Saturday, January 30, 2010

Post Exertional Malaise and the PACE Trial

Post Exertional Malaise and the PACE Trial

The Chief Medical Officer's working group report states:  "One of the most common and characteristic complaints of adults, particularly in the early stages of the illness, is of intolerance to both physical and mental exertion with delayed impact. So perhaps the key pointer to a diagnosis of CFS/ME is the way in which the symptoms behave after increased activity."

All 3 of the strata criteria for the PACE Trial include fatigue and the CDC criteria specifies fatigue, ''is not substantially alleviated by rest" and "post-exertional malaise lasting more than 24 hours", the latter being one of the multi-choice factors.  There appears to be no specific mention of the delayed affects of effort which mean that people with ME/CFS might still be experiencing worsening of symptoms hours later and often cannot repeat an exercise the following day.

The ME Association and The Young ME Sufferers Trust wrote (2008.

"When patients are made worse by GET (which is based on the flawed concept of deconditioning) this is not merely due to a problem with the way in which the therapy is delivered. Post-exertional malaise is a key diagnostic criterion for ME/CFS. Put simply, the illness worsens as a result of physical and mental effort. Advocating progressive exertion is to show a worrying lack of knowledge about the nature of the illness itself."

The MEA's view is supported by the research of Paul et al who tested delayed recovery from exercise in CFS.  They concluded, "These findings support the clinical complaint of delayed recovery after exercise in patients with CFS." (

Cort Johnson wrote about the Pacific Fatigue Lab findings when they had people with ME/CFS repeat an exercise test the following day (

"Their results are both profound and disturbing. About half of the ME/CFS patients they've tested do, in fact, 'fail' or significantly under perform in the first single exercise test - they cannot generate normal amounts of energy even when they're 'rested'. It's the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well--and fail spectacularly."

"The amount of impairment the Lab see's can be astonishing - some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old. In a hospital setting his cardiopulmonary exercise profile would suggest he had heart failure."

If the PACE Trial is not studying the delayed effects of effort which can be objectively measured and which seems to be quite specific to ME/CFS, it is a lost opportunity to gain information about the suitability of the therapies for particular patients according to their physiological response to activity.

Peter Kemp

DeFreitas on Retrovirus

"And suddenly I could see myself 20 years from now, when I'm a high school
biology teacher and someone calls and says, 'Hey, they just found a
retrovirus in CFS'. And maybe that's how it will happen. And I know how I'll
feel - it'll feel great" Elaine DeFrietas
Chronic fatigue syndrome (ME/CFS)
patients, of course, weren't the only ones to feel the sting of this
mysterious illness - their advocates have as well. Certainly there's no more
disheartening story on the researcher end than Elaine DeFreitas whose career
rose and fell on the horns of the dilemma that has been chronic fatigue

Check out the story of the story of the First Retrovirus in ME/CFS on the
new Front Page section of the Phoenix Rising Forums.

Friday, January 29, 2010

Breathing Deep with Valtrex, a Patient Improves

Read how an unusual combination of valtrex and alternative treatments helped an ME/CFS patient improve dramatically.

Check it out on the new Front Page section of the Phoenix Rising Forums:
* * *
Valtrex is similar to (and less expensive than) what Dr. Montoya has been using.  One of my online support group members had a doctor suggest that they try the less-expensive Valtrex first, and did see improvement.



CDC Leadership Change

The U.S. Centers for Disease Control and Prevention (CDC) has announced
that Dr. William C. Reeves, head of the agency's CFS Research Program,
will be taking a new position within the agency effective Feb. 14, 2010
and that he will no longer lead the agency's CFS research. Dr.
Elizabeth Unger will serve as acting chief of the Chronic Viral
Diseases Branch, the unit within CDC that houses the CFS Research
Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior
Advisor for Mental Health Surveillance in the Public Health
Surveillance Program Office within the CDC's Office of Surveillance,
Epidemiology, and Laboratory Services.

The CFIDS Association of America, other organizations and advocates
have vocally supported new program leadership to effect a more robust
research effort at CDC. This staffing change has the potential to
significantly advance CFS research beyond the agency's intramural
program and to seize scientific momentum generated by recent
discoveries. We are fully dedicated to making rapid progress in this
new era of collaboration and discovery in CFS research.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

Break out that bottle of whatever you were saving for a momentous occasion, because this is it!

Lynn's lasting legacy for the victims of ME


Wednesday, January 27, 2010

More on Pacing and CFS  

JRRD at a Glance

Volume 46 Number 7, 2009
Pages 985  - 996

Can pacing self-management alter physical behavior and symptom severity in
chronic fatigue syndrome? A case series

Jo Nijs, PhD, PT; Inge van Eupen, OT; Jo Vandecauter, PT; Els Augustinus,
PT; Geerte Bleyen, OT; Greta Moorkens, PhD, MD; Mira Meeus, PhD, PT

Chronic fatigue syndrome (CFS) is a serious illness with high disability
levels. This study examined whether physical behavior and health status of
patients with CFS improve in response to an activity self-management
program. Activity self-management for people with CFS involves encouraging
the patients to pace their activities and respect their physical and mental
limitations. It involves encouraging the patient to achieve an appropriate
balance between activity and rest in order to avoid exacerbating symptoms.
Seven patients with CFS were observed for 7 consecutive days prior to and
following the activity self-management program. Following treatment,
patients experienced less severe symptoms, improved daily functioning, and
displayed different physical behavior.


Abstract - Can pacing self-management alter physical behavior and symptom
severity in chronic fatigue syndrome? A case series

Jo Nijs, PhD, PT;1-3* Inge van Eupen, OT;4 Jo Vandecauter, PT;1 Els
Augustinus, PT;1 Geerte Bleyen, OT;4 Greta Moorkens, PhD, MD;5-6 Mira Meeus,
PhD, PT1-2

1Division of Musculoskeletal Physiotherapy, Department of Health Care
Sciences, Artesis University College Antwerp, Antwerp, Belgium; 2Department
of Human Physiology, Faculty of Physical Education and Physiotherapy, Vrije
Universiteit Brussel, Brussels, Belgium; 3Department of Physical Medicine
and Physiotherapy, University Hospital Brussels, Brussels, Belgium;
4Division of Occupational Therapy, Department of Health Care Sciences,
Artesis University College Antwerp, Antwerp, Belgium; 5Department of
Internal Medicine, University Hospital Antwerp, Antwerp, Belgium; 6Faculty
of Medicine, University of Antwerp, Antwerp, Belgium

Abstract - Given the lack of evidence in support of pacing self-management
for patients with chronic fatigue syndrome (CFS), we examined whether
physical behavior and health status of patients with CFS would improve in
response to a pacing self-management program. We performed an observational
study of pacing self-management in seven CFS patients using a single-case
study design. Stages A1 and A2 (7-day assessment periods) of the A1-B-A2
design corresponded to the baseline and posttreatment measurements of
physical behavior (real-time activity monitoring) and health status
(self-reported measures), respectively. Stage B (3 weeks of treatment)
consisted of three individual treatment sessions of pacing self-management.
When comparing pre- versus posttreatment data, we found that the patients'
ability to perform daily activities and the severity of their symptom
complexes were improved (p = 0.043). Concentration difficulties, mood
swings, muscle weakness, and intolerance to bright light improved as well. A
statistically significant decrease in the mean time spent doing light
activity (<3 metabolic equivalents) was observed, but a change in the way
physical activity was spread throughout the day was not. We found that 3
weeks of pacing self-management was accompanied by a modest improvement in
symptom severity and daily functioning. The outcome of the present study
calls for a randomized controlled clinical trial to examine the
effectiveness of pacing self-management for people with CFS.

Key words: activity, activity peak, behavior, CFS, chronic fatigue, pacing,
rehabilitation, self-management, syndrome, therapy.

Free full text in html at:  

Free full text in pdf form at:  


JRRD is an open-access, international peer-reviewed rehabilitation journal
published in English, with 10 regular issues published per year. The journal
has been a leading research journal in the field of rehabilitation medicine
and technology for 45 years. JRRD publishes original research articles,
clinical studies, topical reviews, and editorials from U.S. and
international researchers covering 31 rehabilitation disciplines. JRRD
publishes both multi- and single-topic issues.

The journal is an official publication of VA's Rehabilitation Research and
Development Service. JRRD is available at no charge by request.
International users, however, are encouraged to access the journal online at  . For more information
about the journal, please visit  .

Tuesday, January 26, 2010

Bulletin of the IACFS/ME

Dear IACFS/ME Member:

The Winter issue of the Bulletin is contained in this email; this time with simplified access-- no password required. Access through the website ( for current issues only still requires a password. This will be our policy for all future issues.

Thank you for your patience.
Best regards,

Fred Friedberg, PhD

Bulletin of the IACFS/ME

A Quarterly Publication of the International Association for CFS/ME


Gudrun Lange, PhD
UMDNJ-New Jersey Medical School
Newark, NJ

Editorial Advisory Board
Helena K. Chandler, PhD
Department of Veteran Affairs
New Jersey Health Care System
East Orange, NJ

Dane B. Cook, PhD
University of Wisconsin
Madison, WI

Patricia A. Findley, DrPH, MSW, LCSW
Rutgers University
Newark, NJ

Fred Friedberg, PhD
Stony Brook University
Stony Brook, NY

Jonathan R. Kerr, MD, PhD, FRCPath
St George's University
London, United Kingdom

David M. Marks, MD
Duke University Medical Center
Duke Clinical Research Institute
Durham, NC

Rosamund Vallings, MNZM, MB, BS
University of Auckland
Auckland, New Zealand

Managing Editor
Greg Fillmore

Volume 17, Issue 4 • Winter 2009-10

Table of Contents

Note from the Editor
Gudrun Lange, PhD

A New Fatigue Typology for the Chronic Fatigue Syndrome
Lucy Dechéne
   Fitchburg State College
   Fitchburg, MA, USA
Fred Friedberg
   Stony Brook University
   Stony Brook, NY, USA
Marjorie J. McKenzie II
   East Hartford, CT, USA
Robert Fontanetta
   Floral Park, NY, USA

Severe ME/CFS in Adults - A report from the CHROME Database
Derek Pheby
   Buckinghamshire New University
   Uxbridge, Middlesex, UK
Peter Sneddon
   Middlesex University and CHROME Research Group
   London, UK
Inge Heinrich
   Sandwich, Kent, UK

Immunotherapy of Fibromyalgia and Chronic Fatigue Syndrome
by a Staphylococcus Toxoid Vaccine

Carl-Gerhard Gottfries
Ove Häger
Olof Zachrisson
   The Sahlgrenska Academy, University of Gothenburg
   Mölndal, Sweden
Johan Gottfries
   Umeå University
   Umeå, Sweden

Instructions for Authors


Lynn Gilderdale's moving account of why she decided to end her life


Lynn Gilderdale's moving account of why she decided to end her life (The
Times, 26 January 2010)

Very moving indeed
Dr John H Greensmith
ME Free For All. org
* * *
In the early days of CFS, before they knew about the cancer and cardiac connections, the doctors were telling us "CFS won't kill you, but it may make you kill yourself".
No one who hasn't walked a few miles in our moccasins can understand that the constant pain, the verbal abuse, the lack of treatment (including doctors who frustratingly refuse to prescribe anything to alleviate the symptoms that could be helped with available treatments) are all reasons patients consider suicide.
A friend regularly points out that in jail, you're confined to an 8x10 space, can't walk more than a few feet in any direction.  I pulled him up short with a reminder that many CFS patients are confined to a much smaller space, the size of a bed, and can't walk more than a few feet, period.  If he'd go stir-crazy in jail, where at least he could read books, what would he do with such severe CFS that he couldn't concentrate well enough to read?
It's death penalty (or at least Life Without Parole) for innocent people.  But where are the civil rights activists and Amnesty International and UN Committee on Human Rights fighting for OUR right to life?  Much less "life, liberty and the pursuit of happiness" -- because it's very hard to pursue happiness when you're stuck in bed too exhausted to even reach for the TV clicker.

Sunday, January 24, 2010

Health Care Plan: Don't get sick; if you do, die quickly

Many many stories of people who found that once they got sick, their insurance didn't cover what they thought it would.  Treatment delayed, denied, or much less than doctors recommended.
Family members spending hours every day fighting with the insurance companies.  The question arises: what about those who don't have family to do that?
My parents are elderly and have their own health problems.  I have no siblings, no spouse, no children.  I'm on my own here -- if there's a fight to get me the medical care I need, or to get it covered by insurance, I have to do my own fighting.  If I'm too sick to fight for it, I don't get it.