Understanding Long-Term Outcomes of CFS

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Source: Co-cure

Note: This is an area that is rarely taken beyond a 36-month follow-up

- with prognosis generally poor given the lack of highly effective

treatments easily available. The vast majority of individuals who

develop CFS do not attain a premorbid level of functioning according

to the literature. In a 10-year follow-up of 24 patients with CFS,

, Porter, et al. (2011) found that 67% maintained a diagnosis of

CFS. Those authors also found that only one participant out of the

original 24 with CFS was considered to be in remission (i.e., did not

have 6 or more months of fatigue) at follow-up. It is often stated

that children and adolescents have a better prognosis, yet in a

13-year follow-up of 35 youths who developed illness suggestive of CFS

between 1984 and 1987, Bell, Jordan, and (2001) found that

only 37% reported complete recovery, and 20% remained very ill and

disabled.

These authors state that illness adaptation may create difficulty in

interpreting the meaning of recovery from CFS. For example, in Bell et

al.'s (2001) study, 80% of the children and adolescents who became ill

considered themselves " well " at follow-up. However, of those 80%, half

had ongoing somatic symptoms, while the other half had minimal or no

somatic symptoms.

This study follows a group of patients from the original Lyndonville

NY outbreak. Because the case definition for ME and CFS was very much

in flux in the late 1980s these patients were diagnosed using a

slightly different criteria, but it adhered to the main tenets of the

Holmes and Fukuda case definitions.

Caveats: It is a small study. This may be because of lack of access

over such a long period of time. As well the authors acknowledge the

data presented are cross sectional, providing less conclusive evidence

about CFS prognosis than longitudinal studies. Also, in using

self-reported CFS diagnoses it is possible that some participants

remained ill but did not maintain a diagnosis because of a lack of

access to healthcare or uncertainty about their diagnosis. This

specific study does not discuss whether there could be a difference

between patients identified from an outbreak vs.sporadic illness.

Understanding Long-Term Outcomes of Chronic Fatigue Syndrome

Journal of Clinical Psychology

Molly M. Brown1, S. Bell, Leonard A. , Constance Christos,

E. Bell

Objective

This study sought to examine long-term health, symptom, and disability

outcomes among patients with chronic fatigue syndrome (CFS) by

comparing those diagnosed with CFS 25 years ago with healthy controls.

Method

Of the 25 participants diagnosed with CFS 25 years ago, 5

self-reported that they maintained a diagnosis of CFS, while 20

reported no longer having a diagnosis. These two groups were compared

with healthy controls on outcomes related to functioning and symptom

severity.

Discussion

This study sought to gain a better understanding of functioning among

patients with CFS who have been ill for about 25 years. Across all

outcomes, other than the Mental Health subscale of theMOS SF-36, the

persist group demonstrated more impairment than the control group.

This finding highlights the sweeping debilitating nature of CFS across

a number of domains such as physical and emotional difficulties,

specific symptoms, pain, and sleep quality. Moreover, it appears that

individuals who maintain a diagnosis of CFS for more than two decades

continue to report a high level of disability, as participants in this

study scored at least one standard deviation below general population

means across all MOS SF-36 subscales except for MentalHealth

(on, Coulter, & , 1993).

Perhaps the most important findings in this study pertain to the remit

group, which accounted for 80% of the 25CFS participants.Given the

duration of the follow-up, itwould be expected that

the remit groupwould demonstrate comparable functioning to a group of

healthy individuals.Yet this group had significantly more impairment

than controls on 21 of the 23 outcomes evaluated.

Thus, while people who no longer meet full criteria for CFS would be

considered recovered by some standards, these individuals likely do

not attain their premorbid level of functioning.

Another important finding with regard to the remit group is that on 17

of the 23 outcomes tested, their scores were not significantly

different from those of the persist group, suggesting that the remit

group maintained a similarly high level of disability.

Results

Those who remitted from CFS showed significantly more impairment on 21

out of 23 outcomes compared with controls. On 17 outcomes, those who

remitted had nonsignificant differences in impairment compared to

those who maintained a CFS diagnosis.

Conclusions

Findings from this study suggest that over time many individuals will

not maintain a CFS diagnosis but will not return to their premorbid

level of functioning. Those individuals

who considered themselves as no longer impaired by CFS were more

disabled and symptomatic than controls who had never been diagnosed

with CFS. Despite no longer maintaining the diagnosis of CFS, this

group failed to return to normal levels of functionality at baseline.

Future longitudinal research is needed to examine long-term CFS

outcomes in larger representative samples, utilizing a more recent

case definition. In subsequent follow-up studies,

the inclusion of biological markers implicated in this illness would

augment previous self-report studies. Findings from this study

underscore the chronicity of adolescent CFS and the need for effective

medical treatments.

Article first published online: 29 JUN 2012