE
HARD to watch, but Please watch them
and as I did, I thought of all of those
other MECFS patients that could NOT take
any more and chose to exit this nightmare..
This person has chosen a "Creative Way"
to express their Pain and for THAT, I say
Congrats and KEEP expressing your pain !!!

In fact, I have a column here on this blog
for those that have MECFS and use ANY
Art Form.. I call it part of Art Therapy
cuz it's also what we "stuff" that kills us..
If you know "anyone" with an Invisible Illness
that blogs about their Creative Art PLEASE
let me know, so I can ADD them and
acknowledge them, OK?

Dead Funny? Xenophobia in MECFS

Part 1: Phone call for Mengele's twin

PLEASE watch all the WAY thru Part 2..
Part 2: Phone call for Mengele's twin

So as painful as it is for ALL of us to
experience THIS, let alone watch these
videos.. PLEASE do watch them and even

log in and give the Creator some STARS

"for the effort and creative way" they chose

to express their pain and let them KNOW'

that they have MANY that feel the pain ALSO

no matter what country we are in...

the TRUTH is the SAME ~ Each country has

it's own version of the Guilty..

We WILL "deal with them"

but, FIRST we need to get well..

then it will be "their turn."

I have been to Poland and the Death Camps
TWICE so I KNOW personally the similarity
of the Guilty. Those that Survived the camps
had ONE thing in common with us..

They "focused" on something Positive.

So make your list of the guilty, save your
copies of the Evidence, but FIRST and 
Foremost ~ DO what you/we need to
GET BETTER.. if they are still alive after
we get well, we can exact OUR Justice.

#32~ Hot Off the Unofficial "CDC Chatter" and MORE

First I thought this was an imposter site and
wasn't gonna pay it any attention cuz the
news sounded "TOO GOOD To BE TRUE".

Now it appears that: this site is
FULL of Great Stuff ♥

The Intro ~

Welcome to CDCChatter.net, 
an unofficial blog for employees of the 
Centers for Disease Control and 
Prevention (CDC), external partners
and others who are interested in CDC.
This blog was established for CDC 
employees and others to post 
information, express opinions, make 
comments and otherwise communicate 
about decisions, changes, events and 
other issues that are occurring at CDC.
This blog is intended to provide a 
forum for people to express their views.
It is not intended as a forum for
disclosing classified or confidential 
information nor is it intended in any 
way to compromise the mission 
and efficacy of CDC. 

with that Said... here are a few gems
from the site ~ so Have fun reading♥

Bad Day for the CDC ♥

Calls for new CFS Leadership at CDC

Good changes or Chaos inside CDC? 

PBJ-Hemispherix responds to FDA

Dr Friedenberg's testimony CFSAC

Just some FUN reading for when
you are bored LOL

*cheers  to all *

Comments & referrals to this blog
are ALWAYS appreciated. 

#20~ Tom Kindlon's PETITION & letter to CFSAC mtg

Please read it and Pass it on to those you feel
would support us and Please ask them to read
it and Sign the Petition.

We would like to get as MANY signature
Before Oct 28th as possible.. Thanks for
your help and please settle in and have a read.

=========================
Don't support the "Reeves empirical definition
criteria for CFS"?
Sign the petition at:

http://CFSdefinitionpetition.notlong.com
=========================

Mr Tom Kindlon  wrote the following

and has given permission for the 

(partial) reprint of his submission to the 

CFSAC upcoming meeting on Oct 29th.

**************************
He set up a petition on the issue on the 

15th of April, 2009.  This petition is 

summarized in 10 words as,
"CDC ~ CFS Research should not 

involve the empirical definition (2005)"

The petition: http://bit.ly/3x7zqK

We call on the Centers for Disease 

Control and Prevention (CDC) to stop
using the "empirical" definition

 [1] (also known as the Reeves 2005 definition) 

to define Chronic Fatigue Syndrome (CFS) 

patients in CFS research.

The definition: http://bit.ly/rfw4i 

The CDC claim it is simply a way of 

operationalizing the Fukuda (1994)
definition[2]. However the prevalence 

rates suggest otherwise: the "empirical" 

definition gives a prevalence rate of 2.54% of 

the adult population[3] compared to 0.235% 

(95% confidence interval, 0.142%-0.327%)
and 0.422% 

(95% confidence interval, 0.29%-0.56%) 

when the Fukuda definition was used in 

previous population studies in the US[4,5].

The definition lacks specificity. 

For example, 

one research study[6] found that 38% 

of those with a diagnosis of a Major 

Depressive Disorder were misclassified 

as having CFS using the empirical

Reeves definition.

References

[1] Reeves WC, Wagner D, Nisenbaum R, 

Jones JF, Gurbaxani B, Solomon L,
Papanicolaou DA, Unger ER, Vernon SD, 

Heim C. Chronic fatigue syndrome--a
clinically empirical approach to its definition 

and study. BMC Med. 2005 Dec
15;3:19. Link:  http://bit.ly/rfw4i
[2] Fukuda K, Straus SE, Hickie I, Sharpe MC,

Dobbins JG, Komaroff A. The chronic fatigue 

syndrome; a comprehensive approach to its 

definition and study. Ann Int Med 1994, 

121:953-959.
[3] Reeves WC, Jones JF, Maloney E, Heim C,

Hoaglin DC, Boneva RS, Morrissey M, Devlin R.

Prevalence of chronic fatigue syndrome in 

metropolitan, urban, and rural Georgia. 

Popul Health Metr. 2007 Jun 8;5:5.
[4] Reyes M, Nisenbaum R, Hoaglin DC, 

Unger ER, Emmons C, Randall B, Stewart JA,

Abbey S, Jones JF, Gantz N, Minden S, 

Reeves WC: Prevalence and incidence of 

chronic fatigue syndrome in Wichita, Kansas. 

Arch Int Med 2003, 163:1530-1536.
[5] Jason LA, Richman JA, Rademaker AW, 

Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S. 

A community-based study of chronic fatigue
syndrome. Arch Intern Med. 1999 Oct 11;159

(18):2129-37.
[6] Jason, LA, Najar N, Porter N, Reh C. 

Evaluating the Centers for Disease
Control's empirical chronic fatigue syndrome 

case definition. Journal of Disability Policy 

Studies 2008, doi:10.1177/1044207308325995.

Further reading: Leonard Jason, Ph.D., 

DePaul University. Problems with the New CDC 

CFS Prevalence Estimates
http://tinyurl.com/2qdgu4 i.e.

--------------------------------------------------------
I'm the first to admit that this isn't 

exactly the "catchiest" petition that
has ever been created.  One might think 

it would be lucky to get a few dozen
responses.

However already, in just over a month, 

1633 people have signed (at the time
of writing).  Many have left comments 

which can be read on the site:
Petition Signatures
[Aside: other people have also left comments

but for some reasons the comments have 

not gone up].

I believe this shows the depth of feeling 

there is on this issue.

As I said in my last submission, if one looks

at the CFSAC function, it is clear that the 

issues relating to the definition are 

fairly central.

I listed numerous problems regarding 

the definition in my submission to the
May 2009 CFSAC meeting
( http://bit.ly/2CZHKF ) so
I'm not going to repeat them now.

I do not believe that Dr Bill Reeves 

adequately dealt with the concerns 

about the Reeves 2005 criteria in the 

last meeting.  He said that the
difference between the prevalence rates they 

found in Georgia (2540 per 100,000) 

compared to previous estimates 

(235 and 422 per 100,000) were down
to two issues:

- the different methodology in the Georgia 

where they brought in people who did not 

complain of fatigue on the telephone screening.

He said that "20-30 percent of people who did

not complain about fatigue endorsed the 

Fukuda criteria."  However, the paper for

which he is the corresponding author actually 

gives a lower figure of 11.5% 

["In other words, 11.5% of subjects with

 CFS would not have been detected in 

previous studies that queried participants

only for fatigue"].  It should also be 

remembered that some of these people 

might not have satisfied the criteria for 

Fukuda as it is normally applied - 

the Reeves criteria make it easier to 

satisfy the criteria.  So the real figure

could well be less than 11.5%.  But even 

if one takes the figure of 11.5%, that 

would only bring the figures of 235 and
422 per 100,000 up to 266 and 479 per

100,000 which are still dwarfed by the
2540 per 100,000 prevalence rate from

 the Reeves criteria (2005).

- The other point he starts talking about

 in this section is criteria regarding major 

depressive disorder so he may have been 

trying to make a point with regard to this. 

Personally I agree with him and see this as an
important area also!  First a quick aside: 

there are various forms of depression 

e.g. dysthymia, atypical depression, etc. 

In the past, apart from bipolar, the main one

excluded was MDDm (melancholic Major 

Depressive Disorder), a severe type of 

depression.  Many people still had depression
but were included as they satisfied the criteria.

With the Reeves (2005) criteria, it says:

"Following recommendations of the
International CFS Study Group, only current 

MDDm was considered exclusionary
for CFS." However, part of the specific 

recommendations of the International
CFS Study Group [1] that 

(Reeves claims his definition is based on) 

was that MDDm had to have been resolved

for more than 5 years:
"The 1994 case definition stated that any

past or current diagnosis of major
depressive disorder with psychotic or 

melancholic features, anorexia nervosa, 

or bulimia permanently excluded a subject

from the classification of CFS ... we now 

recommend that if these conditions have been

resolved for more than 5 years before the

onset of the current chronically fatiguing
illness, they should not be considered 

exclusionary."

It might not be important to point this out

for definitions for some illnesses: however 

if one looks at table 2 of the 2005 paper, 

6 of the 16 who are said to have CFS using 

the "current classification" of CFS, had been
diagnosed with MDDm at a previous 

assessment which suggests it is important
in this context.

Also Leonard Jason published a study which

found that 38% of those who have
Major Depressive Disorder but not CFS would

 satisfy the symptom, fatigue,
etc criteria in the Reeves definition.

Also the Nater et al. (2009) study found 

that 57% had current psychiatric
disorders and 89% had lifetime 

psychiatric disorders, suggesting the
definition is picking up a group with 

a lot of psychopathology.

[Aside: A lot of people have made

suggestions to me speculating why the

CDC broadened the criteria in the way

I have.  I do not know the answer. 

The most plausible theory to me is the 

following: The CDC followed patients in
the community in 1997, 1998, 1999 and 2000. 

Between December 2002 and July
2003, they were brought in for intensive testing.

In total, 227 people were invited in, 

including 70 who had previously been 

diagnosed with CFS.  These people went 

through very expensive testing - 

the whole exercise cost $2m.
However, unfortunately, only 6 out of 

the 70 cases of CFS satisfied the Fukuda

definition when they were brought in.

Also 4 more of the other individuals

also satisfied the definition. 

If one only excludes people who currently 

have Melancholic Major Depressive Disorder 

(MDDm) (which was not the recommendation 

of the International CFS Study group), one

can get the numbers who satisfy the Fukuda

definition up to 16.   

The CDC admit this in their paper 

(Reeves, 2005).  However 10 (or 16 if one 

allows all the MDDm cases) people with CFS

 would not be enough for the CDC to publish CFS
studies with a lot of the data they have. 

For some of the experiments, people would

not have been suitable for one reason or 

another e.g. they were on medication. 

Also, often data is not complete or tests 

become corrupted so a percentage is lost.

For some of the experiments, gender might 

make a difference and one may end up 

excluding the men as there might not be

enough patients.  So 10 or 16 CFS patients

is not enough to publish CFS papers
using this data.  But $2m of the CFS fund

had been spent on this experiment and it 

might look like a waste of taxpayers' money

if papers were not published.   

The CDC had already gotten into

trouble for misusing the CFS budget

in the past.  So the definition of CFS

was expanded so that CFS papers could

be published.  So that's one plausible

theory although one does not need to

accept that to believe that the

empirical definition is flawed].

Even if for some reason, the CFSAC 

do not want to recommend against the
definition, it would be good if you 

pressed the CDC to make clear in each
and every paper they write that they 

use the empirical criteria, that they
were used.  The reference for the 

empirical criteria is often not being put
in the list of references.  I know the 

patients were selected using the
empirical criteria because they are part

of the 2-day Wichita study cohort
or from the Georgia study but most

people reading the papers will not

know this.
--------------------------

2) I think the CDC CFS program should

 have to cut its ties with Peter White,
 according to its own rules regarding

 external reviewers:

At the May 2008 CFSAC meeting, the 

following information was given on the
CDC External Peer Review of CFS Program

http://bit.ly/3y5vqZ <-- hhs.gov pdf

"CDC plans to conduct an external 

peer-review of the CFS program in late
summer/early fall 2008. This review will be

 conducted by a panel composed of
national and international experts that is

 to include representatives from
the Coordinating Center for Infectious 

Diseases Board of Scientific
Counselors and CFSAC. CDC is requesting

 that CFSAC members recommend names
of experts with no conflict of interest

 (direct funding from CDC)"

     and

Dr. Miller:
"The panel will be external experts in the

field who have no conflict of interest-they

are not receiving CDC funding and 

***would not have a direct impact on 

the program in its development in stages

other than the recommendations.***"

One of the external review panel 

(which was small - only 4 people wrote the
report), was Dr Peter White.  At the May 2008

 CFSAC meeting, Dr Bill Reeves
said: "We talk to Dr. White fairly regularly."

It is unclear who nominated Dr. White

 to the panel of external reviewers -
perhaps the CFSAC could ask this.

It was not the CFSAC as the minutes

show. Dr. Reeves talked as if they might

have been suggested Dr. White be

involved because he was an 

"expert on autonomic

 nervous system function." 

(which is a
curious statement to make given 

Dr White is a psychiatrist, whose
PubMed-listed articles do not suggest

 he is an expert in this field).

Anyway, the external review panel made the

 following recommendations:
"The panelists recommend that the CDC

program urgently consider intervention
studies to help to elucidate the direction

 of causality in the several
pathophysiologies identified by the CDC.

 This strategy was not articulated
clearly. For example, since both cognitive 

behavior therapy and graded exercise 

therapies are known to address some of the

abnormalities found, and since both these

therapies have been shown to be efficacious

for CFS, these behavioral interventions should

be seriously considered. Collaborations with
providers and medical schools practised in

randomised controlled trials
might provide the best means to achieve this."

A summary of strategic recommendations
[..]
5. Clinical guidelines on management

 should be developed for use in the USA,
 by the CDC team in collaboration with

 others, and disseminated for CFS.

6. The team needs to consider studies

 that test the direction of causality
 of pathophysiology, such as using

 interventions."

At the May 2009 meeting, 

Dr Reeves said:
 

"Peter White, the psychiatrist that

 we work with at Emory,"

"We are in the process of planning a

 cognitive behavioral therapy (CBT) and
graded exercise (GET) trial as part of the 

provider registry population in Macon. 

We're going to do that in collaboration

with the providers in Macon, with Mercer 

Medical School, *with the U.K. group*,

and with Mayo Clinic."

- "International Workshop - 

Research, Clinical, and Pediatric 

Definitions of CFS - I would like to try to

get together by the winter of 2009. 

I know the IACFS/ME is interested in this.

We want to include countries such as UK

that have CFS care completely integrated

into their healthcare system."

- "Dr. Reeves: An excellent comment.

 Our focus is obviously on the United
States. There are three important 

reasons for international collaboration.
One of them I alluded to. There are 

countries that have put CFS evaluation,
diagnosis, and management into their

national health systems. The UK is one
of those. An international meeting

provides the chance to learn from

another government that has embraced

this illness- perhaps not to the extent

that everybody would like-but is trying

to work with it as a national health
service."

Given that the only representative from the

UK that the CDC has invited to its CFS 

meetings since around 2001/2002 is 

Peter White, it looks very likely that they have

him in mind for both of these workshops.

Also it looks like he is involved in their 

Emory research and may be involved 

in the CBT/GET.
Both for the CDC's reputation and 

Dr White's, it would be better if the CDC
cuts its ties with him given he took 

part in the external peer-review.

3) There is potential that who the 

individuals the CDC invites to its
upcoming workshops may not be 

representative of the spectrum of opinion
amongst experts in the field, based on 

the make up of, for example, some
International CFS Study Groups 

previously.

The CDC are planning to have three 

workshops on CFS (according to their
draft plans):

- International Workshop - 

Clinical Management of CFS

- International Workshop - 

CFS Case Definition

- Workshop International -

 CFS Study Group (Research priorities)

However, it should be remembered that,

for example, what is considered good
management of CFS is a highly disputed

area.  Many professionals believe
that Graded Exercise Therapy (GET) and

Cognitive Behavioural Therapy (CBT)
based on GET 

"are basically all that patients need."  

Symptoms are seen as
largely due to deconditioning and 

maladaptive beliefs and behaviours 

rather than an ongoing disease process. 

I will call these the people of the "CBT
School of Thought."

A few professionals go further and claim that 

GET and CBT based on GET can lead to full 

recovery.  This is a small group but it includes

Peter White (mentioned above) and the 

psychologist, Gijs Bleijenberg PhD from the
Netherlands.  Both of these professionals, 

who many would consider to have
extreme views, have been the sole 

representatives from their countries at
workshops the CDC have organised on the 

illness (see for example
http://www.cdc.gov/cfs/cfsmeetingsHCP.htm ).

The CDC was involved in a paper this 

year, "Are chronic fatigue and chronic
fatigue syndrome valid clinical entities

across countries and healthcare
settings?" by Hickie I, Davenport T, 

Vernon SD, Nisenbaum R, Reeves WC,
Hadzi-Pavlovic D, Lloyd A and International

Chronic Fatigue Syndrome Study
Group (28 collaborators).   

Of the 35 individuals involved, apart 

from the CDC team members, virtually all

could be said to be of the CBT School of
Thought with regard to CFS.

However, a meta-analysis 

(Malouff et al., 2008) found that the 

average Cohen's effect size for Cognitive 

Behavioural Interventions 

(include GET) for CFS was 0.48 

which does not reach the threshold of 0.5 for

something to have a moderate effect! 

Leonard Jason published a large NIH-funded study in
2007 which found that an intervention based 

around encouraging patients to pace activities 

did better than interventions that assessed CBT

or exercise programmes.  Prof. Jason 

subsequently published a paper which found

that within this trial, "Those who were able to

stay within their energy envelope had 

significant improvements in physical 

functioning and fatigue severity."

Is the CDC going to ensure that there

are a reasonable numbers of
individuals at these workshops who 

believe that pacing is a good management
strategy for CFS?  Some/many in the CBT 

School of Thought are against pacing and will 

not recommend it.  Are the CDC going to 

ensure there will be proponents of 

Energy Envelope Theory at these 

workshops?  Also I don't think one person is 

sufficient given group dynamics.

An even more important issue is the high

rate of adverse reactions reported by 

people with CFS who have done exercise

 programmes (and CBT based on
exercise programmes).  Unlike drugs, 

generally there is no easy way for
professionals or individual patients with 

CFS to report adverse reactions to
non-pharmacological interventions 

such as GET.  So formal data is not
systematically collected by statutory 

agencies in countries around the
world.  Surveys on the issue are the 

next best source of information it
would seem.  I sent information on 

10 such surveys to the CDC in my
submission on their draft plans - see
http://tinyurl.com/adversereactionsinCFS

http://bit.ly/1nPXA7

These are surveys from various countries 

(the UK, US, the Netherlands and Norway) 

and show the high rates of adverse reactions

that are reported.  The latest survey was from

the UK, by the ME Association: 

906 replies: 

Made much worse: 33.1% (300 individuals),

Slightly worse: 23.4%, No change: 21.4%.
Improved: 18.7% and Greatly improved: 3.4%.

These represent very high rates
of adverse reactions. 

If a drug made 33.1% "much worse", 

it would probably be taken off the 

market until they worked out if there 

were certain groups of patients for 

whom it was, and was not, appropriate. 

Dosages might be changed.

Some proponents of GET for CFS claim 

that it is simply because the GET was not

done under a suitable professional. 

However,  in the UK, where CFS clinics have

been set up around the country, this was

investigated in a survey by AYME/AfME

(May 2008).

They asked about experiences of GET in the
three previous years.  This was after the 

specialist services had been set up. 

There was no statistical difference between 

the rate of adverse reactions in those who did 

GET under an "NHS specialist" and the people

who did GET under other individuals or by

themselves.

Even if it was the case that GET is only 

unsafe when not done under an
appropriate professional, GET is available

"over the counter" so if guidelines from

 the CDC and others recommend it, 

many patients will try this
treatment.

Many proponents of GET and CBT based 

on GET do not impart information on the
high rates of adverse reactions to either

the patients themselves or even other 

professionals when they are educating 

them about the interventions. Some use 

the "catch phrase" that they are 

"safe and effective."  

The CFSAC should "insist" that any 

guidelines should give information on 

adverse reactions either with specific 

information or simply generally points 

about the high rates of adverse reactions

that have been reported.

Perhaps the CFSAC 

(and indeed other groups) could have 

a role in recommending names for these 

workshops to ensure these workshops 

are balanced e.g. the CFSAC get to 

recommend 25% of the groups, 

the IACFS/ME another 25%, 

a patient group such as the CAA 10% 

and the CDC 40%. 

(Groups could give alternates if some 

of their picks were already used).

Suggestions for professionals from the 

UK who I would think would give
balance to any workshops are: 

(i) Charles Shepherd MD ; (ii) Ellen Goudsmit
C.Psychol. PhD FBPsS (Health Psychologist 

and Visiting Research Fellow,
University of East London) ; 

(iii) Abhijit Chaudhuri DM MD PhD FACP FRCP 

(a consultant neurologist) ; 

(iv) Neil Abbot MSc PhD (Operations Director, 

ME Research UK)  and (v) William Weir MD 

(an infectious disease consultant who
ran an NHS clinic for ME for a 

number of years)