The Challenges of Chronic Fatigue Syndrome

The Challenges of Chronic Fatigue Syndrome

Research: After the JAMA Review

by John W. Addington

02-06-2002

An extensive review of medical studies on CFS therapies published last September in the Journal of the American Medical Association (JAMA) has caused somewhat of a stir. Of the thirty-one different therapies included in the review, only cognitive behavioral therapy (CBT) and graded exercise therapy (GET) were determined to be of much benefit. Many CFS advocates are alarmed by how this conclusion could be interpreted. Nonetheless, the benefits of the reviewers' exposé of the shortcomings of CFS research generally may well outweigh any potential harm from the article.

Review Conclusions

The JAMA review used stringent scientific standards to
determine which studies were even worth considering. Because
of this the majority of studies initially assessed were excluded. In
fact, out of the 350 studies first identified, only 44 were found
worthy to be included in the review.

Besides CBT and GET, the studies reviewed included various
treatments targeting either the immune system disturbances,
hormone imbalance, or faulty brain signals. Trials involving
alter-native therapies including various supplements,
homeopathic remedies and massage therapy were also
assessed.

Only CBT and GET, however, were described by the authors as
having "shown promise." This is because more than one study
for each of these treatments showed similar positive results.
Immu-noglobulins and hydrocortisone were described as having
"shown some limited effects but for which overall evidence
is inconclusive." Besides these, essential fatty acids,
magnesium, NADH, and massage therapy all showed overall
beneficial effects, but only in one study each.

Shortcomings of CFS Research

Perhaps the greatest benefit of the JAMA review, however, is
what it teaches about the problems with CFS research. The
reviewers forthrightly confessed to numerous shortcomings in
this area. For instance, that so many studies had to be excluded
shows that consistent criteria and methods for trials are not
being used by all CFS investigators.

Another issue that worked against fair comparisons in the
studies was the varied case definitions used to establish
whether the participants actually had CFS. For the majority of
studies re-viewed, 4 different primary definitions for CFS were
involved. A few studies, however, used various other diagnostic
criteria for having the ailment. Also patients with varying levels of
se-verity were used in the studies, and often the sickest were
excluded because of their inability to travel to the clinic hosting
the trial. Thus it cannot be said with certainty that all patients in
the studies even suffered from the same disorder.

Additionally since there is no consensus as to a cause for CFS,
treatments involved did not uni-formly target one particular body
system (hormones, immune system, etc.). Similarly with no
agreed clear biological marker, the myriad symptoms of the
ailment were variously used as ba-rometers of improvement.
Thus for the studies reviewed 38 different symptom outcomes
were used. And if that is not bad enough, the scale or
measurements of improvement also varied greatly for any given
symptom studied.

Another shortcoming of CFS clinical trials evidenced by this
review is the inconsistencies in treatment duration and follow-up
periods. In the studies appraised, the period of treatment varied
from 2 weeks to 1 year. Likewise, the follow-up periods in the
studies varied from 2 weeks to several months; seldom ever was
there a follow-up time as long as one year.

Given the irregular nature of symptom severity, the authors of this
review found the shorter fol-low-up periods particularly
troublesome. They explain, "The relapsing nature of CFS
suggests that follow-up should continue for at least an
additional 6 to 12 months after the [treatment] pe-riod has
ended, to confirm that any improvement observed was due to the
[treatment] itself and not just to a naturally occurring fluctuation in
the course of the illness."

Because of the large variations existing in CFS therapeutic
trials, no large pool of evidence exist for any one treatment or
symptom. Noting this and other difficulties encountered, the
JAMA re-viewers state, "There is a need for standard outcome
measures to be used in trials evaluating [therapies] for CFS
so that results can be meaningfully compared across studies."

Misinterpreting the CBG/GET Findings

CFS advocates fear this survey could have unintended but
negative consequences. That CBT and GET were found to be
the most successful may be interpreted by some that CFS has a
psycho-logical not physical cause. Thus doctors could feel their
suspicions are confirmed; the problems of CFS patients lie in
their heads. Yet Dr. Simon Wessley wrote in an accompanying
article in the same issue of JAMA, that, "such views are
misguided."

Commenting further on the review, Dr. Wessley cautioned that
"neither approach of [CBT or GET] is remotely curative" and thus
researchers should "continue their efforts to develop better
treatments." On the topic of CBT as a therapy for CFS, Dr.
Anthony Komaroff explains "'It helps people cope with the
illness, but it's not curative." CBT should thus be viewed as one
means to help manage the symptoms and not an attempt to treat
the cause of the ailment. In a similar vein, CBT has shown to be
of benefit for the care of patients with heart disease and multiple
sclerosis, despite the physical nature of these ailments.

In an earlier issue of JAMA last year, Dr. Benjamin Natelson also
discussed the positive out-comes in the use of CBT for CFS. He
said that "this does not mean that CFS is necessarily
psy-chological in origin. For instance, CBT can improve the
symptoms of patients with other chronic diseases such as
rheumatoid arthritis."

Dr. Natelson also explained that "CBT is not always effective in
treating CFS." This may be sub-stantiated by findings in the
JAMA review of CFS studies. The researchers noted high
drop-out rates in the CBT trials. Although the reasons for patient
withdrawals from the trials were not clear, it could be that
the treatment did not work or worsened their symptoms.

Kim Kenny the president of the CFIDS Association of American
has commented on how CBT can exacerbate some patients'
condition. She says, "behavioral therapy has the potential to
cause severe relapses, especially when not administered by
skilled professionals." Noting this concern Dr. Wessley warned
that "the skilled CBT practitioners who delivered the
interventions that … have been shown to provide benefit in the
clinical trial setting must not be replaced by enthusias-tic
amateur therapists."

Kenny details another issue she has with the review. "Inferring
from this paper that exercise, as the general public understands
it-such as 'hitting the gym'-may help CFS patients would be a
se-rious mistake." Rather the exercise found beneficial in the
studies is carefully tailored to each individual, slowly increased
as can be tolerated without harm, and orchestrated under
the care of a skilled therapist.

With these concerns in mind, hopefully the JAMA review will
make a positive impact on the quality of CFS research, without
bringing harm to patients. As simply put by the CFIDS
Asso-ciation of America, the review "highlights the need for
more and better CFS research."

Sources:

Behavioral Therapies Are No Cure for Chronic Fatigue
Syndrome, CFIDS Association of America Press Release
(Sept. 19, 2001)

Chronic Fatigue Syndrome - How To Treat It?, National
Electronic Library for Health, National Health Service (NHS)
(Sept. 25, 2001) http://www.nelh.nhs.uk/hth/fatigue.asp

Defining and Managing Chronic Fatigue Syndrome, Evidence
Report/Technology Assessment: Number 42, Agency for
Healthcare Research and Quality (Sept. 2001)
http://www.ahcpr.gov/clinic/epcsums/cfssum.htm

JAMA Study May Be Misleading: Behavioral Therapies No Cure
for CFS, CFIDS Association of America,
http://www.cfids.org/archives/2001-rr4-article01.asp

Report on CFS Treatment is Misleading and Potentially Harmful,
U.S. Newswire (Sept. 20, 2001)
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0109D&L=co-cure&P=R641

Natelson, B., Chronic Fatigue Syndrome, JAMA
285(20):2557-2559 (May 23/30, 2001)

Sherman, N., Chronic Fatigue: Do Sweat It, Healthscout (Sept.
20, 2001)
http://www.healthscout.com/template.asp?page=newsdetail&ap=1&id=501705

Tanner, L., Behavior Therapies May Help Fatigue, Associated
Press (Sept. 18, 2001)
http://dailynews.yahoo.com/h/ap/20010918/hl/chronic_fatigue_1.html
Wessely S. Chronic fatigue syndrome: trials and tribulations,
JAMA, 286(11):1378-1379 (Sept. 19, 2001)

Whiting P, et. al, Interventions For The Treatment And
Management of Chronic Fatigue Syndrome: A Systematic
Review, JAMA, 286(11):1360-1368
(Sept. 19, 2001)

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