ME/CFS -Dr. Reeves needs to be removed....

[Guest guest]

From: LK Woodruff Via: CO-CURE

Dr. Wm Reeves needs to be removed

immediately from his position!

~~~~~~~~~~~~~~~~~~~~~~~~

5/5/2007

Director Gerberding:

The following (below) was posted today on CO-CURE, and is

extremely upsetting. It is also yet another example of why Dr.

Wm Reeves needs to be removed immediately from his

position, and no longer be involved with efforts regarding 'CFS'

(Fukada, et al)!

I do believe the man has completely lost touch with reality. I know

he has spent the past 30 years both obfuscating illness

information, and as the post below shows yet again, consorting

with the 'Wessely School' of proponents, a group of primarily UK

psychologists and psychiatrists whose sole purpose for years

now has been to inundate the world with reams and reams of

data about their MADE-UP psychosocial illness MODEL, which

they refer to as 'CFS/ME'. It is well-known that they are paid

handsomely to do so by companies like UNUM, etc.

Please further understand this:

--> The WHO does not recognize or code any illness called

'CFS/ME' .

``````

Furthermore,

People who meet the Fukada, et al, criteria for 'CFS' may well

benefit from CBT and GET, as they are 'fatigued' for some

reason. Many illnesses present with fatigue. And once that

reason--or illness--resolves, so too will the fatigue...which means

the majority will likely 'recover'.

``````

--> But this is NOT the case for people with ME!

These patients were hit by a 'sudden onset viral event', followed

by a 'cascade of events throughout their bodies' which left them

with all of the many very specific symptoms of ME (which is

classified very differently by the WHO under G93.3, Neurogenic).

These patients will only become worse when trying to exert, due

to the very different physiology of their illness, and the extensive

damage to their bodies.

````````

It is beyond absurd that so many continue--with all that is known

today from the scientific research done worldwide and

to-date--to act as if these 3 things are the same, when they very

clearly are NOT.

````````

May is ME Awareness Month

And I continue to ask:

* Why does the the USA have no planned ME Awareness

activities?

* Why does it not recognise ME? (G93.3, ICD10)

Well, one reason may be because the USA still has not adopted

the 15+ year old ICD10 Codes! I know my medical diagnosis

continually reverts back to CFS, for that reason!

* Why does it do NO ME research?

* Why does it ignore those of us so horribly ill with such a

debilitating neurogenic illness?

* Why does the gov'n persist in focusing what little effort and

money they do, on 'CFS' instead???

``````

No one ever died from 'CFS', but the far more debilitating ME

does kill.

An entirely new approach and focus is way past due. Please

lead the way, Director Gerberding. The patients with true

ME--which is NOT a subset of CFS!!--are far too ill and

struggling mightily to just make it through each day. They cannot

possibly take on an active leadership role. Tho many of us wish

we could....

Please work closely & collaboratively with prominent, valid,

committed researchers around the world to finally understand the

etiology of ME, and help improve the lives of those who suffer so

horribly from it. End this tragedy....

Know that just because Reeves, et al, have chosen to NOT DO

biomedical research does NOT mean none exists!!!

I have written to you previously. I have tried to send relevant and

timely scientific illness information. I have provided names of the

top researchers from around the world. I have offered to help in

whatever ways I am able to.

I am horrifically ill. And I am sick to death of reading about

Reeves' continued and misguided nonsense!!!! Get someone

serious into that position. Someone who does more than phone

prevalence studies on 'fatigue' and 'behavioural assessments'.

Someone who doesn't hang out with the 'Wessely School', or go

play military on the weekends.

Hire a scientist with excellent credentials and the drive to

conquer a devastating illness. And then see how quickly things

start happening.

Most sincerely,

LaVonne K Woodruff

lkw777@...

651/295-0935

2884 138th St W

Rosemount MN

55068-3465

#####################

Date: Sat, 5 May 2007 00:33:23 +0100

Subject: NOT: CFS at the 28th Society of Behavioural Medicine

Annual Meeting & Scientific March 21-24, 2007

(Please check pdf 155 pages if interested. These are just

relevant snippets):

http://www.sbm.org/meeting/2007/finalprogram.pdf

WHITE, CHALDER & REEVES

From Efficacy to Effectiveness - Assessment and

Treatment of CFS

-->28th Society of Behavioural Medicine Annual Meeting &

Scientific Sessions March 21-24, 2007 FINAL PROGRAM

28th Annual Meeting & Scietific Sessions

Science to Impact

-->The Breadth of Behavioural Medicine

Final Programme

-->'Better Health through Behaviour Change'

March 21st-24th 2007

Marriot Wardman Park

Washington DC

Symposium #3 9:00 am - 10:30 am

Admission by name badge.

land Suite C, Lobby Level

From Efficacy to Effectiveness - Assessment and

Treatment of CFS

--> Chair: C. Reeves, MD, Division of Viral and

Rickettsial Diseases, Centers for Disease Control and

Prevention, Atlanta, GA

--> Trudie Chalder, PhD, MSc, Psychological Medicine, King's

College London, London, United Kingdom;

--> White, MD, Psychiatry, Barts and the London, Queen

School of Medicine, London, United Kingdom;

--> Heim, PhD, Department of Psychiatry & Behavioral

Sciences, Emory University School of Medicine, Atlanta, GA

Discussant: Heim, PhD, Department of Psychiatry and

Behavioral Sciences, Emory University School of Medicine,

Atlanta, GA;

Trudie Chalder, PhD, Department of Psychological Medicine,

Institute of Psychiatry King's College London, London, United

Kingdom;

White, MD, Barts and the London, St

Bartholomew's Hospital, London, United Kingdom

Table 9

--> CFIDS Association/Centers for Disease Control The

CFS Provider Education Project is a CDC-supported

multifaceted medical education program focused on

diagnosis and care management of persons affected with

chronic fatigue syndrome.

Symposium #19 10:00 am - 11:30 am

Admission by name badge.

land Suite A, Lobby Level

--> Biobehavioral Linkages in Chronic Fatigue Syndrome

--> Chair: C. Reeves, MD, Centers for Disease Control

and Prevention, Atlanta, GA

--> Presenters: C. Reeves, MD, Centers for Disease

Control and Prevention, Atlanta, GA;

--> F. , MD, Centers for Disease Control and

Prevention, Atlanta, GA;

--> Suzanne Vernon, PhD, Division of Viral and Rickettsial

Diseases, Centers for Disease Control and Prevention, Atlanta,

GA

Discussant: C. Reeves, MD, Centers for Disease

Control and Prevention, Atlanta, GA;

F. , MD, Centers for Disease Control and

Prevention, Atlanta, GA;

Suzanne Vernon, PhD, Centers for Disease Control and

Prevention, Atlanta, GA

3424

--> MEMORY FOR FATIGUE IN CHRONIC FATIGUE

SYNDROME: RELATIONSHIPS TO SYMPTOM VARIABILITY,

CATASTROPHIZING AND NEGATIVE AFFECT

J. Sohl, MA1 and Fred Friedberg, PhD2

1Social/Health Psychology, Stony Brook University, Stony

Brook, NY --> and 2Psychiatry and Behavioral Science, Stony

Brook University, Stony Brook, NY.

In the absence of a definitive biomedical test for chronic fatigue

syndrome (CFS), symptom self-reports have assumed much

greater importance in behavioral assessments and physician

office visits. In -->an effort to quantify the differences between

what patients ~remember about their fatigue~ as compared to

the fatigue levels they actually experience, experience sampling

methods have been used.

This ecological study hypothesized that recall of fatigue in CFS

will be related to

(a) the variability of momentary (real-time) fatigue ratings and

( the psychological variables of catastrophizing, anxiety, and

depression. In addition, it was expected that

© -->catastrophizing, anxiety, and depression would be

associated with the intensity of momentary fatigue.

Subjects were fifty-three adults with CFS who carried electronic

diaries for three weeks to assess their momentary ratings of

fatigue. Retrospective fatigue intensity was measured with

weekly recall ratings of momentary reports. Standardized

questionnaires for catastrophizing, depression, and anxiety were

also administered.

Results partially confirmed our first hypothesis: Higher variability

of momentary fatigue was related to recall of higher fatigue

levels relative to average momentary fatigue ratings (week 1: r =

..46, p < .002; week 2: r = .33, p < .05). However, the week 3

correlation was non-significant (r = .04, p = ns).

Our second hypothesis was also partially confirmed: Higher

levels of catastrophizing (r = -.37; p <.05) and depression (r = -

..36; p <.05) were associated with more accurate recall of

momentary fatigue.

Finally, catastrophizing (r = .47, p < .001) and anxiety (r = .46; p

<.001) were significantly related to the intensity of momentary

fatigue.

These findings suggest that fatigue measured in real time

is related to modifiable psychological factors that can be

identified in behavioral and medical assessments.

CORRESPONDING AUTHOR: J. Sohl, MA,

Social/Health Psychology, Stony Brook University, Port

Jefferson, NY, 11777; .Sohl@...