good health to illness w/post-infectious fatigue syndrome: a qualitative study of adults experiences of the illness trajectory, 2017, Stormorken et al

Abstract

Background
Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities.

Methods
A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26–59). The interviews were fully transcribed and subjected to a qualitative content analysis.

Results
All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities.

Conclusions
The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis.

Open access, https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-017-0614-4

 

https://twitter.com/user/status/1419937901538779138

 

How would "interdisciplinary rehabilitation" stop people getting worse?

 

It doesn’t, but I suspect we are still at the stage where it is believed that any health professional involvement will result in improvement, so multidisciplinary involvement will result in even more improvement. Thinking of something that can be tried is unhelpfully seen as the same as having an effective intervention strategy.

Unfortunately those showing spontaneous improvement will be seen as evidence for efficacy, and those that get worse risk being blamed for not wanting to get better. (Though the inclusion of practical and financial support can only be a good thing.)

 

M A G I C
A
G
I
C

 

To me that just sounds like something that would stop you from getting better by impeding proper rest: "rehabilitation", but also lots of it as there are lots of "disciplines", so many draining and time/energy-consuming appointments. Is there any way to take on "multidisciplinary rehabilitation"? It's the kind of thing that sounds good to people and sounds good politically but is an impediment to progress.

If people cannot understand the concept of not being able to rehab your way of post-infectious illness, what hope is there? This kind of language should always be flagged and challenged in my opinion. x

 

"Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. "

All depends on what all these big words mean in reality. Early diagnosis obviously good. But then what. And how reliable is the diagnosis. Misdiagnosis is rife in pwME.

Plenty pwME would probably in hindsight have benefitted from simply being told to rest, soon after developing symptoms, rather than try to keep going and so forth. And that hardly needs a rehabilitation team. A doctor giving patients sound, clear rationale will go a long way here. But I suspect that has not been studied longitudinally so we have no data.

Also, do people who are perhaps somewhat debilitating by a medical condition actually do that (as in rest) especially with general life pressures like mortgages to pay, studies, deadlines, family and work commitments etc etc.

What would have benefitted me, and I suspect most pwME, when I started to get symptoms was to actually take a full history, investigate what ailed me and for medics to try their best to treat me. Took years and near complete physical malfunctioning to get close to this and even then nearly a decade to figure it all out and many years for recovery in total. Bends my head and I am a very lucky person to have some answers and to have a reasonable recovery and QoL. Few with ME have answers. What patients (and clinicans) need is medical answers and successful treatment. Seems obvious. In the absence of this support is all there is but this should not be dressed up as 'rehabilitation' or 'recovery' because it is not. Adapting and adjusting to live with at best.

Rehabilitation suggests to me recovery. It's everyones goal but it can't just happen cos one wants it too. Without medical intervention overturning whatever biomedical processes that have gone ary patients will remain ill.