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Reports of recovery in chronic fatigue syndrome may present less than meets the eye

  [ 2 votes ]   [ 3 Comments ]
By Fred Friedberg, Jenna Adamowicz • www.ProHealth.com • August 12, 2014


Reports of recovery in chronic fatigue syndrome may present less than meets the eye

By Fred Friedberg and Jenna Adamowicz

WHAT IS ALREADY KNOWN ON THIS TOPIC?

The definitions of recovery in chronic fatigue syndrome (CFS) are numerous, as are the amount of intervention and naturalistic studies designed to assess illness recovery.1 In a recent systematic review of 22 studies, recovery percentages ranged from 0% to 66%.1 White et al report a recovery rate of 22% to 23% in their active behavioural intervention conditions. This rate corresponds with findings of a previous intervention study in CFS that used similar recovery criteria. 2

WHAT THIS PAPER ADDS?

  • A controlled comparison of three recognised behavioural interventions for CFS incorporating an unusually large sample (thus, greater power) in comparison to previous clinical trials.

  • The use of multiple case definitions of CFS with varying criteria to assess clinical recovery. Thus, the percentage of patients who no longer met full illness criteria can be determined with reference to several definitions, rather than just one.

  • Operationalised criteria for recovery that include both symptom and functional changes as  informed by population data. Such precise criteria make clear how recovery is defined and facilitate cross-study comparisons.

LIMITATIONS

  • The absence of data on patients’ perceptions of their recovery status and their pre-morbid functioning, both of which could inform the extent of recovery. Population norms may not capture health restoration if an individual’s pre-morbid function was superior to his or her post-treatment improvements.

  • The qualification acknowledged by the authors of this study that ‘recovery’, their central construct, refers only to recovery from the current episode, rather than sustained recovery over long periods.

  • We would argue that ‘remission’ is a more accurate term—which the authors appear to agree with. This term is less prone to misinterpretation and exaggeration.

  • The lack of available behavioural treatment for most patients with CFS indicates that the recovery emphasis in this paper has little real-life impact on patient quality of life beyond the research setting.

WHAT NEXT IN RESEARCH?

Recovery in CFS should be more broadly defined, with reference to patients’ pre-morbid functioning and their perceptions of their recovery status. Also, sustainability of recovery (as opposed to shorter term remission) over longer periods (5+ years) should be investigated.

Common understandings of recovery as a full return to health may not be applicable to outcome studies where criteria indicate remission rather than sustained recovery. Health services research is needed to incorporate behavioural interventions for CFS into clinical care.

DO THESE RESULTS CHANGE YOUR PRACTICES AND WHY?

These findings are unlikely to change the author’s practices as the recovery definitions and rates presented replicate previous reports from behavioural intervention studies in CFS. It is important to recognise that a recovery rate below 25%, even if accepted as a full or nearly full restoration of health (a questionable assumption), still leaves the vast majority of these patients with significant symptoms and impairments. Yet the publicity generated by trumpeting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in behavioural treatment research.3

Competing interests: None.
doi:10.1136/eb-2013-101652

REFERENCES

1. Adamowicz J,Caikauskaite I, Friedberg F. Defining recovery in chronic fatigue syndrome: a critical review.Qual Life ResIn press.

2. Deale A,Husain K, Chalder T,et al. Long-term outcome of cognitive behavior therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study.Am J Psychiatry2001;158:2038–42.

3. Price JR,Mitchell E, Tidy E,et al. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev2008;(3):CD001027

Commentary on:

ABSTRACT FROM: White PD, Goldsmith K, Johnson AL,et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychol Med. 2013;43:2227–35.

Patients: Six hundred and forty-one people (mean age 38 years) meeting Oxford criteria for chronic fatigue syndrome (CFS).

Setting: Six secondary care CFS clinics in England and Scotland; study duration not reported.

Intervention: Four treatment strategies were assessed: specialist medical care (SMC) delivered by specialist CFS doctors (n=160); SMC plus adaptive pacing therapy (APT) delivered by occupational therapists (n=159); SMC plus cognitive behavioral therapy (CBT) delivered by clinical psychologists
(n=161); and SMC plus graded exercise therapy (GET) delivered by physiotherapists (n=160).

Comparison: Between-arm comparisons: GET vs SMC, GET vs APT, CBT vs SMC, CBT vs APT and APT vs SMC (CBT vs GET not analysed) Follow-up 95% had primary outcome data at 52 weeks follow-up.

Dropout did not alter significantly by treatment group.

Allocation: Not reported

Blinding: Not reported

OUTCOMES: Recovery at 52 weeks (composite measure of normal range of fatigue, normal range of physical function, not meeting Oxford criteria of CFS, and Clinical Global Impression (CGI) score of 1 or 2):

Recovery at 52 weeks was achieved by 11 (7%) patients in the SMC alone group (95% CI: 4 to 13); 43 (28%) patients in the GET plus SMC group (95% CI: 16 to 30), number needed to treat (NNT): 7; 32 (22%) patients in the CBT plus SMC group (95% CI: 16 to 30; NNT: 7); 12 (8%) patients in the APT plus SMC group (95% CI: 4 to 14).

Patients randomised to GET plus SMC had significantly higher odds of recovery compared to SMC alone (OR: 3.71; 95% CI: 1.78 to 7.74) or APT plus SMC (OR: 3.38, 95% CI: 1.65 to 6.93). Patients randomised to CBT plus SMC had significantly higher odds of recovery compared to SMC alone (OR: 3.69; 95% CI: 1.77 to 7.69) or APT plus SMC (OR: 3.36; 95% CI: 1.64 to 6.88). There were no significant differences between the APT plus SMC group and SMC alone (OR: 1.10; 95% CI: 0.47 to 2.58).

Source: Fred Friedberg, Jenna Adamowicz. Psychological interventions: Reports of recovery in chronic fatigue syndrome may present less than meets the eye. Evid Based Mental Health doi:10.1136/eb-2013-101652



Please Discuss This Article:   Post a Comment 

Recovered CFS/ME sufferer
Posted by: Mazzza
Aug 13, 2014
I read with some interest the article that recovery of CFS sufferers may be less than meets the eye.

I am a recovered CFS (CFS/ME) sufferer and have written a book which can be found on my website: www.mariannegutierrez.com

I am a sustained recoverer too! It is not rocket science and my recovery follows the thinking of many therapists and health professionals.

The problem is that the medical profession is so well versed in the science of medical drugs that they do not consider what a human body needs to function. They look for a drug to reduce some symptoms of an illness not if the body is nutritionally deficient. The body needs Food. Nutrients. Movement. Balanced thinking. So it isn't any wonder that what made me well was: Good Food, Good Movement and Good Thinking.

Reply Reply

Lower Recovery Rates Here Than I Have Seen in Research
Posted by: ex-cfs
Aug 13, 2014
I have done quite a bit of secondary research, including many studies of possible treatments of CFS. In many of these studies, recovery rates (defined essentially as substantially better but maybe not perfectly better) hit more like 60% - 80%. Unfortunately I do not have these references handy.

The successful treatments tend either to be more comprehensive in multiple simultaneous treatment approaches, or they treat based on a theory which seems to explain most of the CFS symptoms.

The CDC once estimated that only 12% recover from CFS, but they also noted that 90% with CFS may be undiagnosed. So, I would imagine this 12% number is diluted by many who do not know what is wrong, and so what treatments to seek.

CBT does not make sense to me as this is not a thought process induced illness, but real medical dynamics. GET has been proven, to be if anything, harmful in most cases as post-exertional fatigue is a hallmark symptom of CFS. Perhaps it can be helpful toward the end of recovery when the body is substantially recovered to rebuild and strengthen it further. So, it makes sense that recovery rates for these therapies would be lower. Interestingly, as far as I have heard, these recovery rates are also lower than placebo recovery rates.
Reply Reply

Defining recovery is a process in motion
Posted by: ex-cfs
Aug 13, 2014
I am someone who has recovered from CFS, almost completely, with full functionality in my life restored. Most of my recovery happened in just over 2 years, but the rest has taken 12 more years so far, and has happened in uneven stages, rather than gradual improvement. I have theories about why this is so but the point is that recovery does not happen all at once.

I have grappled with how to define recovery. I felt "recovered" just over 2 years after falling ill with CFS. My doctors declared me recovered. I could resume life mostly fully, perhaps at an 80% level. I even swam and hiked, exercising. I reasoned that part of why I fell ill was that I was a super-achiever for the decade before I got sick. I probably did 125% or more of normal. So, a hard question for me to answer was, what is "normal"? If I was at 80% of where I was before falling ill and I was at 125%, then I was at 100% then. Fully recovered, but no longer a superwoman.

Another issue is age. Since recovering from CFS, I have addressed many other related issues and recovered further. As it has taken 12 more years, how do I compare my after 14 years later with my before so many years earlier? I would have to factor in aging. As many with CFS are sick for many years, normal aging or other illnesses from aging come into play, confounding the definition of "normal" or of recovery. Perhaps norms could be developed for various ages and genders, and recovery based on those.

Related to the issue of age, recovery, and treatment is the question of whether there are age-related changes which tend to lead to recovery, with or without treatment? Using age-matched and gender-matched controls can answer this question, but this is not always done in these complicated studies. I have noticed, for example, that the two times that risk for CFS is highest in females is when estrogen is rising -- as teens and young adults, and again in perimenopause. Many with CFS seem to recover 10 years later. Could this be because menopause hits an estrogen is no longer so high? Rather than a particular treatment?

One additional reason for recovering in stages over a long time, in addition to fixing more related health issues, is that the body's cells regenerate at different intervals in different body parts. Some may take a few months and some may take years. So, perhaps when a critical mass regenerates in an organ or body system, it suddenly starts functioning better. This happened to me at one point when I awoke one day suddenly feeling much better for no reason I could point to. I had not changed anything. But the much better and stronger feeling lasted. It was is if I just improved a bunch, a step up. Perhaps a critical regeneration was reached and something we do not yet look at improved.

As for lasting recovery, in my experience, and in others I have read about, the key is budgeting your energy and not once again overdoing or allowing oneself to get too out of balance. And continuing to do what worked to restore health. When I have started to feel symptoms arising again, I knew that I had overdone again, so I was not surprised. Another few days to 3 week rest period, combined with renewed commitment to what I knew worked to help me, restored my health again. My recovery has lasted and grown over time.

I now play tennis and am trying to get back into Masters competitive swimming. I hike up and down hills where I live. I am on the go all day, active with children and sometimes work. I have travelled and worked full-time extensively. I have made presentations and manned trade show booths all day. In short, I do what I want and need to do. This is what recovery means to me.
Reply Reply


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