Defining recovery in chronic fatigue syndrome: a critical review

[user9876]

Defining 'recovery' is similar to defining a 'successful treatment' isn't it? It lies in the hands of the beholder.

I think recovery suggests getting better where as a successful treatment suggests that the treatment works as expected. A treatment may make no claims of recovery but just suppress or reduce certain symptoms if this works it can be classed as successful even if it doesn't lead to recovery.

Another word/term is 'remission'... presumably I could now be in remission to some extent but would only really know if I 'relapsed' another relative word...

I view remission as an admission that the disease mechanism is suppressed but could come back. Oncologists will often talk of remission as they know there is a chance that cancer will reoccur over the next few years for someone who they have treated and who appears clear of the disease. Without a good understanding of disease mechanism or massive long term follow up I would have thought remission is a more honest phrase than recovered.

 

[lansbergen]

my self manipulated quote of the day "in the land of the blind the appearence of less symptons is king"

And that king can be the difference between life and death

 

[manna]

And that king can be the difference between life and death

i don't thoink you understand the point. I'm saying that less symptons can occur even if you're actually worse.

yes you can make folk toxic so they don't die of cancer or hiv so quickly and if more "life" (upright is life to some people...walking dead to others), without recovery, is your goal, then cool, by all means. but we're not dealing with life and death so closely here are we? then of course over 100,000 die, unnecessarily (toxic reactions), due to docotor administered medications each year in the united states...whilst they're obviously trying to reduce symptons...so that way of looking at things is clearly mortally dangerous.

 

[lansbergen]

but we're not dealing with life and death so closely here are we?

Ain't we?? Well, I was. Without the immune modulator I would have been long dead. And what about all the patients that died????

 

[manna]

Ain't we?? Well, I was. Without the immune modulator I would have been long dead. And what about all the patients that died????

if you'd have been long dead minus the immodulator then that condition must be superfluous to me/cfs. and, though this may grate, just because you never found a way to deal with it without meds, doesn't mean it can't be. in fact i would say there's always a way...i mean all meds are toxic forming right? so ultimately they must hinder.

i believe the famous motorcyclist, Barry Sheen, died of cancer that was preceeded by me/cfs. personally i think the me/cfs caused the cancer which killed him...shame it will only be logged as cancer. point was that me/cfs is a chronic illness, not acute. life threatening situations occur from acute conditions. if we're referring to longterm mortality then id agree that me/cfs will lessen life expectancy and lead to other acute or chronic conditions that lead to an early death.

but lets not highlight the bit we can argue and miss the uncomfortable fact that this philosophy of having less appearence of symptons is deadly.

thats one the stock replies i find annoying...id have died without it...another is, ive tried everything etc etc etc

 

[lansbergen]

if you'd have been long dead minus the immodulator then that condition must be superfluous to me/cfs. and, though this may grate, just because you never found a way to deal with it without meds, doesn't mean it can't be. in fact i would say there's always a way...

You are wrong. This chronic deadly infection does not go away. If the immune modulator does what it seems to do it is a miracle but I can not exclude it only postpones it.

point was that me/cfs is a chronic illness, not acute. life threatening situations occur from acute conditions.

You might not know it but ME is a chronic disease with acute fases. It fluctates

thats one the stock replies i find annoying...id have died without it...

Be happy with that but it won't change a thing.[/quote]

 

[manna]

You are wrong.

i might be, i'm open to that but i wouldn't state it categorically because for me thats closed minded and not encouraging of enquiry. but anyway we can disagree and still be ok with each other hopefully.

 

[lansbergen]

i might be, i'm open to that but i wouldn't state it categorically because for me thats closed minded and not encouraging of enquiry. but anyway we can disagree and still be ok with each other hopefully.

I disagree with you but I have no ploblems with that.

 

[Bob]

The paper cites a PACE-related letter by Charles Shepherd, which I think highlights important issues re 'recovery'.

See the right-hand column:
http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=8955899

 

[greebo]

I've been ill for thirteen years, probably a lot longer, but I stopped working in 2001. I've been diagnosed with ME/CFS or just CFS three times.

I have no idea whether that was the right diagnosis. I think it wasn't.

I don't know what illness I have/had, but I do know what recovery is. I have recovered, you see, since a couple of months. I was prescribed b12 injections and my health improved the very first day. Within a month my activity levels had become the same as those of the people around me.

And I mean effortless activity. I've been taking b12 injections for a couple of months now and almost all my symptoms have disappeared. I no longer have pain, I don't suffer from PEM, even after strenuous activity. My headache is mostly gone, I don't have nausea any more, my allergies are disappearing. I don't have a sore throat any more.

It's really not that difficult to describe recovery. It's just that this easy definition makes PACE look like the wasted money it actually is...

PS. I should be careful and call it "remission", but I can't I feel far too healthy

 

[Marco]

I've been ill for thirteen years, probably a lot longer, but I stopped working in 2001. I've been diagnosed with ME/CFS or just CFS three times.

I have no idea whether that was the right diagnosis. I think it wasn't.

I don't know what illness I have/had, but I do know what recovery is. I have recovered, you see, since a couple of months. I was prescribed b12 injections and my health improved the very first day. Within a month my activity levels had become the same as those of the people around me.

And I mean effortless activity. I've been taking b12 injections for a couple of months now and almost all my symptoms have disappeared. I no longer have pain, I don't suffer from PEM, even after strenuous activity. My headache is mostly gone, I don't have nausea any more, my allergies are disappearing. I don't have a sore throat any more.

It's really not that difficult to describe recovery. It's just that this easy definition makes PACE look like the wasted money it actually is...

PS. I should be careful and call it "remission", but I can't I feel far too healthy

Good to hear greebo.

Problem is that its such a vague definition that all sorts of problems can result in a 'diagnosis' of ME/CFS and after that its rare to be tested for anything else.

Your case sounds a lot like an aunt of mine who was exhausted, prematurely grey, depressed and anxious for very many years until B12 injections changed her life completely. She had been in that state for so long that I hardly recognised this 'new" person.

If I were new to ME/CFS these days I'd resist being labelled with it at all costs.

 

[Dolphin]

Defining 'recovery' is similar to defining a 'successful treatment' isn't it? It lies in the hands of the beholder.

I was just reading a blog, and there were several comments from people saying they felt their - largely antiviral treatments - had been 'successful', and yet they are still here...

Recovery is a relative term for me, like 'treatment', and 'therapy' come to think of it. I feel more recovered today than I did, say, 4 years ago but I am not cured, and I remain disabled.

Another word/term is 'remission'... presumably I could now be in remission to some extent but would only really know if I 'relapsed' another relative word...

Relative to the patient - and to the doctor I guess - and your family and friends... all pretty subjective but it needs some measurement applied at some point and not everyone will agree what that should be of course.

I think time has something to do with it. How long have I maintained this level of 'function' of 'coping' of 'management' of 'independence' etc. ... but again, how do you cater for the 'fluctuations'...

It's a hard one to answer completely well and these terms get bandied around by people in everyday life...

To me "recovered" is/should be synonymous with "cured".

 

[Firestormm]

To me "recovered" is/should be synonymous with "cured".

That doesn't work though does it Dolphin at least not with a relapsing and remitting condition: how would/do I know if I am 'recovered' unless/until I have a relapse on the basis of your equation with cured? Until such time as we know a disease process and can effectively produce disease modifying treatments that might 'cure' the disease, I don't think 'cured' can be equated with 'recovered'. Else it remains subjective. And until we know more about the disease itself, I might think I am relapsing after a period of thinking I am recovered, when it could be something else...

All rather confusing. I just aim/hope for stability of function. Remaining on a nice plateau for a while. That would do for me I think.

 

[Dolphin]

To me "recovered" is/should be synonymous with "cured".

That doesn't work though does it Dolphin at least not with a relapsing and remitting condition: how would/do I know if I am 'recovered' unless/until I have a relapse on the basis of your equation with cured? Until such time as we know a disease process and can effectively produce disease modifying treatments that might 'cure' the disease, I don't think 'cured' can be equated with 'recovered'. Else it remains subjective. And until we know more about the disease itself, I might think I am relapsing after a period of thinking I am recovered, when it could be something else...

All rather confusing. I just aim/hope for stability of function. Remaining on a nice plateau for a while. That would do for me I think.

If it's a relapsing and remitting condition, surely all the more reason not to use "recovery" and instead use "remission".

 

[Dolphin]

I notice a small error with the table for the PACE Trial recovery paper:

CFQ Score <18
SF-36 physical function Score >60

It should be
less than or equal to 18
and
greater than or equal to 60.

If anyone knows already, or cross checks, whether any of the other criteria are correct, I'd be interested. It would be quite a lot of work to check them all - I might check some if others have been checked.

Similarly if people find more details about the definition of recovery than given in Table 1, I'd be interested.
For example, for the PACE Trial it has: Measure:CGI Qualification: 7-point rating of overall health change
- that's clearly not enough information - it doesn't say what the threshold was. In this case, it happened to be covered by the text:

Patient recovery was defined as being within the normal range on self-report measures of fatigue and physical function, no longer meeting Oxford criteria for CFS, and reporting an overall clinical global rating of ‘‘very much better’’ or ‘‘much better.’’

i.e. a CGI score of 1 or 2 on the 7-point scale

 

[Dolphin]

Thoughtful comment by Joan Crawford on this paper and the issue of the definition of recovery:
http://www.ncbi.nlm.nih.gov/pubmed/24791749#cm24791749_4780
------
Some people on mobile devices might have difficulty finding the comment at thi.s link (you have to click "normal PubMed" or something like that to see it).

An alternative way to see it is at PubMed Commons http://www.ncbi.nlm.nih.gov/pubmedcommons/ - go down to June 4 comments (it's currently the most recent comment in PubMed Commons so easy to find)

 

[Esther12]

All rather confusing. I just aim/hope for stability of function. Remaining on a nice plateau for a while. That would do for me I think.

I want a full return to my prior levels of health... and if not, I want the quacks who took it upon themselves to reassure me about recovery to have to pay some price for the harm done by their unwanted psychosocial management.

 

[Dolphin]

Frank Twisk on Twitter:

A Letter to the Editor "Defining Recovery in CFS should be based upon objective measures" (Joans arguments) has been accepted...

 

[Dolphin]

Frank Twisk had a letter published in reply. Here's the abstract (don't recall seeing an abstract for a letter before).

http://link.springer.com/article/10.1007/s11136-014-0737-1

Abstract

Introduction
Adamowicz and colleagues recently proposed to use “a consistent definition of recovery that captures a broad-based return to health with assessments of both fatigue and function as well as the patients’ perceptions of his/her recovery status” for patients with chronic fatigue syndrome (CFS).

Methods
A qualitative analysis of case definitions for Myalgic encephalomyelitis (ME) and CFS and methods to assess the symptoms and clinical status of ME and CFS patients objectively.

Results
The criteria of CFS define a heterogeneous disorder. ME, often used interchangeably with CFS, is principally defined by muscle weakness, cognitive impairment etc., but above all post-exertional “malaise”: a long-lasting increase in symptoms, e.g. muscle pain and cognitive deficits, after a minor exertion. The principle symptom of CFS however is “chronic fatigue”. Since post-exertional “malaise” is not obligatory for CFS, only part of the CFS patients meet the diagnostic criteria for ME, while not all ME patients qualify as CFS patients. There are several accepted methods to assess characteristic symptoms and the clinical status of ME and CFS patients using objective measures, e.g. (repeated) cardiopulmonary exercise tests.

Conclusion
To resolve the debate about the clinical status, proposed effectiveness of therapies and recovery in ME and CFS, it is crucial to accurately diagnose patients using well-defined criteria for ME and CFS and an objective assessment of various typical symptoms, since subjective measures such as “fatigue” will perpetuate the debate.

References (7)

Adamowicz, J. L., Caikauskaite, I., & Friedberg, F. (2014). Defining recovery in chronic fatigue syndrome: A critical review. Quality of Life Research,. doi:10.1007/s11136-014-0705-9.

Twisk, F. N. M. (2014). The status of and future research into myalgic encephalomyelitis and chronic fatigue syndrome: The need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups. Frontiers in Physiology, 5, 109. doi:10.3389/fphys.2014.00109. CrossRef

Snell, C. R., Stevens, S. R., Davenport, T. E., & VanNess, J. M. (2013). Discriminative validity of metabolic and workload measurements to identify individuals with chronic fatigue syndrome. Physical Therapy, 93(11), 1484–1492. doi:10.2522/ptj.20110368. CrossRef

Keller, B. A., Pryor, J. L., & Giloteaux, L. (2014). Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2 peak indicates functional impairment. Journal of Translational Medicine, 12, 104. doi:10.1186/1479-5876-12-104. CrossRef

White, P. D., Goldsmith, K. A., Johnson, A. L., Potts, L., Walwyn, R., DeCesare, J. C., et al. (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet, 377(9768), 823–836. doi:10.1016/S0140-6736(11)60096-2. CrossRef

Troosters, T., Gosselink, R., & Decramer, M. (1999). Six minute walking distance in healthy elderly subjects. European Respiratory Journal,14(2), 270–274. doi:10.1034/j.1399-3003.1999.14b06.x. CrossRef

Council of approval with regards to rehabilitation contracts with CFS reference centers. [Akkoordraad in het kader van de revalidatieovereenkomsten inzake ten laste neming door Referentiecentra van patiënten lijdend aan het Chronisch vermoeidheidssyndroom] [Dutch]. Evaluation Report (2002–2004) with respect to Rehabilitation Contracts between the RIZIV and the CFS Reference Centers [Evaluatierapport (2002–2004) met betrekking tot de uitvoering van de revalidatieovereenkomsten tussen het Comité van de verzekering voor geneeskundige verzorging (ingesteld bij het Rijksinstituut voor Ziekte- en invaliditeitsverzekering) en de Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS)] [Dutch]. July 2006.

 

[Dolphin]

Frank Twisk had a letter published in reply. Here's the abstract (don't recall seeing an abstract for a letter before).

Full reply from authors: http://download.springer.com/static...787_609b91e6cf4942c6faf6fb4f952a9803&ext=.pdf

Qual Life Res
DOI 10.1007/s11136-014-0738-0
COMMENTARY
Authors’ response to commentary by Twisk

Jenna L. Adamowicz • Indre Caikauskaite • Fred Friedberg

We respond here to commentary by Twisk [1] on our article entitled ‘‘Defining recovery in chronic fatigue syndrome: A critical review’’ [2]. Our colleague presents a biomedical model of diagnosis and recovery that is interesting, but more hypothetical than practical given the current state of knowledge in CFS and ME.

We acknowledge that the use of objective assessments to ensure accurate diagnosis and document recovery is highly desirable; however, there is no such gold standard for CFS or ME. The Cardiopulmonary Exercise Test (CPET), as argued, may show promise as an objective measure of illness or perhaps recovery from illness; however, it is time-consuming, expensive, and burdensome to patients, many of whom will understandably refuse to undergo the rigors of 1–2 exhaustive treadmill tests. Also, it is simply not an established diagnostic test with all of the validation studies (e.g., sensitivity, specificity) that would be required. Thus, the evidence for the CPET as an illness marker is not sufficient to recommend it as a measure of recovery in any clinical or research context.

With regard to successful behavioral interventions in CFS, we agree that outcomes are rarely confirmed with more objective measures, such as actigraphy (which does not improve with the treatment) [3] or the 6-min walk test which sometimes shows increased fitness [4] and sometimes not. The recovery assessment that we suggest is based on a transdiagnostic model; it is intended to document what is commonly understood as indicating recovery, i.e., a sustained reduction of symptoms to normative levels and restoration of premorbid functioning. It does not depend on objective tests which in the case of CFS and ME are not available anyway.

Finally, symptoms should not be dismissed as unimportant to a recovery assessment because they are ‘‘subjective.’’ Patient-reported symptoms, including both fatigue and post-exertional malaise, convey critical information about illness severity and impact as well as potential recovery from illness. Without a full assessment of symptoms to inform the researcher’s characterization of illness, we are left with a biased, incomplete picture.

Our recommendations for documenting recovery are applicable towhichever illness definition, CFS orME, is used, because it is based on broadly shared characteristics of health restoration: symptom relief, normative functioning, and importantly patients’ perceptions of their recovery status.

References

1. Twisk, F. (in press). Commentary: A definition of recovery in myalgic encephalomyelitis and chronic fatigue syndrome should be based upon objective measures. Quality of Life Research.

2. Adamowicz, J., Caikauskaite, I., & Friedberg, F. (2014). Defining recovery in chronic fatigue syndrome: A critical review. Quality of Life Research. doi:10.1007/s11136-014-0705-9.

3. Wiborg, J. F., Knoop, H., Stulemeijer, M., Prins, J. B., & Bleijenberg, G. (2010). How does cognitive behavior therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychological Medicine, 40(8), 1281–1287.

4. Sharpe, M., Hawton, K., Simkin, S., Surawy, C., Hackmann, A., Klimes, I., Peto, T., Warrell, D., & Seagroatt, V. (1996). Cognitive behavior therapy for the chronic fatigue syndrome: A randomized controlled trial. BMJ, 312(7022), 22–26.