Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service, 2019, Rowe

I have been in touch with Dr Kathy Rowe, the sole author of the study, who was really helpful in providing additional information. Several points she mentioned are worth sharing (with permission):


1. To count as recovered, patients both had to say there were recovered and to specify how long their illness had lasted (answers given in reply to two separate questions).


2. Patients were also asked if they had had recurrence of symptoms. About 10% did, in the final stage before they recovered, almost always a symptom flare following an infection. Rowe reported that many recovering patients started to get infections more frequently as their health improved (this phenomenon has also been reported elsewhere). However, in almost all cases the recurrence of symptoms was only temporary (i.e. this is recovery not remission).


3. Rowe also said that some patients' classification of themselves as recovered partly depended on their approach to life, particularly among those who scored 8 or 9/10. The paper itself said similar.

Rowe also said that this didn't apply to those scoring 10/10, who were all mailed on. And that most of those who scored less than 8 would doing so for reasons they regarded as unrelated to ME/CFS, particularly anxiety or depression.


My interpretation of the final points is that the true rate of recovery would be below the headline figure. I'd suggested in my earlier post that the long term rates (10 year + follow-up) might be perhaps 50% or so, rather than the 68% figure. That is an interpretation, but, particularly after the discussion I had with Dr Rowe, I think this large study of the very high follow-up rate still demonstrates a very substantial recovery rate.
 
Simon M said:
I have been in touch with Dr Kathy Rowe, the sole author of the study, who was really helpful in providing additional information. Several points she mentioned are worth sharing (with permission):


1. To count as recovered, patients both had to say there were recovered and to specify how long their illness had lasted (answers given in reply to two separate questions).


2. Patients were also asked if they had had recurrence of symptoms. About 10% did, in the final stage before they recovered, almost always a symptom flare following an infection. Rowe reported that many recovering patients started to get infections more frequently as their health improved (this phenomenon has also been reported elsewhere). However, in almost all cases the recurrence of symptoms was only temporary (i.e. this is recovery not remission).


3. Rowe also said that some patients' classification of themselves as recovered partly depended on their approach to life, particularly among those who scored 8 or 9/10. The paper itself said similar.

Rowe also said that this didn't apply to those scoring 10/10, who were all mailed on. And that most of those who scored less than 8 would doing so for reasons they regarded as unrelated to ME/CFS, particularly anxiety or depression.


My interpretation of the final points is that the true rate of recovery would be below the headline figure. I'd suggested in my earlier post that the long term rates (10 year + follow-up) might be perhaps 50% or so, rather than the 68% figure. That is an interpretation, but, particularly after the discussion I had with Dr Rowe, I think this large study of the very high follow-up rate still demonstrates a very substantial recovery rate.
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This is good news.
However given that we have in UK advice that suggests or states that most recover ( 80% +), it should be a priority for charities and researchers to acknowledge this and for information provided to young people and their families to more accurately depict prognosis.
@Action for M.E. @Russell Fleming @EspeMor
 
@Simon M
1. Can we compare this data to Crawley work?
2. This paper plus Rowe/ Speight suggests that slow recovery over 5+ years
is within "normal limits". Is the UK trying to rush the process with active intervention?
 
Amw66 said:
However given that we have in UK advice that suggests or states that most recover ( 80% +), it should be a priority for charities and researchers to acknowledge this and for information provided to young people and their families to more accurately depict prognosis.
@Action for M.E. @Russell Fleming @EspeMor
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Quite right. Our latest info clearly states that recovery is rare, in the context of all pwME. See more here and here
 
I've submitted a comment to this article, but it has been rejected by Frontiers in Pediatrics (it did not meet the article type criteria).

My comment was written and submitted before Simon McGrath's remarks, who raised some similar issues.

I had some problems with the high recovery rates reported in this study because of three reasons :

(1) The authors simply asked if patients were recovered, they did not make a composite definition out of the measures they had available. Although all these outcomes showed convincing improvement, I suspect the recovery rates would be lower if they were combined.

(2) There are reasons to believe patients might have overestimated their recovery from ME/CFS as was the case in the study by Bell et al.

(3) The authors say they recorded relapses but it's not clear how this information was used or relates to recovery rates. It would be interesting to know how many claimed recovery at one-time point but relapsed years later.​

I agree with the conclusion that prognosis seems relatively good in adolescent patients an that most made significant improvements. But I would like researchers to be more careful with the word 'recovery.'
 

Commentary: Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service

In an impressive follow-up study of 784 young people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), K.S. Rowe reports recovery rates of up to 68%. [1] This is much higher than previously reported. Bell et al. found that only a third of young ME/CFS patients reported recovery 13 years after illness onset. [2] There are several reasons why recovery rates in ME/CFS could be overestimated.

In a critical review, Adamowicz et al. concluded that recovery in ME/CFS is often based on a limited assessment of a singular outcome. [3] Multi-domain assessments might give a more accurate indication of recovery. Knoop et al. [4] reported recovery rates of 59–66% when a single outcome such as fatigue or physical function was assessed but when several outcomes were combined the recovery rate decreased to 23%. In the study by Rowe, no precise definition of recovery is given. It seems mostly based on the singular question: “Do you feel you are no longer suffering from CFS?” Since data on functional status and school and work resumption were also reported, it would be interesting to see how recovery rates differ if multiple assessments are combined.

Bell et al. found that young ME/CFS patients reporting recovery still had ongoing somatic symptoms. [2] Although patients claimed to be recovered, they had more impairment on 21 out of 23 outcomes than healthy controls. [5] Patients might have adapted to their symptoms and regard their long-lasting disability as a new normal. Several elements indicate this might be the case for patients who reported recovery in Rowe’s study. Some said they found the concept of recovery difficult; they did not know what normal was because it had been so long since they were last well. Others said they were well but were contradicted by their parents who were less optimistic about their health. There was also a significant overlap in the global functioning scores of those who reported recovery and those who did not. Approximately 30% of those reporting recovery, had a score equal to or lower than 8. This means the patient rarely feels refreshed, has periods with symptoms and occasionally needs a day to recover. Such a description contrasts with how ME/CFS expert clinicians define recovery, namely a “complete symptom remission”. [6]

Since ME/CFS has been described as a relapsing illness [7], it’s unclear if a return to full functioning should be interpreted as a recovery or a temporary remission. In a recent study, Chu et al. found that nearly ten percent of ME/CFS patients experienced a complete cessation of their symptoms even though their ME/CFS recurred. [8] 28% of the participants in Rowe’s study described their pattern of illness as relapsing. According to the author, there were multiple assessments allowing documentation of relapses. It would be interesting to see data on the percentage of ME/CFS patients who reported recovery but suffered a relapse, years afterward. Nisenbaum et al. tested this idea. They assessed patients at 3 different follow-ups, each one year apart. [7] While more than half of ME/CFS patients experienced a remission, only one-tenth sustained total remission at multiple follow-ups. This indicates caution is advised in claiming recovery in ME/CFS.

References

[1] Rowe K. Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service. Front. Pediatr. 2019. https://doi.org/10.3389/fped.2019.00021

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

[3] Adamowicz JL, Caikauskaite I, Friedberg F. Defining recovery in chronic fatigue syndrome: a critical review. Qual Life Res. 2014 Nov;23(9):2407-16.

[4] Knoop H, Bleijenberg G, Gielissen MF, van der Meer JW, White PD. Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? Psychother Psychosom. 2007;76(3):171-6.

[5] Brown MM, Bell DS, Jason LA, Christos C, Bell DE. Understanding long-term outcomes of chronic fatigue syndrome. J Clin Psychol. 2012 Sep;68(9):1028-35.

[6] Devendorf AR, Jackson CT, Sunnquist M, A Jason L. Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective. Disabil Rehabil. 2019 Jan;41(2):158-165.

[7] Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population-based study of the clinical course of chronic fatigue syndrome. Health Qual Life Outcomes (2003) 1:49. doi: 10.1186/1477-7525-1-49

[8] Chu L, Valencia IJ, Garvert DW, Montoya JG. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front. Pediatr. 2019. https://doi.org/10.3389/fped.2019.00012
 
Michiel Tack said:
Commentary: Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service

In an impressive follow-up study of 784 young people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), K.S. Rowe reports recovery rates of up to 68%. [1] This is much higher than previously reported. Bell et al. found that only a third of young ME/CFS patients reported recovery 13 years after illness onset. [2] There are several reasons why recovery rates in ME/CFS could be overestimated.

In a critical review, Adamowicz et al. concluded that recovery in ME/CFS is often based on a limited assessment of a singular outcome. [3] Multi-domain assessments might give a more accurate indication of recovery. Knoop et al. [4] reported recovery rates of 59–66% when a single outcome such as fatigue or physical function was assessed but when several outcomes were combined the recovery rate decreased to 23%. In the study by Rowe, no precise definition of recovery is given. It seems mostly based on the singular question: “Do you feel you are no longer suffering from CFS?” Since data on functional status and school and work resumption were also reported, it would be interesting to see how recovery rates differ if multiple assessments are combined.

Bell et al. found that young ME/CFS patients reporting recovery still had ongoing somatic symptoms. [2] Although patients claimed to be recovered, they had more impairment on 21 out of 23 outcomes than healthy controls. [5] Patients might have adapted to their symptoms and regard their long-lasting disability as a new normal. Several elements indicate this might be the case for patients who reported recovery in Rowe’s study. Some said they found the concept of recovery difficult; they did not know what normal was because it had been so long since they were last well. Others said they were well but were contradicted by their parents who were less optimistic about their health. There was also a significant overlap in the global functioning scores of those who reported recovery and those who did not. Approximately 30% of those reporting recovery, had a score equal to or lower than 8. This means the patient rarely feels refreshed, has periods with symptoms and occasionally needs a day to recover. Such a description contrasts with how ME/CFS expert clinicians define recovery, namely a “complete symptom remission”. [6]

Since ME/CFS has been described as a relapsing illness [7], it’s unclear if a return to full functioning should be interpreted as a recovery or a temporary remission. In a recent study, Chu et al. found that nearly ten percent of ME/CFS patients experienced a complete cessation of their symptoms even though their ME/CFS recurred. [8] 28% of the participants in Rowe’s study described their pattern of illness as relapsing. According to the author, there were multiple assessments allowing documentation of relapses. It would be interesting to see data on the percentage of ME/CFS patients who reported recovery but suffered a relapse, years afterward. Nisenbaum et al. tested this idea. They assessed patients at 3 different follow-ups, each one year apart. [7] While more than half of ME/CFS patients experienced a remission, only one-tenth sustained total remission at multiple follow-ups. This indicates caution is advised in claiming recovery in ME/CFS.

References

[1] Rowe K. Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service. Front. Pediatr. 2019. https://doi.org/10.3389/fped.2019.00021

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

[3] Adamowicz JL, Caikauskaite I, Friedberg F. Defining recovery in chronic fatigue syndrome: a critical review. Qual Life Res. 2014 Nov;23(9):2407-16.

[4] Knoop H, Bleijenberg G, Gielissen MF, van der Meer JW, White PD. Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? Psychother Psychosom. 2007;76(3):171-6.

[5] Brown MM, Bell DS, Jason LA, Christos C, Bell DE. Understanding long-term outcomes of chronic fatigue syndrome. J Clin Psychol. 2012 Sep;68(9):1028-35.

[6] Devendorf AR, Jackson CT, Sunnquist M, A Jason L. Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective. Disabil Rehabil. 2019 Jan;41(2):158-165.

[7] Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population-based study of the clinical course of chronic fatigue syndrome. Health Qual Life Outcomes (2003) 1:49. doi: 10.1186/1477-7525-1-49

[8] Chu L, Valencia IJ, Garvert DW, Montoya JG. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front. Pediatr. 2019. https://doi.org/10.3389/fped.2019.00012
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