#29~ "Did you FEEL the Luv Today?

I WAS going to be one of the first to add
all of the links here from all of the Wonderful
Fellow ME/CFS folks that videod the webcast
and have put most of today's up on
youtube already, but after 2nd thought
I have been SO MOVED by what I Personally
Experienced today that I wanted to post
about the "Experience of Today."

After 22yrs of neglect by the medical profession,
disbelief by friends & family, yada, yada, yaga..
I have to say that unequivocally TODAY was
one of the BEST days I have Experienced
in MANY years.. and with strangers from 
Around the World together in Unison.

While 400 of us were watching the webcast
many of us were also on Facebook and using
it as almost a chat, quipping in like a sports-
casters with play by play commentary for
those that only had dialup or could not get
access to the stupid "Real (NOT) PLayer"
that they used to broadcast it....
I mean honestly, I have seen BETTER
broadcasts from USTREAM. The quality
and connections today were Terrible.

That aside... it was The Single MOST
Emotionally Touching Day and SO many of
us experienced this event "jointly",
chatting as we went and shared the
experience and our feelings, for better
or worse, and even shared our Cries of Joy
and our Tears of Pain at those that
STILL do NOT "Get it."

I do want to mention something that
may sound corny.. I don't care.. becuz
it was REAL and palpable today...
Because of the availability of this
invention called the internet...
SO many of us that were "Joined in Unison"
today witnessing this CFSAC meeting and
hearing all of the testimonies and the
Public comment sections and the
(to coin some one else's phrase ;-)
*you know who you are* ;-)
The Vommittee's discussions...

All the while WE were having an
experience that we have NOT had in
the over 20 yrs that many of us have had this
PofC Disease... We literally had a what I
could relate to back in the 60's, but here
as the internet version of a
"World United Group Love-in"
Totally FILLED me over the brim with
GOOD emotions and Gratitude for all
of my fellow Survivors out there..
It was and IS..so Great to meet you..
and BREAK this fricken ISOLATION
we have been jailed in for SO long..

Later, I spontaneously in my head heard
myself singing this tune....as WE have been
Warriors, finally feeling Support from each
other today, from literally around the world,
and I have not felt anything similar since
the 60's... so with that I will leave you
with my heart-felt feelings tonight...
NO matter what tomorrow brings...
I want to revel in tonight's Bliss
from OUR victory of Unity and Support
& sharing that we experienced today..
I know many of you felt it also....
We will always have many days to deal with
the technical aspects of the speeches and
nit pic what needs to be done yet, but these
TRUE Moments of Heart-felt connection
come so Rarely... I wanted to Honor it
FULLY and Give it it's due.
It felt SO fricken GREAT I slept like a baby
and had a 3 hr Power nap even after having
been UP - all night before the meeting
in anticipation, so my butt was dragging
but I only needed a 3 hr nap and woke up
filled even MORE with this song that
Truly almost every word depicts how 
I feel tonight...
TOTALLY Blessed and Grateful
no Matter what tomorrow brings..

I hope many of you also basked in the
feelings I did tonight... is this like a
"Runner's HIGH?" or just a
WPIgasm?



*hugs* to all who were there today...
and to all the new members of our
"Chosen Family."

#28~ a little new Paradigm history before the days of XMRV

For those that have NO understanding of
what ME/CFS is and want to gain a little
knowledge of some of the technical lingo
of what we deal with, and some of the
symptoms, and some of the theories....
I thought I would present for you some
of the info we have been working with
until now...Many of us have these
symptoms and YES as he says....
This disease IS Progressive...
REPEAT That Please....
This disease IS Progressive...
NO ONE seems to understand that yet.



Before we listen to the CFSAC meeting
in about  6 hours, and what Dr Peterson
has to say.. which I am most excited to hear....
It will still be "just a  part" of what we need
to work on to CURE us of all of these symptoms
and damage for those of us that have had
this for 20+ years...

Many of us that have NOT stayed Horizintal
as Dr Cheney advised, already have some
organ damage. Time will only tell HOW MANY
different forms of therapy/meds/treatments
we will need if we are to Actually be cured.

My gut tells me that with SO many viruses
of all kinds... average and retro attacking us
that we will need to kill some of them first
and then maybe follow up with some sort
of stem cell treatments to make things
"whole & well" again... Some Dr's are
"already" using this approach....
ALL of this, of course is "Experimental"
and won't be covered by ANY type of
Medical Coverage.. if you find one that
DOES, Please let us know ASAP, OK?

So until Friday, keep those computers
tuned in and turned ON to the CFSAC 
meeting so that our numbers can be 
counted.. OK?

If you don't think that we NEED our Voices
to be LOUD, United & HEARD, please read 
the lastest post by Cort (with addendum)
in
Bringing in the Heat:
1)  Teflon Woman
2)  The Alpha Dog

Thanks Cort for your ALWAYS Informative
and Educational posts...
I have him in the list to the Right -->

So stay CALM the next 2 days, take notes
and get ready to post & blog on Friday..

OH, last minute news...
Dr Judy Mikovits just spoke on Wed. 10/28
at the University of the Pacific (Stockton, CA)
*possible film soon*
and on Thurs she will be at the
University of Florida, so more news
will be coming from those locations
also I hope..

OK sleep hard & quick...
CFSAC starts in less than 6 hours..
Nite-all ;-)

#27~ XMRV Interim Guidelines from the NCI

Interim XMRV Guidelines from 
National Cancer Institute


Following the Oct. 8 publication by
Lombardi et al in Science linking CFS 
and xenotropic murine retrovirus (XMRV),
the CFIDS Association of America 
requested guidance from the National
Cancer Institute about XMRV for persons
diagnosed with CFS, their loved ones
and the general public. 

The following are interim guidelines
excerpted from a letter received from 
NCI director 
Dr. John E. Niederhuber.


Interim XMRV Guidelines from 
National Cancer Institute


We at the National Cancer Institute
(NCI) have great interest in these initial 
research findings. At present, we agree 
that a critical issue to be addressed is 
whether the exciting recent results 
obtained using samples from the Nevada
cohort can be reproduced in additional
cohorts of CFS-afflicted individuals.

The NCI is striving to develop tools so 
that the general prevalence of XMRV in 
the population can be ascertained, and
the association of  XMRV with disease
can be examined.


In the meantime, it is very important to 
reiterate what we do not know at this 
point, specifically:


1. We do not know whether XMRV is a 
causative agent for CFS, prostate cancer, 
or any other disease. Even if a causal 
association can be established, it may be
only one of many causes, and there may 
be other factors, genetic or 
environmental, that determine the 
outcome of infection. At the moment, 
there is no evidence of CFS
transmission between family members, 
even though XMRV appears to be an 
infectious agent. Thus, it is unclear 
whether XMRV alone underlies CFS.


2. We do not know how XMRV is 
transmitted from individual to individual. 
Recent suggestions of sexual or salivary 
transmission are not based on direct 
evidence, and conclusions regarding 
transmission are not credible at this 
point. Given the frequent isolation of 
virus from white blood cells, 
blood-borne transmission is a real 
possibility, and, while we are not in a 
position to establish firm guidelines, 
prudence would dictate that potentially
infected individuals refrain from
blood donation at this time.


3. We do not know how many apparently
healthy individuals are infected, and 
what the distribution of infection is 
within the U.S. and
in the worldwide population. 

The National Cancer Institute is involved in
coordinating a global effort to study 
these issues.


It is very important to keep in mind that
there is no evidence for a new increasing
or  spreading XMRV infection. 

Further, no credible evidence exists for 
direct transmission of either CFS 
or prostate cancer.


John E. Niederhuber, M.D.
Director, National Cancer Institute
National Institutes of Health
U.S. Department of Health and 
Human Services
October 23, 2009




Note: According to Dr. Wanda Jones 
of DHHS, these issues will be discussed 
by representatives from DHHS, NIH and 
other federal health agencies at the 
upcoming  federal CFS Advisory 
Committee meeting
on Oct. 29-30, in Wash DC.


THAT's the meeting BELOW  I have been
asking your to turn your computers ON
to watch or at least RUN and then watch
the arcived reply later..but we need the 
"head count" by the NIH.....Thx

#26~ THIS Thurs & Fri-Watch CFSAC meeting LIVE if you can

PLEASE Spread This Info FAR & Wide
Around the world... OK?

to get as many people as you can~
to get those computers online watching.
..and to HEAR what Dr. Peterson,
(he is alotted ONE HOUR) 
Dr Bell (alotted 30 mins)
and the CFIDS Assoc has to say during
their 5 min segment during the
"Public Comment" segment....

BLOWS my mind that CAA only is
relegated to a 5 mins of the Public
Comment section, as THEY are
supposed to be OUR Voice...
They sure have alot of clout, huh? NOT

OUR computers turned ON and tuned IN
will SPEAK a LOT LOUDER to the NIH..
So PLEASE turn every computer on 
that you can...OK?

Please watch if you CAN or even replay after
I will add the link for a time zone convertor
down below for your reference.

For those who won't be attending the
CFSAC meeting, be sure to tune in to
the LIVE webcast of the CFSAC meeting
on October 29th and 30th at the following
links:

The schedule for the 2 day event is
located here: THIS Thursday & Friday

2 day Event Schedule

Day 1
*Day 1 LIVE online webcast*

Day 2
*Day 2 LIVE online webcast*

*The number of computers "logging on" 
and watching will be counted by the NIH. 

Let's make those figures 

count for something!*

For those who can't watch live,
archived videos will be available at:

Past Events

The meeting is taking place in
Washington D.C. so that is EDT
if you are in the USA.
If you are elsewhere around the
world we will NOT be changing back
from Daylight Saving Time this year
until Nov 1st, so Wash DC will still be
- 4hr GMT, so you can calculate
from there...

Time & Day World Clock

PLEASE Help us Blow their viewer
Numbers OFF the charts 
THIS year, OK?

Just so you Understand.....
This is a committee that is a Branch
of the USA Gov.~Heath & Human Services
Dept so this is REALLY Important to US
to get their ATTENTION... capiche?

If we can get on the Radar of  

HHS Secretary Kathleen Sebelius

that would be a "real coup."

The "squeaky wheel" gets the grease..
Help us show them we NEED the Grease
THIS YEAR like NEVER Before...
Let's as they say...
"Strike while the iron is HOT."
If not NOW ~ WHEN ???

We've been HERE since before AIDS and
we'll be HERE after the Swine Flu...
Let's USE the Internet and 
show the Power of a Cause 
whose Time HAS Come.

28 million Voices will 

NOT be Silent Anymore.

Thanks for tuning in and Turning ON ;-)
Stay UNITED and 
Let's TURN the Volume UP.

GO Team~ XAND ?
accepting slogans now ;-)

#25~ Located another NPR interview obout XMRV

 October 16, 2009
IRA FLATOW, host:

 
This interview was conducted on the
"Friday Science Show" as part of NPR,
with Dr John Coffin of Tufts University.
I had heard something was going to be
broadcast but didn't know when..
and just located it.

As they allow it to be "embedded"
I thought I would share it with you,
and also give the link for those with
dialup that wanted to read the Text
of the interview or listen to it directly there.

for those with dialup:
NPR ~Science Friday ~Interview

Audio: [10 min 33 sec]

/>

#24~ 3Cheers to Hillary Johnson of Osler's Web- OpEd

A Case of Chronic Denial
 
Op-Ed Contributor:  By HILLARY JOHNSON

Published: October 20, 2009

For the FULL Article PLEASE go to the
TNYTimes and read it..OK?

I have placed the Link Below the

brief excerpts..... OK?

Here are a few teasers to get you there ;-)

"EARLIER this month,......"

"That would have been news enough, .......
.........

"The illness became famous after an outbreak
in 1984 around Lake Tahoe, in Nevada........."

"When, by 1987, ...................
.........................................the health 
agency orchestrated a jocular

referendum.....................
....................................  as 
one of the academics "joked."

"As public health officials focused on
................... then as many as 10 million

Americans may carry the retrovirus."

"She has also given the disease a properly

scientific new name..............

"For patients who have been ..............
................................................................

about their illness for 25 years,............."

Hillary Johnson is the author of “Osler’s Web:

Inside the Labyrinth of the Chronic Fatigue 

Syndrome Epidemic.”

A version of this article appeared in print

on October 21, 2009, on page A31 of the
©New York Times edition.

PLEASE GO to the link below to read the

complete article.

Trust me it is Worth Reading.

TNYT article

Hillary asks that we all follow the link to the 
TNYT website, so they see on their page-counters
that the article generated a lot of interest, and
then e-mail it to a friend, to show them
how interesting we found it.

We have been rating well tonight
as the 3nd most emailed article on
the TNYT tracking system...
So Please email this article to your
Family & Friends.. it will help us get 
Better future coverage by the TNYT.

Thanks and GO TEAM GO.

 

#23~ BRAVO to Dr.David Bell on XMRV

Dr. David Bell on XMRV Research: 

"Now We Can 

Get Down to Business"

by David S Bell, MD, FAAP
October 21, 2009

This information is reproduced with kind

permission from the October 2009 issue of

Dr. Bell’s free Lyndonville News e-newsletter.

It was published shortly after research linking

the “XMRV” retrovirus and ME/CFS went live

in the journal Science on October 8.
______________________
Holy smokes! 

Just when I want to retire

this comes along. How am I going to 

get any peace and quiet?

Here is the Lyndonville News coming out

within a week of a paper being published,

and already what I have to say is old news.

Probably everyone reading this newsletter

has been on the edge of their seats

listening to NPR, CBS, Reuters, and so on.

The CDC has already said that it isn't

going to pan out. It is my guess that the

media coverage will intensify because

this is really big news.

First of all, congratulations…

To Drs. Judy Mikovits, Vincent Lombardi,

Robert Silverman, Dan Peterson and the

rest of the authors. And a special

congratulations to the

Whittemore Family Foundation, and the

Whittemore-Peterson Institute for putting

this together. For many years ME/CFS has

been limping along on complex science that

points to mechanisms of illness that most

physicians have ignored.

Limped along with skeptical specialists,

medical establishments, government agencies.

Limped along despite attacks by disability

companies.

Now we can get down to business.

In this issue of Lyndonville News I will briefly

repeat what has been reported in the

Science paper and the press releases.

But most of all I want to predict where this is going.

I am using the "force" here. 

I have no special or inside information

from the Whittemore-Peterson Institute.

They have to be cautious and circumspect.

I don't. I am an old man sitting on my porch

rocking chair, desperately trying to retire;

I will say what I think is true.

By the way, people are already asking me

if this is related to the retroviral sequences

we published in 1991. Please don't ask me,

history will sort this stuff out; the focus and

attention now needs to be upon the

current work, mechanics of symptom

generation, epidemiology,

and treatment implications.

The focus needs to be upon the

Whittemore-Peterson Institute, and other

scientists who will become involved in

replicating the material and moving on

from there. When I was on the

CFS Advisory Committee we recommended

that ME/CFS centers be established.

That advice fell on deaf ears.

But now, before the Whittemore-Peterson

Institute has even opened its doors, we get

privately-funded science that will end up

changing the world.

Literature Review: XMRV in Science

Dr. Judy Mikovits of the Whittemore Peterson

Institute in Nevada and colleagues at the

National Cancer Institute and the

Cleveland Clinic have published a paper in

the prestigious journal Science, an article

entitled "Detection of an infectious 

retrovirus XMRV, in blood cells of 

patients with chronic fatigue syndrome"

- Online 8 October 2009;

DOI: 10.1126/science.1179052.

[To read the full text article,

go to the WPI website and click on

"View Reprint."]

• The virus, an infectious gammaretrovirus,

  XMRV (for Xenotropic Murine RetroVirus),

  was found in the blood of 68 out of 101

  chronic fatigue syndrome patients, by

  looking for DNA.

• The same virus was present in 

   only 8 of 218 healthy people.

• This virus is known to be "oncogenic,"

  meaning that it can cause cancer. 

  At this point only a link has been 

  established between XMRV and CFS.

XMRV was first linked to human disease

by Robert H Silverman, PhD, at the 

Cleveland Clinic, in patients with prostate

cancer who also had a defect in the

RNAse L antiviral pathway. As this pathway

has been known to be abnormal in CFS(1,2),

it was reasonable to search for the virus

in CFS. In their first paper on XMRV, it was

linked with this RNAse L defect,

but this has since been revised(3).

The XMRV DNA is present in 67% of cases,

and few controls. (More data show greater

than 95% of the more than 200 ME/CFS,

Fibromyalgia, and "Atypical MS" patients

tested positive for XMRV antibodies,

as per their website - www.wpinstitute.org).

High levels of XMRV proteins were expressed,

and they were able to produce infectious

particles in culture.

In the paper, the authors are cautious,

stating that the finding only shows a link

between the virus and CFS, and does not

prove that the pathogen causes the disorder.

Personal Comment: XMRV as

"The Puppet-master Virus"

Is CFS a single illness or a heterogeneous

collection of fatigue-causing illnesses?

This question has been important for

25 years and needs to be addressed at

the beginning of the XMRV era.

In some senses all illnesses are 

"heterogeneous." There is the viral agent

and there is the host. No two hosts are

identical, and even identical twins have

"epigenetic" differences. Therefore it is 

inevitable that phenotypes 

(the way an illness appears in a person) 

may vary. Poliovirus is a good example.

One agent causes a mild flu-like infection

in one person and paralysis in another.

But polio should not be thought of as

a heterogeneous illness.

XMRV may "cause" CFS because it allows

other agents (EBV, Lyme, enteroviruses, etc.)

to be expressed differently. After all, XMRV

is a retrovirus, and look at the variations in

phenotype in other known human retroviruses.

The lymphocytes expressing XMRV were

"activated," implying that this agent was not

just quietly lurking in cells, as some agents do.

The "Two Hit" Theory has been circulating

                     for 20 years.

• One hit is an immune altering silent hit,

• And the second is a herpes virus

   or some other agent.

Actually herpes viruses can carry 

retroviruses along, so here is more work

for the Whittemore-Peterson Institute to do.

John Coffin wrote 

"One New Virus - How many Old Diseases?"(4)

I would think of XMRV as the "puppet-master":

• It is known to be linked to prostate cancer;

• It lurks in the shadows and pulls certain

strings causing cells to become malignant.

• Perhaps it pulls another string to cause

EBV to be more active, or Lyme, 

or enterovirus?

• Another string to alter RNAse L?

Many, many questions open up.

But we already know several things.

• First, ME/CFS is not like your average

infection, pneumonia for example.

This is a really complicated disease.

But AIDS was complicated and now is

pretty well figured out.

• Secondly, we know the clinical aspects

of ME/CFS, putting aside the arguments

over what definition you use. And the 

good news: After following patients for 

20 years, not many are getting cancer.

But there is bad news; cancer takes 

a long time to get going.

But the really good news is that if XMRV

is the puppet-master of ME/CFS, it 

conceivably could be very treatable. 

Theoretically, more treatable than HIV.

Lots of work to do.

The politics of ME/CFS are daunting.

But now may be the time to forge ahead

and get something done.

Congratulations again to the authors 

and the Whittemores. 

It is time for the CDC and the NIH

to be constructive and do some science.

Lyndonville Research Group:

Let’s revive the Lyndonville research 

group again (gasp). 

I would like to test the original Lyndonville

kids for XMRV, and if any of you reading 

this became ill in the Lyndonville, 

New York area around 1985, were 18 or 

under at the time, and want to be evaluated,

please write to me at  

lynnews@davidsbell.com. 

Even if you are feeling great now.

Patient's Observations

1. I feel like I am drowning, and what I

ask is if you can recommend a good doctor

that actually takes...Medicare. I...do not

understand why average doctors seem to

know so little about this...I am on disability;

My resources are limited. I would have to

do this all out of pocket.

Response: How can I answer these

questions that I have now seen for 25 years?

I would say that I feel badly for you,

or shut my eyes and move silently on.

I have been accused of being too optimistic

in the past, and certainly those criticisms

were correct.

But now things are different. Now I am

not going to be too optimistic - 

I think XMRV is going to turn out to be 

the "cause" of ME/CFS, and I think 

treatments will be available from every 

family physician in America 

who accepts Medicare.

The question is whether this occurs

next year or 20 years from now.
.......................

2. As a teacher-turned-programmer, 

due to CFS, cognitive functioning is 

particularly important for me… I now can

barely skim through your not-too-difficult

articles … Anyhow, you said, "I may consider

testing some persons with… PCR for HHV-6,

but this can be expensive and not covered

by insurance." I would like to know about

how much money this can be 

(the potential cognitive benefits could be well,

well worth it for me)…

Response: There are two issues here. 

The first is cognitive. Historically I have

always been struck by the similarities

between the cognitive decline in ME/CFS

and HIV infection. This is one reason that I 

have long felt that a retrovirus would be an

excellent candidate to be the puppet-master.

Secondly, as far as the finances are concerned,

it is possible that things will change.

Federal approval of diagnostic testing

needs to be put on a fast track. Now.
____

References:

1. Suhadolnik R, Peterson D, Reichenbach N,

et al. “Clinical and biochemical characteristics

differentiating chronic fatigue syndrome from

major depression and healthy populations:

Relation to dysfunction of RNase L pathway.”

Journal of Chronic Fatigue Syndrome,

2004;12:5-36.

2. Nijs J, De Meirleir K. 

“Impairments of the 2-5A Synthetase/RNaseL” 

Anticancer Research 2005;25:1013-22.

3. Schlaberg R, Choe D, Brown K, Thaker H, 

Singh I. 

“XMRV is present in ...” PNAS 2009.

4. Coffin J, Stoye J. 

“Perspective - a new virus for old disease?” 

Science Express, online Oct 8, 2009.

——————————————————————

Contact: If you wish to contact Dr. Bell, 

e-mail to lynnews@davidsbell.com; very few 

inquires are answered, but comments 

are welcomed.

To Subscribe: If you wish to either subscribe

or unsubscribe to the Lyndonville News,

go to www.DavidSBell.com/DSBJoin.htm 

and follow the instructions. 

The e-mail subscription is free.

Disclaimer: Any medical advice that is 

presented in the Lyndonville News is generic

and for general informational purposes only.

ME/CFS/FM is an extremely complex illness

and specific advice may not be appropriate

for an individual with this illness. Therefore,

should you be interested or wish to pursue

any of the ideas presented here, please

discuss them with your personal physician.

© 2009 David S. Bell

#22~ Free Tidbits from Dr Cheney Research

I am hoping that we can find a way
to contact Dr. Cheney and let him see
that with holding info from already
gouged and belittled ME/CFS patients
that are already having to decide
between meds & food after YEARS
of no help, no insurance, no disability,
many no family, etc etc, is actually
MORE Mental Cruelty..so if you figure
out a way for us to contact him PLEASE
let me know...

in the meantime here are some tidbits
from his NEW research site...
He updates them frequently so I will
try to add them to the list on the side
and see if they update. If not, you'll
just have to check back about once a week
and see if he's uploaded a new one..

I see that there is info on many different
even within his paid section, so we CAN
get some info just not ALL of it...
I know this "sucks" but I know he
needs the Research money also...
...what to do???

In the meantime we can gleen
what we can from his expertise & research
and see if we can find a way to maybe
talk him into not penalizing the patients
that have already suffered enough
for the last 25 years...

So here are the different links
with some info I have located:

Public blog 

Subscriber's Intro

Cardiology

CFS Diet

Epidemiology

Hormones in CFS

Stem Cell Therapy 
This tells me he IS using
Placental Stem Cell implants

Treatment

XMRV- evolution, flu shots, etc

I know this probably leaves you
with MORE Questions..
But hopefully it also gives you
a bit more info...
Some days we live by the Nuggets that
are tossed in our direction and we try to
make sense of things like good detectives do.

I am posting these  NOT to frustrate you
but because I found some Nuggets that
answered a few things for me and I sincerely
hope that you will also... if you ARE able
to subscribe to his newsletter, I sincerely
HOPE that you will reply to my posts and
maybe feed us some MORE additional
nuggets to let us piece this puzzle that is
our lives a little more together...

Knowledge is Power...
may we gain a little more EVERY Day.

#21~ Dr. Oz., Dr. Donnica Moore, CFSAC

Howdy again,

Well, the news coverage is continuing...

This coming Friday we will have
Dr. Teitelbaum on the Dr.Oz TV show...
not sure how much he can add since
he isn't up on the latest..??? but at
least we will get more Media Coverage.

I also noticed that DrOz changed the
"expert comments" he had on his
CFS page... but NO mention or article
yet about XMRV or WPI.. hummm.....

Remember he Tweets as @DrOz
if you have anything you want to
share with him...

Yesterday morning tho, we also had
Dr. Donnica Moore on ABC's GMA aka
"Good Morning America" with a follow up
to her video of a few week's ago where
she talked about the PEM aka "Post
Exertion Malaise" that ME/CFS patients
got after any kind of exertion and that
it was NOT the same kind of tired after
a normal person's exertion..

This time she was back to talk about
the WPI discovery of XMRV.
Great Comments and Thanks
Dr. Moore... "BIG Hugz"

Dr. Donnica Moore on GMA pt 2

Also, I have found out that
Dr Daniel Peterson will be attending
the CFSAC meeting Oct 29th
to talk about XMRV & CFS.
Please check your local time
for streaming LIVE online coverage
like they did last year.. OK?
..and Sign that Petition about the
CFS definition ASAP before the meeting..


CFSAC Agenda-Oct 29 & 30th

Oh, my 2cents about the supposed
lab test for XMRV that I hear might
be ready soon....
Much ado has been made about it..
#1) Last I knew that had not set a Price
      for the test kit yet..
#2) Unless you already HAVE a Dr that
      is good at treating HIV/AIDS and
      familiar with retroviruses I'm not sure
      how much good this "early" test will
      do for you... If you have a Good Dr.
      Then I say GO for it...
#3) Dr. Mikovits said she would Announce
     when they had a test READY and then
     she will work with a local lab to make it
     public.
#4) As most of us don't even have a decent
     Dr that can believe in ME/CFS I will wait
     for the test that Dr Mikovits approves and
     then get it done.. She feels they are NOT
     That far away from getting one ready....
#5) Now that we are on the Public "radar"
      map, please Beware of the Scammers
      out there that will already be "targeting us"
      as they KNOW we are Desperate for Help
      OK?

In the meantime, please add your comments
and any info you find "HERE", to share with
others, OK? I am trying to add things I find
on the Right column so we can have things
in one location..

Also, if you know of anyone with ME/CFS that
is an artist/crafter that blogs about their art
and uses it as their own form of Art Therapy,
even tho they maybe didn't even ever think
of it as that, I have created a section for them.
We all need to find Beauty and Solace
where ever we can and I am a BIG Believer
in Art Therapy to soothe the Soul...

Also, if you have a Blog about ME/CFS or
even FM or any other Invisible Illness,
let me know and I'll link to you and you can
link to me if you wish. That way we will have
more link-backs to make Google Happy ;-)
I Tweet as "ME_CFS_unite"

We still need to cope while they do more
research....
cheers  & *hugs* to all of you....

#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)