Jason: post-infectious fatigue syndrome: a qualitative study of adults

[Effi]

New publication by Leonard Jason and Eva Stormorken (Norway).

Stormorken, E., Jason, L.A., & Kirkevold, M. (2017).
From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults' experiences of the illness trajectory.

BMC Family Practice, 18, 1-15.

DOI 10.1186/s12875-017-0614-4
goo.gl/1QqwQn

Background: Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastroin testinal 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 thisminor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one ormore courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experiencedthe 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 internat ional 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, range26–59). 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 thesedisabilities varied among the participants and during the illness phases. Despite individual variations, an overall patternof 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-illnesshealth or personal and professional abilities.

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

 

[Esther12]

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

Or it could make things worse.

 

[trishrhymes]

I prefer this bit:

' rest as needed,financial support and practical help would likely improve prognosis.'

 

[Esther12]

I prefer this bit:

' rest as needed,financial support and practical help would likely improve prognosis.'

I'm always on the hunt for a problem to compain about! I think I'm wary of anything that could lead to medical professionals telling patients what they should do, unless there's really good evidence to support the advice being given.

 

[Sean]

Early diagnosis, get off the patient's back, and pump funds into biomedical research for it.

I sit on a man's back, choking him, and making him carry me, and yet assure myself and others that I am very sorry for him and wish to ease his lot by any means possible, except getting off his back.

Leo Tolstoy, Writings on Civil Disobedience and Nonviolence (1886)

 

[Invisible Woman]

Excellent quote @Sean! Very apt!

 

[Dolphin]

I liked this. Sympathetic and realistic coverage of topic.

 

[Dolphin]

An example of odd scoring:

Participant 14 scored 100 at time point 4, indicating full recovery. At the same time, this participant reported 52 symptoms and was dependent on 50% welfare benefits, which is more consistent with a reduced functional level than full health.

 

[A.B.]

An example of odd scoring:

Whoa, that looks like some heavy duty brainwashing. Lightning Process? Just kidding. I wonder how a result like this can exist.

 

[Dolphin]

The participants exceeded their capacity limits, especially during the first phases. Ramsey noted during the outbreaks in the 1950s and later that affected individuals for whom rest was enforced when they fell ill had the best prognosis [69, 70]. This suggests that a faster progression to the turning and upward phases may contribute to less severe disabilities and facilitate improvement.

Our participants associated continued full-time work or studies for longer periods of time with higher levels of disability during the downward phase. Although this study cannot establish causal relationships, their experiences suggest that they might have needed help to ensure adequate rest early on to limit further deterioration. The participants described that the chronic phase could take many forms such as deterioration, no improvement and varying degrees of improvement. This is in line with previous findings [27, 70, 71].

 

[Dolphin]

All fatigue is not the same [75, 76], and the time to reach a diagnosis may take years. Contextual factors such as lack of knowledge and trivializing the participants’ symptoms may have caused diagnostic delay that may have had a negative influence on the prognosis. The participants struggled on their own, had no knowledge of what was wrong with them and thus chose many counterproductive actions that made them worse. Early recognition of the illness experience, trajectory and various disabilities accompanying PIFS may be considered as a key factor for GPs and other health care providers who will be able to provide more appropriate advice on how to master the condition and its implications and offer symptom alleviation at an earlier stage. An early diagnosis for the persons affected with PIFS is also important because they will be able to understand what is wrong with them and early on find the best ways deal with their illness and disabilities to improve their health and ability to function, or regain pre-illness life.

 

[halcyon]

I find it kind of bizarre that they focused so much on giardia during this outbreak. Perhaps because it was easy to isolate and it was unusual because it's not an endemic infection in the area. As it has never been linked with ME before (as far as I'm aware) and doesn't go systemic, it seems like an unlikely cause. As the source of the giardia was a sewage contamination of drinking water, it seems much more likely that the cause of the actual outbreak was an enterovirus instead. The outbreak began in August 2004 which is the exact highest prevalence month for enterovirus infections during that time period, at least in the US. I skimmed through several papers related to the outbreak and they never mention even testing anybody for enteroviruses.