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Subtyping Patients with ME and CFS By Course of illness (Dr Jason and team)

Dolphin

Senior Member
Messages
17,567
Dr Bell said a few years ago that his long time patients who believed they were 'back to normal' were not recovered but they simply learnt to live within their limitations.
J Clin Psychol. 2012 Sep;68(9):1028-35. doi: 10.1002/jclp.21880. Epub 2012 Jun 29.
Understanding long-term outcomes of chronic fatigue syndrome.
Brown MM1, Bell DS, Jason LA, Christos C, Bell DE.
Author information

Abstract
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.

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.

© 2012 Wiley Periodicals, Inc.
 

Dolphin

Senior Member
Messages
17,567
Illness Course Groups Participants were placed in one of five illness course groups based upon their response to an item asking about the progression of their illness. This item provided the choice of five labels: “constantly getting worse,”“constantly improving,”“persisting (no change),”“relapsing and remitting (having ‘good’ periods with no symptoms alternating with symptomatically ‘bad’ periods),” and “fluctuating (symptoms periodically get better and get worse, but never disappear completely).”
I would question whether that many truly have no symptoms. I suspect like with the Brown et al study, patients may have just got accustomed to their symptoms and so don't notice them if they're not too bad.
 

Dolphin

Senior Member
Messages
17,567
More a technical point than something I find that exciting but this is probably true:
Items on the DSQ ask participants to rate the frequency and severity of their symptomatology over the past 6 months. Likewise, items on the SF-36 ask participants to rate their levels of functioning on a “typical day” over the past four weeks. The format of these items proves especially problematic for assessing the experiences of those within the Fluctuating and Relapsing and Remitting groups. As the nature of these groups’ illness course involves a variation in symptoms over time, when asking them to average their functioning and symptomology over time, we fail to capture a complete appreciation for the patterns of their illness.
 
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Dolphin

Senior Member
Messages
17,567
Conclusions

These preliminary findings demonstrate that illness course subtypes can account for significant differences in the experiences of patients with CFS and ME. The severity and frequency of symptoms, levels of functioning, and utilization of energy were shown to differ significantly between illness course subtypes. Continuing to explore and develop the illness course classification approach is an important step in furthering treatment and research for this debilitating illness. Not only will this lead to a more nuanced understanding of treatment efficacy and prognosis, but it will allow researchers to consistently categorize patients by illness subtype increasing the specificity of their research. This would likely ultimately lead to more consistent findings within the field.
This could well be true. But I would feel more confident about if it used objective measures. There seems potential for people to report their impairments, symptoms, etc. differently based on how they see their illness progressing. Alternatively possibly, though I am less sure of this, people with different levels of functioning or symptoms might report how their illness is progressing in different ways.