#111~ Dear CFSAC~ One last time- Getter' DONE !

Dear Dr.'s Wanda Jones , Chair Chris Snell and all CFSACommittee members and attendees,

I HAD wanted to be Polite and respectful in this letter but the NIH meeting has brought out my "Outside Voice" 

cuz the WE patients are ticked off and as the Movie "Network" says~ "We are Mad as Hell and are NOT going to Take it ANY MORE" Got it ? Is that Clear ?

 

Do you need it in a few more languages ? Is everyone putting down the blackberries long enough to even read this??

Remember you ARE on Camera and all nose-picking Will be ( and has been)  observed.... Wake UP you ARE on Camera and this should NOT be another version of the World's Funniest Videos of 2011." 

I had been wanting to be in a Happy Mood when I wrote this letter but after the actions of Dr.'s Coffin and Vernon at the NIH State of Knowledge Workshop, I must say I am extremely Upset and in disbelief that #1~ Dr Vernon does NOT represent us in ANY WAY and the patients do NOT want her to utter "ONE WORD" to us or ABOUT US. Period. We have even created a Petition to that effect that has already gathered many signatures.. 

 

Who died and made her the MC at the end of the meeting ?  And she demonstrated her lack of courtesy when she was interrupting "what the viewing audience was seeing as a VERY Important discussion between 2 researchers"... How DARE Her ?

We have waited almost 30 years to HEAR these discussions.... Shame on Dr Vernon........... "Black Mark Given." by MANY !!!

Dr. Monroe of the CDC's  "poor Joke" at the NIH about not wanting to miss his plane was NOT Lost on the patients...

Especially, since it was the CDC that shot down Elaine DeFeitas in 1990 when another Retrovirus was in the early stages of being linked with ME/CFS.

 

Elaine made her BLT with Best Foods Mayo and the CDC decided to use Miracle Whip> Guess what> Garbage IN Garbage OUT> Then, they claim that "they can't replicate her findings".so... . She invites them UP to her lab to watch every step she takes.. and their excuse is that "they can't afford the 2 plane tickets to get up there." PALEESE... How Lame> When they ARE the ones that have the Name" Centers for Disease CONTOL and Prevention. Did they FORGET THAT ???

Hey, CDC, Dr Monroe, How MUCH IS YOUR LIFE WORTH? A plane ticket ???

Give me a fricken break.. and for THAT we go another 20 years without Help or Treatment ?

Right now the CDC is an acronym for us that stands for "Can't Detect CR*#" = until they start acting with INTEGRITY toward their citizens... They TRULY ARE a Worldwide Embarrassment to the USA.

And I am equally dismayed and repulsed and almost made physically SICK, by Dr. Coffin's wish to discontinue all XMRV Research... How DARE He...??
A REAL Research Scientist would WANT to Keep Looking > when they already have Thousands of patients that ARE Testing Positive, either by PCR or Serology or Culture and DO have antibodies and>  Hello many were sick before Dr Collins 1992 date, whatever that was about... We have been sick since the mid 1980's~ Was he NOT even listening ??? There are NOW 7 cohorts, in 7 countries that have tested XMRV+ from different labs... So his arguments are MUTE points... Maybe he needs to buy a Hearing AID> poor baby should we chip in to buy him one ??

 

I think NOT, he has wasted enough of our money and can't replicate anything because HIS fricken lab is the one that is contaminated..

I respected him in the beginning, but he has now lost all of our respect... Until IF and When he chooses to EARN it back...

by Continue Researching what we already Have> a retrovirus called XMRV, and starts doing the proper tests and using the proper proteins.

I don't think he had his hearing Aid ON "At ALL" during the NIH SoK unless someone other than Dr Judy was talking...

Not too much Prejudiced there, especially to have the cajones to call for Research to STOP when we are sick with it... Disgusting !!!

Maybe it is True ? That "That Takes Ovaries" and that is WHY Only Elaine DeFrietas and Annette Whittemore and now Dr Judy Mikovits been the ONLY ones to NOT worry about their cajones and have learned to Speak UP FOR THE Patients...

Which is what you, the CFSAC,  SHOULD BE DOING NOW.......................................

We are getting the feeling that either:

#1) "Some of these Researchers" do NOT Care about the Truth...........Thank you Dr Coffin> aptly named I might say.....

            Those that DO Care, we could Easily tell who they are and "We Thank Them Whole-Heartedly" ♥

#2) That our Government and this committee does not really care about us or the millions around the world being effected.

#3) that this government is being penny-wise and pound Foolish, because we DO want our Lived Back like Robert Miller Said and we would LOVE to be paying Taxes and helping the deficit.. but many of us because the lack of knowledge after YOUR and YES I mean ALL of YOU> is literally embarrassing and you have NOT Cared one iota about REALLY Helping us~ or you would have Meant what you have said and Done something about it !!! All we get here, until NOW,  literally IS Empty Words..

Where ARE your Consciouses ? You very well KNOW How sick we are and you Demand NOTHING >>>>>>>>>>>>>>

You KNOW as Dr.'s Leonard Jason and Chris Snell pointed out Extremely Well at the NIH> that we DO HAVE 

"Post Exertion Malaise".. that is a HUGE Part of what sets us apart from those that only have depression..
The Canadian Case Criteria KNOW it , We ALL Know it, Many Drs KNOW it, now its time for the CDC to KNOW it and OWN it, Period.

 

Was Anyone Listening ???? Did you listen about the OI/POTS parts that effects our Oxygen intake and our ability to stand UP ?? and YES>effects our hearts ??

I hereby not only request, but a an insulted 17 year hospital worker that had to quit my job because of this illness 

and now cant even get Disability because it took TOO Fricken Long to get a Diagnosis, which was NOT MY Fault cuz no Doctors have been educated about us,

but I DEMAND that this committee Send a message to the CDC in their STRONGEST Language to Cease and Desist with the infantile psychobabble that they have 

on their website about this illness and start acting and behaving like REAL Scientists and Take DOWN THAT "GET" junk that Physically HARMS our hearts and 

many of us have already had therapy because of the abuse of our Dr's and the CDC "not believing us" for 20+ YEARS... SO THEY HAVE ALSO INFLICTED

PTSD on many of us, Yet we Fight ON, because we KNOW the Truth and the world is also learning the Truth... that the CDC and NHS are Puppets

of the Psych Dept and the Insurance companies... We have had enough of this.. and you WONDER WHY our the Health Coverage in the country sucks ?

Emory University wrote a paper A YEAR AGO about those of us infected with XMRV+ and co-infections and What Meds would help us...

Where the Bleep are these Drug Trials ??? Magic Johnson is FINE on his meds and God KNOWS you are NOT letting us have any meds to get better so we can Have our Lives back and be Functional citizens again and get jobs and Pay taxes... What are you hiding ???Who are you covering-UP ??

WHY DO YOU WANT US to be SICK ? OH, so you can carry on this charade of doing non-relevant research for another 25+ years... WRONG !!!!

Like Dr Ruscetti said a month ago... If this were HIV this would be 1983.......

Wake UP>  The Band IS Playing ON......... and you are NOT getting us any help NOR cleaning the blood supply...

You should all be ashamed of yourselves that you have let this Crime against Humanity GO ON THIS LONG>...

It is now World-wide and not only within the confines of the USA.

I was was Proud working in a hospital for 17 years that REALLY Cared about their Patients like Dr Bateman does..

and like WPI and Dr Judy Mikovits do.... but I have seen NO medical ethics displayed here recently..

I have felt NO Urgency to Help those with a RETROVIRUS and co-infections Get Treatment... NOW

Shame on ALL of you>>>>>>>>>>>>>>>>>>>>

 

You are literally watching as Rome burns or better yet as this Holocaust plays out and kills another Generation...

We ARE on our 3rd Generation now and the Family Trees are showing up things like Lymphoma

and Autism..Breast Cancer and oh yeah >  Thanks My mom died from Lymphoma and I have XMRV...

 and you play your fiddles..... and yet YOU collect your pay checks..

GIVE YOUR PAYCHECKS BACK TO PAY OFF THE DEFICIT OR "DO SOMETHING TO HELP US" > NOW

YOU HAVE 2 DAYS TO GET IT RIGHT, THIS TIME... PLEASE....

EARN YOUR PAYCHECKS... Speak UP and actually DO something to get the Huge Ball Rolling to get the CDC off their Butts

and the FDA off their Butts and get us some Clinical Trials... We have "ToDo Lists" we are NOT simply depressed

like the CDC website seems to think.... That website is an atrocity...and an embarrassment to the citizens of the USA.

If they have NO Respect for us, WHY on God's Green earth should we Respect them ??

If they don't believe XMRV is Real ? are they willing to receive a transfusion of blood tainted with it ???

This ostrich game everyone is playing is getting really OLD>...Older than I am... and the World IS seeing Right thru it..

The DHHS>NIH can't Afford any Centers of Excellence> Hello> The WPI already Exists... Help them dang it !!!!

I also hereby "Officially request that the NIH Create an Additional SEP for the study of XMRV~ NOW" >
Cuz otherwise there is NO Place that Grants can be written and sent to study this,... unless they come in 

a back door thru some other of the MANY co-infections and that is BS> to the Hilt...

PLEASE Tell me> HOW MANY PEOPLE BEING SICK CONSTITUTE AND EPIDEMIC OR PANDEMIC ??
NOW answer truthfully here ??? Please....

There are at least 17 million worldwide in this new 21st, Airplane bug hitch-hicking era Century and that's

ONLY including the 20% that they say HAVE been diagnosed...

How about the Millions with Lyme that are testing XMRV+ ?

How about the 25% of Breast Cancer samples that are also testing XMRV+ ?

How about those with OI/POTS and XMRV ?

How about those with NO adrenal function or Thyroid function and XMRV ?

How about those on our Family Trees that now have Autism ?

How about all of the families brought to Bankruptsy trying to care for their "sick member" ??

How about the thousands that not ONLY do not HAVE any medical coverage OR Disability, 

but have NO ONE to care for them and are Bedridden ?

Is the USA ~ Really a 3rd World country again ?? 

That seems to be the way you treat your citizens...

Dr Jones, How much is your Life worth to you ?

Dr Snell, How would you feel if you were bedridden for YEARS but your brain STILL worked fine ?

Where are the "Job Fairs" for the bedridden ????

We can't get Disability cuz the Dr's didn't know what we had..

We can't get jobs that aren't scams from home in bed..

WHAT do you expect us to LIve on and How do you expect us to Exist ?

And we were Hospital workers, professionals, professors, etc, Please Help us..

Where is your consciouses ???

We Demand a NIH SEP for the Research of XMRV and all cohorts connected with it NOW< Period.

 

If you do NOT make this a recommendation to Sec. Sebilius than we WILL KNOW where the CFSAC stands

and how much they Care NOT about the thousands of us that are NOT getting ANY Treatment or medical care

and are being simply left here to die.... so put THAT on your conscious... OK ?

HOW MANY YEARS MUST WE BEG FOR THE SAME THING ??

Do your salaries NOT Pay you enough to Buy Hearing aids ???

At this point , I really do NOT give a Rats A*# where or How we got it, but we HAVE IT and are testing Positive for it and HAVE Antibodies> Hello !!!

YES OLD ANTIBODIES> so not obtained after 1992....capiche ??

Sick Before Coffin's 1992 date = a Mute Point..  What's your Next excuse ?? For NOT Helping us ??

Continue your other Research, but for Gosh Sakes,  "KEEP Researching the thing we ARE and Have antibodies for"  = DUH 

The poor Medical MDs that that you put on the front lines to treat us are the ones that catch ALL of the FLack ALL Year Long...

SHAME ON YOU> EDUCATE THEM... WITH OUR BIO-MARKERS SO THEY CAN KNOW WHAT TO TEST FOR...

 

My CD4CD8 is off and backwards, I have had HSV since I was 5, had EBV/Mono when I was 19, but to went away

and I was able to get married and work in the hospital for 17 years until I had my Triggering Event...

I had  HIGH Fever "Sudden ONset" with a low grade fever that last for over 2 years....

I was on the couch living alone during that period. I could not even go to the hospital to say Good-bye to

My closest thing to a sister that was dying from AIDS as NO ONE could tell me what I had...

My EBV at the tome was very LOW> so NO it was NOT EBV> Get it ??

It had taken me 23 years to even obtain an written letter from my Dr that says I have > OH yes..  CFIDS and it is Spelled out... as well as OI< but she forgot the POTS part... and YES I have my own BP cuff and I use to work in a BP clinic, so I know how to take it. My thyroid gland is shot and so are my adrenals now.. so I must take expensive meds to supplement what my body can not make.... Where is ANY Mention of the deterioration of the body that THIS ILLNESS COSTS us so we can KNOW "what NOT to do" or "What to do to Help ourselves" = NO Where !!!

 

If you had DONE or Listened to Elaine DeFreitas maybe many of us would NOT even BE this sick now...

So you NOW have a Second  Chance to get it Right... Your Center of Excellence is WPI>

Get that through your Brain Please.. They are the ONLY one to already be using Translational Medicine

which Dr Vernon to her detraction, tried to adopt and claim and a New idea, when WPI was already set UP that way 5 years ago !!! Vernon, maybe YOU need some Hearing Aids also, cuz we will NOT put up with your Revisionist History either.. capiche ???

Vernon talk about Everything that XMRV has done to bring ME/CFS into the Light of the Press and Scientists was done by the WPI not simply XMRV... sheez.... XMRV did not research anything. XMRV did NOT bring together the NCI and Cleveland Clinic, and it was the WPI that with them got the Science paper Published.. Vernon you can NOT claim what is not yours and you jealousy of them is showing as Green and your lack of knowledge and Expertise...

Last time I wrote you, I thought it might be my last, but NO Thanks to YOU I have found HOPE in WPI and learned a few things to help and my money has not quiet run out YET
so I am not on the streets YET, but I do NOT have enough to last until I am 66, so I will either die, or get meds, or lose the house I PAID for like a good citizens, and will probably have to go live in my trailer God knows where cuz I can't even drive to pull it anymore.. I use to travel to do my Nature photography in it.. to take me away from the stress of the  hospital politics during the early days of HIV and AIDS....

but here we are again.... "And The Band PLays ON... 

PLEASE REMEMBER THE

WORLD IS WATCHING YOU AND ALL OF THESE MEETINGS AND THEY KNOW  WHETHER YOU CARE OR ARE ACTING SPINELESS.

 

For God's Sake DO something to Help us... Help those NOW that are XMRV+ Plus co-infections and Please get the Psychobabble OUT of the CDC's website and let's start acting like Adults here and Clean the Fricken Public Blood Supply NOW> NOT Years from now.. 

You are continuing to commit Crimes Against Humanity by your "Lack of Action." Period.

Own your Cajones or Ovaries and STand UP for what is Right... This Time NOW

Even Dr's Bell's Lyndonville kids tested 70% Positive for XMRV~

You want our blood FINE we'll donate it to you Personally~

You ARE Taking our lives... so what else do you want ?

We will NOT shut up for you or anyone at this point...

We have had enough > Got it... 

We will speak up until our dying Day or until you get us some Meds to Help us  as you are suppose to do !!!

It's Your choice... Give us Meds and DO More Research including a SEP for XMRV or we WILL start being heard in more ways than Egypt planned for...

Many around the world are not taking what is handed out bay their dictators any more and you have been not representing us effectively for the last 20 years.. nor the CDC/NIH for the last 30 years.......while "The Band IS PLaying ON>.

So HERE"s your chance NOW> Do it and show us what you are made of....

Cuz your actions will show more than your mere lip service

that we have been getting for decades.. while children die and the 3rd Generation gets infected...

WAKE UP and PLease SPEAK UP> NOW

The world is watching you and what you say and DO.............

Sadly, I remain,  w/o hope unless you create a XMRV SEP and get us Help........

I might remain a while longer but I will NOT go down quietly and will broadcast to everyone, everything this government, AND every other Gov't  has NOT done to take care of this NOW worldwide PANDEMIC. Wake UP !!

I had the Test, Now I need the meds..........

"Kill/Incapacitate the BIG BUG, then deal with the co-infections"

or does THAT make TOO Much sense ?

ShareThis

#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)