A systematic review describing the prognosis of chronic fatigue syndrome (2005), Cairns, R & Hotopf, M

[MSEsperanza]

R. Cairns, M. Hotopf, A systematic review describing the prognosis of chronic fatigue syndrome, Occupational Medicine, Volume 55, Issue 1, January 2005, Pages 20–31, https://doi.org/10.1093/occmed/kqi013

Content only available as PDF:
https://academic.oup.com/occmed/article-pdf/55/1/20/4197149/kqi013.pdf

Abstract

Aim
To perform a systematic review of studies describing the prognosis of chronic fatigue (CF) and chronic fatigue syndrome (CFS) and to identify occupational outcomes from such studies.

Method
A literature search was used to identify all studies describing the clinical follow-up of patients following a diagnosis of CF or CFS. The prognosis is described in terms of the proportion of individuals improved during the period of follow-up. Return to work, other medical illnesses and death as outcomes are also considered, as are variables which may influence prognosis.

Results
Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0–31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%).

Less fatigue severity at baseline, a sense of control over symptoms and not attributing illness to a physical cause were all associated with a good outcome. Return to work at follow-up ranged from 8 to 30% in the three studies that considered this outcome.

Conclusions
Full recovery from untreated CFS is rare.

The prognosis for an improvement in symptoms is less gloomy. This review looks at the course of CF/CFS without systematic intervention. However, there is increasing evidence for the effectiveness of cognitive behavioural and graded exercise therapies. Medical retirement should be postponed until a trial of such treatment has been given.

 

[Snow Leopard]

This one certainly gets mentioned a lot...

While I agree with the conclusion "Full recovery from untreated CFS is rare.", a major limitation is the lack of long-term followup of most studies.

 

[MSEsperanza]

See also:
S A M Stevelink, N T Fear, M Hotopf, T Chalder, Factors associated with work status in chronic fatigue syndrome, Occupational Medicine, Volume 69, Issue 6, August 2019, Pages 453–458, https://doi.org/10.1093/occmed/kqz108

https://www.s4me.info/threads/facto...-stevelink-n-t-fear-m-hotopf-t-chalder.10645/

55% were currently working but if I understand correctly, this includes patients who worked part-time, did casual work or are a student. Nonetheless the average of 30 hours a week seems quite high.

There was no significant difference in anxiety between those who worked and those who did not, so I assume this isn't a major factor determining whether patients continue to work or not. There was also no difference in somatic attributions between the groups, while the difference in physical functioning (60 versus 30) was huge. So it seems that what determines whether CFS patients continue to work or not is not patients thinking they have a somatic illness or anxiety, but how ill they actually are.

I usually respond if I think there's something really misleading in the results, that might confuse readers. Don't think this is the case with this short paper. On the other hand, it's rather frustrating that the authors do not discuss the hypotheses they have tested.

Why did they ask patients whether they saw their symptoms as physical, psychological or combination of both? They probably thought this was an important factor determining outcomes. But now that the results indicate it's irrelevant to work status, they barely mention it in the discussion section. They also highlight the high numbers of anxiety in this patient sample, by which they seem to say that this is important. But there was no difference in anxiety between the working and not-working group.

I suspect that if somatic attributions and anxiety, which both feature prominently in their cognitive behavioural model, had shown significant differences between the groups, that the authors would have highlighted this and how important it is to incorporate this in the treatment etc.

 

[petrichor]

Another limitation is that the studies in the review are mostly patients that have been sick in the range of 3-5 years or more, and there are indications people sick for shorter periods have a better prognosis, so this can't be applied to them.

Also it seems like they just straight up took the median of the studies to arrive at the 5% estimate rather than doing a weighted average or any kind of more sophisticated statistical analysis

 

[MSEsperanza]

This one certainly gets mentioned a lot...

Yes, for example:

Vink M, Vink-Niese A. The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials. Journal of Health Psychology. January 2021 (Editorial), doi:10.1177/1359105321990810

https://journals.sagepub.com/doi/full/10.1177/1359105321990810

https://www.s4me.info/threads/the-d...nreliability-vink-vink-niese-johp-2021.18862/

While I agree with the conclusion "Full recovery from untreated CFS is rare.", a major limitation is the lack of long-term followup of most studies.

Cairns and Hotopf acknowledge some limitations, but certainly not all; above all, it seems to me they acknowledge limitations at some places in their paper but fail to acknowledge them in their conclusions.

Won't be able in the near future to have a more thorough look at this. Not sure if it's worthwhile either, but I think some of their considerations regarding return to work are justified, in part -- especially the chances to return to work after long term sick leave. But then they again squeeze these considerations into their hypothesis.

(That's why, in my dualistic way of thinking, I posted this thread on the psychosocial research subforum.)

 

[MSEsperanza]

Tried to find by skimming but haven't : In which way did the authors acknowledge the fact that the patient samples were a mix of CF diagnosis and also different CFS diagnostic criteria?

 

[forestglip]

This seems to be the main source for the often referenced 5% recovery rate. It's been 19 years. Has there not been a review since then?

Also, I can't figure out why these seem to be saying the same thing but giving different numbers. The first is from the abstract, the second is from the Global Improvement section.

Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0 –31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%).

Table 1 presents the main outcomes of the 14 studies that used operational criteria to define cohorts of patients with CFS. Ten of the studies report the outcome of recovery and improvement separately while two describe self-reported improvement that presumably encompasses full recovery as an outcome [17,19] and two describe only recovery as an outcome [20,21]. The median full recovery rate during the follow-up periods was 7% (range 0 –48%) and the median proportion of patients who improved during follow-up was 39.5% (range 8 – 63%).

Edit: It seems the abstract is using the 5 year follow up figure from Reyes 1999 (31%) while the later section is using the 10 year rate from the same paper (48%). Though I don't see why that would change the median, unless they just added the 48% on without removing the 31%. Might be an error. It's the same people for both figures, so I don't think both should be included, so 5% is probably right. (But should be written 5%, range 0-48%.)

 

[forestglip]

Actually, it looks like 7% (range 0-48%) is correct. These are the recovery rates of the studies included in the calculation:

0, 3, 3, 3, 4, 5.8, 8, 12, 19, 20, 24, 48

Which gives a median of 6.9%. Which was probably rounded up to the 7% in the main body of the paper.

They'd have to exclude two of the higher studies to get 4.9%, and I don't see anything in the paper explaining why they would do that.

They also used 31% instead of 48% in the abstract figure's upper range without explaining why, which makes me think that 5% abstract figure is just a mistake.


Edit: I think I see how the 31/48 discrepency could have happened, because it almost happened to me. When scanning down the list of outcomes in the table, for one study, it says:

97% took part in follow-up, response rate 91% for all seven interviews: 31% perceived recovery within first 5 years of illness, 48% reported recovery within 10 years. Recovery reported with respect to last 4 weeks—no adjustment for whether permanent/ temporary. No deaths

I read the 31% recovered number and almost moved on to the next study, then I noticed the next sentence has a longer followup recovery rate.

Though still not sure why two studies would have been excluded.

Edit 2: I think I know how the 5% mistake happened too because it initially happened to me too. I assumed if the outcome didn't list recovery, it meant 0% recovered, but that's not the case, the recoveries just weren't separately reported from "improved". There are two of those studies, and adding two 0's would make the median 4.9.

 

[forestglip]

I decided to add up the actual numbers of people that recovered from all studies in this meta analysis and divide by all participants, because this seems like at least as good as a median to calculate recovery rate. Though I don't know if there's any really good way to combine these studies since the followups were all different lengths of time. I wasn't completely sure about the values for the numbers with question marks, but the real value should be within 1 or 2 of those. They link to the studies.

0 + 24 + 8 + 6 + 8 + 3 + 68? + 1 + 7? + 6 + 1 + 21 = 153 recovered
68 + 291 + 265 + 103 + 246 + 15 + 141? + 23 + 53 + 78 + 35 + 177 = 1495 followed up

153/1495 = 10.2% recovered

 

[bobbler]

R. Cairns, M. Hotopf, A systematic review describing the prognosis of chronic fatigue syndrome, Occupational Medicine, Volume 55, Issue 1, January 2005, Pages 20–31, https://doi.org/10.1093/occmed/kqi013

Content only available as PDF:
https://academic.oup.com/occmed/article-pdf/55/1/20/4197149/kqi013.pdf

Abstract

Aim
To perform a systematic review of studies describing the prognosis of chronic fatigue (CF) and chronic fatigue syndrome (CFS) and to identify occupational outcomes from such studies.

Method
A literature search was used to identify all studies describing the clinical follow-up of patients following a diagnosis of CF or CFS. The prognosis is described in terms of the proportion of individuals improved during the period of follow-up. Return to work, other medical illnesses and death as outcomes are also considered, as are variables which may influence prognosis.

Results
Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0–31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%).

Less fatigue severity at baseline, a sense of control over symptoms and not attributing illness to a physical cause were all associated with a good outcome. Return to work at follow-up ranged from 8 to 30% in the three studies that considered this outcome.

Conclusions
Full recovery from untreated CFS is rare.

The prognosis for an improvement in symptoms is less gloomy. This review looks at the course of CF/CFS without systematic intervention. However, there is increasing evidence for the effectiveness of cognitive behavioural and graded exercise therapies. Medical retirement should be postponed until a trial of such treatment has been given.

My goodness when you think about what this did regarding coercion into harm.

do we think they were aware about the significance of that one line?

fir a treatment that wasn’t checked for harm nevermind the impact on the actual medical condition just by having longer follow up than a few months..

And people terrified to go back when they get worse because they’ll be forced into more and realise the belief ‘it works’ of just enforced dogma you don’t write it didn’t unless it’s about patient failure …. How did those doing it not see what they were doing? It’s such a massive culture is sue it’s hard to believe it wasn’t red flagged

 

[bobbler]

I decided to add up the actual numbers of people that recovered from all studies in this meta analysis and divide by all participants, because this seems like at least as good as a median to calculate recovery rate. Though I don't know if there's any really good way to combine these studies since the followups were all different lengths of time. I wasn't completely sure about the values for the numbers with question marks, but the real value should be within 1 or 2 of those. They link to the studies.

0 + 24 + 8 + 6 + 8 + 3 + 68? + 1 + 7? + 6 + 1 + 21 = 153 recovered
68 + 291 + 265 + 103 + 246 + 15 + 141? + 23 + 53 + 78 + 35 + 177 = 1495 followed up

153/1495 = 10.2% recovered

So just in case they are one of the misdiagnosed or the coercion to keep saying you feel well (you are in that need of hope) for how long?

vs the risk …. Did they ever even look at the risk?

 

[bobbler]

This one certainly gets mentioned a lot...

While I agree with the conclusion "Full recovery from untreated CFS is rare.", a major limitation is the lack of long-term followup of most studies.

And surely the comparison before you make those kinds of recommendations is to check that the disability level isn’t being made worse by the treatment long term vs what it would have been with a rest or step back approach

when you think about the care bill some might have ended up with in their retirement that would/could have been wholly unnecessary had a sensible approach been taken …

 

[Maat]

So can someone please help me understand this, thoughts just drifting out the top of my head at the mo.

This Prognosis Review paper in 2005 covering "CF" and "CFS" in which they include as part of their aims:

"Consideration will be given to return to work as an outcome measure when these data are available."

and which also discussed work outcomes - did nothing about it until this paper

S A M Stevelink, N T Fear, M Hotopf, T Chalder, Factors associated with work status in chronic fatigue syndrome, Occupational Medicine, Volume 69, Issue 6, August 2019, Pages 453–458, https://doi.org/10.1093/occmed/kqz108

https://www.s4me.info/threads/facto...-stevelink-n-t-fear-m-hotopf-t-chalder.10645/

This later paper only covered a period from 2007 to 2014 and did not mention "CF", and which itself was not published until 2019? And which was also during the PACE trial which also didn't report on work outcomes.

So in the the UK there was absolutely no evidence base for any sort of return to work following treatment from the Chief Medical Officer's report 2002 until today?

Am I understanding this correctly?

 

[Sean]

And which was also during the PACE trial which also didn't report on work outcomes.

The original PACE paper (2011) did not report on employment and public welfare/private insurance use outcomes. They are reported in the Cost-Effectiveness Analysis paper, published in 2013, and were null and negative, respectively.

 

[Maat]

The original PACE paper (2011) did not report on employment and public welfare/private insurance use outcomes. They are reported in the Cost-Effectiveness Analysis paper, published in 2013, and were null and negative, respectively.

Thanks @Sean