Saturday, August 9, 2014

Breaking news!! Congratulations to Simmaron's Scientific Director - Isabel Barao

Breaking news!! Congratulations to Simmaron's Scientific Director - Isabel Barao, PhD - who won a $75,000 NIH grant to further her work on immune abnormalities in ME/CFS! We all know how important more NIH funding of ME/CFS is, and Simmaron is making progress! The grant only supports 20% of Dr. Barao's salary, so we need your help to continue funding her work on immune cell studies and more grant submissions. A blog by Cort Johnson describing this award is coming soon! Stayed tuned...

Thursday, August 7, 2014

Friedberg: "Overstating recovery rates"  i.e.

Fred Friedberg Warns Against Overstating Recovery Results in Studies
of Chronic Fatigue Syndrome

July 22, 2014 – Commenting on a recently published report of a
large-scale evaluation of behavioral interventions for chronic fatigue
syndrome (CFS), Fred Friedberg, PhD and Jenna Adamowicz warned against
overstating the capacity of any currently available therapy to produce
recovery from CFS.

In January 2013, the journal Psychological Medicine published an
article in which Peter White reported a recovery rate of 22% to 23%
from CFS after treatments given in the PACE trial, a large scale
five-year study in England and Scotland which compared the
effectiveness of various forms of behavioral treatment for CFS. Dr.
White and his colleagues reported that the trial demonstrated that
"cognitive behavior therapy and graded exercise therapy were more
effective treatments for chronic fatigue syndrome than specialist
medical care (SMC) alone, when each was added to SMC."

In their commentary, Dr. Friedberg and Ms. Adamowicz pointed out that
because the term "recovery" was used to refer only to recovery from
the current episode, the outcomes would more accurately be described
in terms of remission rather than recovery. They noted too that the
definition of recovery used in the report does not include the
subjects' perceptions of their health status, particularly if they
view themselves as recovered.

They concluded that because a recovery rate below 25% still leaves the majority of patients with significant symptoms and impairments, "the publicity generated by trumpeting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in behavioral treatment research."

Dr. Friedberg is an Associate Professor and Ms. Adamowicz is a Senior
Research Analyst in the Department of Psychiatry at Stony Brook
University. Their commentary, titled "Reports of recovery in chronic
fatigue syndrome may present less than meets the eye," was published
in the August 2014 issue of Evidence Based Mental Health. It was first
published on line on May 21, 2014. The recovery data from the PACE
trial were reported in an article by Peter D. White, et al. published
in the October 13 edition ofPsychological Medicine under the title
"Recovery from chronic fatigue syndrome after treatments given in the
PACE trial."

* * *
I'll agree that "remission" is a better word than "recovery" -- even when I had "recovered" enough to return to work full-time, I still had periodic relapses.