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Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

Dolphin

Senior Member
Messages
17,567
http://www.tandfonline.com/doi/full/10.1080/09638288.2017.1383518?scroll=top&needAccess=true
Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective
Andrew R. Devendorf ,Carly T. Jackson,Madison Sunnquist &Leonard A. Jason
Pages 1-8 | Received 06 May 2017, Accepted 19 Sep 2017, Published online: 05 Oct 2017
Abstract
Purpose: To inform an operationalised definition of recovery from myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for research and practice. Without a consensus on defining and measuring recovery, there will continue to be controversy amongst researchers, clinicians, and patients when interpreting treatment outcomes.

Method: This study explores physicians’ views on recovery from ME and CFS. We conducted semi-structured interviews with 10 physician participants who are experts in the ME and CFS field. Our deductive thematic analysis, using a realist perspective, provided a framework for differentiating recovery and significant improvement.

Results: Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age), whereas they viewed significant improvement as a substantial reduction in symptoms with considerable functional gains, where patients may operate in daily life but still must cope or be treated.

Conclusions: Our findings provide recommendations and approaches for measuring: daily functioning, symptomatology, quality of life, and physical functioning.


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Chronic illness, assessment, prognosis, physical functioning, psychosocial functioning, qualitative

Additional information
Funding
This study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development [grant number HD072208].
 

Dolphin

Senior Member
Messages
17,567
The PACE trial (short for “Pacing, graded activity, and cognitive behaviour therapy; a randomised evaluation”) has contributed to this debate in claiming that 22% of patients with CFS recovered after CBT, and 22% recovered after graded exercise therapy (GET) [8]. However, researchers and patients have criticised the rigor of White et al. [8] recovery criteria [9,10]. Wilshire et al. [10] reanalysed the PACE data using more stringent criteria, as described in the original trial protocol. Under Wilshire et al. [10] analysis, CBT and GET led to recovery rates of just 7 and 4%, respectively, highlighting the need to operationalise ME and CFS recovery
 

user9876

Senior Member
Messages
4,556
I did wonder if someone could do a survey of patients (perhaps physicians and healthy people) using the sf36 questionnaire to see what abilities on the scale would correspond to 'recovered', 'healthy' etc. The EQ5d scoring is based on a utility function derived from surveys of healthy people where each person is only asked a few questions they are then combined using regression.
 

meandthecat

Senior Member
Messages
206
Location
West country UK
It's refreshing to read research that is seeking to understand rather than attempting to 'prove' a position. The views of an obviously enlightened and liberal group of doctors took me back to a rational place where humanity still had a role rather than the dogma that is usual and is used to bludgeon the terribly sick and vulnerable.

I hesitate to say I have recovered, I have certainly improved more than I dreamed possible but there are still cognitive deficits that I struggle with everyday, like word-finding. Reading often involves chasing the words around the page, and maths,simple arithmetic is a challenge( I once studied it at degree level).

I suspect that there will always be a 'scar' on the mind after such a horrific disease even if we decide that the disease has departed so a nuanced stance on recovery is a step toward claiming back our lives. I will never be as I was, it has changed me but in the words of Christina aguilara:

Cause it makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter…
 
Messages
2,125
"Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age)"

I would think this is what most people consider recovery. It is common sense, apart it would seem for the likes of Crawley, White Sharpe etc who seem to equate it to any minor, temporary improvement which is more akin to 'recovering' and is something different entirely.

Ideally there would be a few biological tests that could be run to confirm recovery but, as for a lot of illnesses, I suspect that would still not guarantee there would be no relapses.

But on the subject of means of testing recovery according to Crawley:
"No children ever said they wanted biological measures......."

Well no Esther, they are children; you are supposed to be the 'expert researcher'.
 

user9876

Senior Member
Messages
4,556
"Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age)"

The complex thing about a recovery definition is in defining recovery vs remission. As in is this something that will come back and if so should people be doing stuff to avoid it.

I think remission is probably a better term than recovery.
 

Denise

Senior Member
Messages
1,095
"

But on the subject of means of testing recovery according to Crawley:
"No children ever said they wanted biological measures......."

Well no Esther, they are children; you are supposed to be the 'expert researcher'.

As you say, children don't have the knowledge base to know that they want biological measures of recovery.

And depending on when they got sick and how long they have been sick, many would not remember what their premorbid level of function was like. (Much less would they know what "normal" would be for their current age.)
 

Sean

Senior Member
Messages
7,378
But on the subject of means of testing recovery according to Crawley:
"No children ever said they wanted biological measures......."

Well no Esther, they are children; you are supposed to be the 'expert researcher'.
That line from Crawley is more than a little disturbing.

Children never say they want surgery either. But they still need it sometimes.
 

user9876

Senior Member
Messages
4,556
But on the subject of means of testing recovery according to Crawley:
"No children ever said they wanted biological measures......."

Of course its not up to children to design the experiment although I wonder if they were set the task along with some basic background in how to run a trial then they would have done better.

The thing about biological measures is interesting because Crawley makes various assertions in the press about how treatments may work but she does nothing to collect evidence for her assertions. I think the LP talks a lot about adrenalin but there are no measures taken.
 

Cheshire

Senior Member
Messages
1,129
I think this comes partially because of the loose way "recovery" is defined in general in psychiatry. Their definition is closer to improvment than recovery (for me return to pre-morbid state, period):

For many people with mental illness, the concept of recovery is about staying in control of their life rather than the elusive state of return to premorbid level of functioning. Such an approach, which does not focus on full symptom resolution but emphasises resilience and control over problems and life, has been called the recovery model.[4,5,6] The approach argues against just treating or managing symptoms but focusing on building resilience of people with mental illness and supporting those in emotional distress.

While there is no single definition of the concept of recovery for people with mental health problems, there are guiding principles, which emphasise hope and a strong belief that it is possible for people with mental illness can regain a meaningful life, despite persistent symptoms. Recovery is often referred to as a process, an outlook, a vision, a conceptual framework or a guiding principle.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4418239/


According to the 2d sentence I bolded, many of us are recovered...

I read elsewhere similar descriptions of recovery in psychiatry, it seems to be the norm.
 
Last edited:

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I think this comes partially because of the loose way "recovery" is defined in general in psychiatry. Their definition is closer to improvment than recovery (for me return to pre-morbid state, period):


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4418239/


According to the 2d sentence I bolded, many of us are recovered...

I read elsewhere similar descriptions of recovery in psychiatry, it seems to be the norm.
I have done extremely well on psych meds. I would say I’m recovered, in the commonly accepted sense of no longer having symptoms. But it just goes to show how ineffective psychiatrists think their treatments are.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
"Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age)"

I would think this is what most people consider recovery. It is common sense, apart it would seem for the likes of Crawley, White Sharpe etc who seem to equate it to any minor, temporary improvement which is more akin to 'recovering' and is something different entirely.

Ideally there would be a few biological tests that could be run to confirm recovery but, as for a lot of illnesses, I suspect that would still not guarantee there would be no relapses.

But on the subject of means of testing recovery according to Crawley:
"No children ever said they wanted biological measures......."

Well no Esther, they are children; you are supposed to be the 'expert researcher'.
I would dispute that - my daughter would love to be able to read, exercise,engage in education and would love to have " real" evidence.
 
Messages
3,263
I think this comes partially because of the loose way "recovery" is defined in general in psychiatry. Their definition is closer to improvment than recovery (for me return to pre-morbid state, period):
That is mental (if you'll excuse the pun).

Actually, if you look carefully at @Cheshire's quote, its the same sort of doublespeak that gets thrown at us:
For many people with mental illness, the concept of recovery is about staying in control of their life rather than the elusive state of return to premorbid level of functioning.
It doesn't say that recovery is staying in control of your life, etc. What it seems to be saying you can forget "real" recovery as you understand it, because all you can hope for is staying in control of your life. etc.

Key phrases are used very slyly here. Like 'for many people' and 'the concept of' and 'is about'.
 

Seven7

Seven
Messages
3,444
Location
USA
I love love this. When I hear recovery stories I am errrr if I go by that I am recovered and I am far from!!!! I hate recovery stories where people say “ but I still take 300 supplements to be able to function and have to manage energy”... in my book I agree with this blog definition of recovery.
Since I do get spontaneous remissions on and off ( colds, viruses..) I can tell you there is a huge difference to not having to manage energy vs not.
If you have to manage energy YOU R NOT RECOVERED. Same if you can’t do aerobic excercise!!!!