"Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome"-Bell et al, 2001

[Dolphin]

This is a 2001. I just read it but my point on recovery may not be very exciting for many.

Anyway, full text is free here: http://128.121.104.24/Bell.pdf

Pediatrics. 2001 May;107(5):994-8.
Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome.
Bell DS, Jordan K, Robinson M.

• Primary Care Pediatrics, Lyndonville, New York, USA.

Abstract*

OBJECTIVE:

To describe the educational, social, and symptomatic outcome of children and adolescents with chronic fatigue syndrome 13 years after illness onset.

METHODS:

Between January 1984 and December 1987, 46 children and adolescents developed an illness suggestive of chronic fatigue syndrome.

Follow-up questionnaires were obtained from 35 participants an average of 13 years after illness onset.

Data were obtained concerning subsequent medical diagnoses, amount of school missed, presence and severity of current symptoms, and subjective assessment of degree of illness resolution.

RESULTS:

Of the 35 participants, 24 were female (68.6%) and 11 were male (31.4%).

Average age at illness onset was 12.1 years. Eight participants (22.9%) had an acute onset of symptoms, 27 (77.1%) had a gradual onset.

No participant received an alternative medical diagnosis that could have explained the symptom complex between illness onset and follow-up.

Thirteen participants (37.1%) considered themselves resolved of illness at follow-up; 15 participants (42.9%) considered themselves well but not resolved; 4 (11.4%) considered themselves chronically ill; and 3 (8.6%) considered themselves more ill than during the early years of illness.

Correlation with the Medical Outcomes Study Short Form Health Survey was good for current level of symptoms and degree of recovery.

Eight participants (22.9%) missed >2 years of school, and 5 of these were still ill at follow-up.

Amount of school missed correlated with both illness severity at follow-up and perceived social impact of the illness.

CONCLUSIONS:

These data demonstrate the presence of an illness consistent with the current definition of chronic fatigue syndrome.

Eighty percent of children and adolescents affected had a satisfactory outcome from their fatiguing illness, although the majority of these participants had mild to moderate persisting symptoms.

Twenty percent of participants remain ill with significant symptoms and activity limitation 13 years after illness onset.

Chronic fatigue syndrome in children and adolescents may result in persistent somatic symptoms and disability in a minority of those affected.

PMID:

11331676

[PubMed - indexed for MEDLINE]

*I gave each sentence its own paragraph

 

[Dolphin]

I've seen this paper summarised that 80% recovered. However, the details are quite a bit different.

As the abstract effectively says, participants had four options:

1. Current health assessment with 4 answer options:
“I have recovered completely and feel entirely well,”
“I have never recovered completely but feel pretty well,”
“I recovered somewhat but remain ill,”
and
“I am more ill than I was 10 years ago.”

Among other things they were asked:

6. Visual analog score (0 = none; 10 = very severe) indicating present severity of 12 symptoms seen in CFS (fatigue, sore throat, lymph node tenderness, eye pain and/or light sensitivity, abdominal discomfort, headache, depression, muscle pain, memory and/or attention problems, sleep disturbance, dizziness and/or lightheadedness, and joint pain).

The VAS scores of the recovered groups demonstrated quite large variations:

The VAS scores used in data analysis were the sum of 12 symptom-specific scores graded from 0 (no symptom) to 10 (very severe symptom). In general the VAS sums correlated to degree of recovery in those participants who had “completely recovered,” and those who were “more ill than at onset,” with average scores being 15.4 for the former group and 74.7 for the latter. The 2 middle groups displayed considerable overlap with scores for “never recovered completely but feel pretty well” ranging from 17 to 87, and “recovered somewhat but remain ill,” ranging from 45 to 93.

Also

The lifestyle variation is the most difficult factor to analyze in studies attempting to address the natural history of unexplained chronic fatigue. We compared perceived illness outcome (by questionnaire and SF-36) with specific symptom severity (VAS scores). CFS is characterized by somatic symptoms that may vary in severity but persist over time. Nine participants reported complete resolution of illness and had VAS scores below 25 as would be expected in complete recovery. Four participants reporting illness resolution had VAS sums ranging from 28 to 48, indicating mild symptomatology. Of those participants considering themselves “never recovered completely but pretty well,” 2 had low VAS sums between 10 and 19, 6 had moderate VAS sums between 25 and 49, and 5 had high VAS sums between 50 and 87. Two participants did not record VAS scores with 1 expressing health identity confusion by writing in the margin of the questionnaire, “The survey is hard to answer because. . . I was so young when I became ill, I do not know if I am a well person, or a person who thinks he is well but doesn’t know what well really is.” Thus, perception of complete illness resolution and low VAS scores suggesting minimal, if any, symptoms were reported in only 25.7% of the entire group. This wide variation in somatic discomfort has been the cause of the difficulty in assessing overall outcome in CFS and needs additional clarification.

A recovery rate of 25.7% is a lot different to 80%.

Such lack of full recovery was found in a recently published (well, in 2012) 25-year follow-up study on the same cohort: http://forums.phoenixrising.me/inde...m-outcomes-of-chronic-fatigue-syndrome.18193/.

 

[taniaaust1]

Two participants did not record VAS scores with 1 expressing health identity confusion by writing in the margin of the questionnaire, “The survey is hard to answer because. . . I was so young when I became ill, I do not know if I am a well person, or a person who thinks he is well but doesn’t know what well really is.

I think that person had a very important point. Those who have been sick from children may not even know what it feels like to be well. Hence questionaires to try to work out how people are doing, may not at all give accurate indications.

This study thou showed some important things eg something Ive always believed, that being the sicker one is in the early years.. the more severe this illness may be for the person and the harder it may be to overcome and find a way to get well.

 

[*GG*]

Here is more info, from MA CFIDS:

http://www.masscfids.org/resource-library/3/309

GG

 

[SOC]

I think that person had a very important point. Those who have been sick from children may not even know what it feels like to be well. Hence questionaires to try to work out how people are doing, may not at all give accurate indications.

This study thou showed some important things eg something Ive always believed, that being the sicker one is in the early years.. the more severe this illness may be for the person and the harder it may be to overcome and find a way to get well.

My daughter says something similar. She's been ill since she was 12yo. She feels she can't really judge if she's truly feeling well and normally energetic because she doesn't remember what being fully well feels like. She's comfortable saying she's fully functional because she works a normal schedule, socializes as much as she wants, doesn't get PENE when she increases her activity. But is she well? Does she feel as energetic as other people her age? She can't tell. Kinda sad.

 

[Valentijn]

If they aren't sure if they're well because they don't know what it felt like, then they aren't well. They'd know it if they felt it.

 

[SOC]

If they aren't sure if they're well because they don't know what it felt like, then they aren't well. They'd know it if they felt it.

I suspect you are right. That is one of the reasons we don't believe my daughter is cured. Fully functional maybe, but not cured. I dunno wth "recovered" means, so we don't use that either.