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Fatigue in adults with post-infectious fatigue syndrome - from Norway

charles shepherd

Senior Member
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2,239
Eva Stormorken gave a presentation on her research at the UK Research Collaborative conference in October

Full paper is available at Biomed central: http://www.biomedcentral.com/1472-6955/14/64


Fatigue in adults with post-infectious fatigue syndrome: a qualitative content analysis
Eva Stormorken1*, Leonard A. Jason2 and Marit Kirkevold1
Author Affiliations

1Department of Nursing Science, Institute of Health and Society, University of Oslo, Blindern 0318, Oslo, Norway
2Center for Community Research, DePaul University, 990 W. Fullerton Ave, Suite 3100, Chicago 60614, Illinois, USA
For all author emails, please log on.
BMC Nursing 2015, 14:64 doi:10.1186/s12912-015-0115-5
The electronic version of this article is the complete one and can be found online at:http://www.biomedcentral.com/1472-6955/14/64

Received: 6 July 2015
Accepted: 25 November 2015
Published: 28 November 2015
© 2015 Stormorken et al.
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Abstract
Background
Fatigue is a major problem among individuals with post-infectious fatigue syndrome (PIFS), also known as chronic fatigue syndrome or myalgic encephalomyelitis. It is a complex phenomenon that varies across illnesses. From a nursing perspective, knowledge and understanding of fatigue in this illness is limited. Nurses lack confidence in caring for these patients and devalue their professional role. The aim of this study was to explore in-depth the experiences of fatigue among individuals with PIFS. A detailed description of the phenomenon of fatigue is presented. Increased knowledge would likely contribute to more confident nurses and improved nursing care.

Methods
A qualitative study with open interviews was employed. In-depth interviews with patients were fully transcribed and underwent a qualitative content analysis. A maximum variation sample of 26 affected adults between 26–59 years old was recruited from a population diagnosed at a fatigue outpatient clinic.

Results
The fatigue was a post-exertional, multidimensional, fluctuating phenomenon with varying degrees of severity and several distinct characteristics and was accompanied by concomitant symptoms. Fatigue was perceived to be an all-pervasive complex experience that substantially reduced the ability to function personally or professionally. A range of trigger mechanisms evoked or worsened the fatigue, but the affected were not always aware of what triggered it. There was an excessive increase in fatigue in response to even minor activities. An increase in fatigue resulted in the exacerbation of other concomitant symptoms. The term fatigue does not capture the participants’ experiences, which are accompanied by a considerable symptom burden that contributes to the illness experience and the severe disability.

Conclusions
Although some aspects of the fatigue experience have been reported previously, more were added in our study, such as the dimension of awakening fatigue and the characteristic beyond time, when time passes unnoticed. We also identified trigger mechanisms such as emotional, neurological, social, financial, and pressure on oneself or from others. This in-depth exploration of fatigue in PIFS provides an overview of the dimensions, characteristics, and trigger mechanisms of fatigue, thus making better clinical observations, early recognition, improved communication with patients and more appropriate nursing interventions possible.

Keywords:
Adult patients; Fatigue; In-depth interview; Myalgic encephalomyelitis chronic fatigue syndrome; Nursing qualitative research; Qualitative research; Patient experiences; Post-infectious fatigue syndrome
 

SOC

Senior Member
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7,849
Fatigue is a major problem among individuals with post-infectious fatigue syndrome (PIFS), also known as chronic fatigue syndrome or myalgic encephalomyelitis.
When did post infectious fatigue syndrome become equivalent to ME?
We also identified trigger mechanisms such as emotional, neurological, social, financial, and pressure on oneself or from others.
This is a list of triggers for fatigue? o_O
This in-depth exploration of fatigue in PIFS provides an overview of the dimensions, characteristics, and trigger mechanisms of fatigue, thus making better clinical observations, early recognition, improved communication with patients and more appropriate nursing interventions possible.
I wonder how nursing intervention is going to help with fatigue in this case? Perhaps they can help us learn to avoid those nasty emotional, financial, and self-pressure triggers of our fatigue...? A little amateur counseling maybe?

If this was about fatigue in general -- post-infectious, stress-induced, depression and anxiety-related, it might make more sense to me. Calling it ME seems misinformed, at best.

I get that whole time passing unnoticed thing, though. It's one of the weirder and more disturbing symptoms I've had since developing ME. However, I don't know what it has to do with fatigue. o_O I would have thought it was a neurological/cognitive symptom.

Studies of post-infectious fatigue that look into biomedical factors could be very useful to us, even if not specific to ME. I'm not sure this is one of those studies.
 

CFS_for_19_years

Hoarder of biscuits
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2,396
Location
USA
I don't think any of these patients have ME at all. They had post-giardiasis fatigue which they also referred to as Post-Infectious Fatigue Syndrome or PIFS.

Background
In 2004, 48,000 people were exposed to contaminated municipal drinking water in a part of Bergen, Norway. From the Norwegian Prescription Database, it was assumed that > 2500 persons had been affected by a gastrointestinal infection (GI) 1]. The parasite Giardia lamblia was found to be responsible, having entered the water supply through a leak in a sewer pipe 2]. The infection caused diarrhoea, weight loss, and other gastrointestinal complaints 1]. Affected people were treated with antibiotics, but a minority remained ill and severely fatigued. They were referred to the Outpatient Clinic at the Department of Neurology, Haukeland University Hospital from August 2005 to September 2007 with suspicion of post-infectious fatigue syndrome (PIFS) 3].

Recruitment and sample
The post-giardiasis fatigued patients referred to the clinic were evaluated by a neurologist and diagnosed with PIFS according to international criteria for CFS 7]. In this PIFS cohort 3], the mean Fatigue Severity Score 26] was 6.64 (SD: 0.45). The subscores on the SF-36 27] were significantly reduced, with the lowest scores for physical capacity, vitality and social functioning. The sample in this qualitative interview study was recruited from the cohort of 58 adults 3].

The condition evolved over the 4 years following the Giardia-induced infection that triggered PIFS, but the evolution did not occur in the same way for all participants. Although each participant was healthy pre-illness and the trigger mechanism was the same, the range of improvement varied. None had resumed pre-illness personal or professional functional levels.

Strengths and limitations
The strengths of this study are the relatively large and strategic maximum variation sample, a well-defined population with a known precipitating cause and the open-ended interview approach. There are also several limitations. The sample included only persons well enough to participate, ruling out the most severely affected. Furthermore, this cohort fell ill following a confirmed gastrointestinal infection and might therefore differ from samples with insidious onset and/or other infectious agents.
 

halcyon

Senior Member
Messages
2,482
When did post infectious fatigue syndrome become equivalent to ME?
Seriously. This is exactly what Ramsay said ME isn't:
An article by David, Wessely and Pelosi entitled 'Postviral Fatigue Syndrome: time for a new approach' (1988) makes it abundantly clear that in my monograph 'Postviral Fatigue Syndrome: The Saga of Royal Free Disease' I failed to draw a clear distinction between Myalgic Encephalomyelitis and other postviral fatigue states. I have never approved of the term 'Postviral Fatigue Syndrome' and accepted it with great reluctance when Gower Medical Publishing Limited insisted that it should be used as a title for my monograph. The fact that it was accepted on both sides of the Atlantic and obviated the disadvantage of an American term 'Epidemic Neuromyasthenia' and a British term 'Myalgic Encephalomyelitis' for the same disease was in its favour. Its disadvantage lay in the fact that it provided too wide a cover for the many postviral fatigue states that can quite legitimately be included under such a title. I insisted on using the term Myalgic Encephalomyelitis for my treatise. When, on the occasion of a recent ITV programme on the subject of Myalgic Encephalomyelitis, an immunologist stated the 'M.E. and PVFS are regarded as synonymous' I realised that my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue. It is fortunate that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.

PIFS I believe is a construct that comes from the Oxford criteria, where it's listed as a subtype of CFS. They don't equate CFS or PIFS with ME in the Oxford criteria.
 

SOC

Senior Member
Messages
7,849
I don't think anyof these patients have ME at all. They had post-giardiasis fatigue which they also referred to as Post-Infectious Fatigue Syndrome or PIFS.
So once again, people who don't know what ME or PEM is claim to be studying it when all they're studying is fatigue. Lenny Jason should know better. I wonder what that's about. :rolleyes: Sigh....

We'll never get the knowledge base cleaned up at this rate. We'll just have to give our disease an entirely new name and start over from scratch. :grumpy:
 
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I don't agree. I think this post-guardiasis population provide a nice model for addressing certain questions regarding immune-related fatigue. The advantage is that its a group with a known aetiology, which has some benefits over even the tightest symptom-based definitional criteria. These people are severely incapacitated, it says almost none returned to previous functionality even after four years.

I do agree, however, that they shouldn't introduce any new names. Just describe the cohort.
 

daisybell

Senior Member
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Location
New Zealand
Many of us identify an infectious trigger to our ME - this group have all had Giardia, but I don't see why that doesn't mean they now have ME. What I'm not sure about is whether they were all diagnosed with ME....
 
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3,263
What I'm not sure about is whether they were all diagnosed with ME....
It says all patients also met the Fukuda criteria, which is not ideal, I know. Still, the known onset event probably does filter out some other conditions (e.g. depression) that might otherwise sneak though using these criteria.
 

SOC

Senior Member
Messages
7,849
I don't agree. I think this post-guardiasis population provide a nice model for addressing certain questions regarding immune-related fatigue. The advantage is that its a group with a known aetiology, which has some benefits over even the tightest symptom-based definitional criteria. These people are severely incapacitated, it says almost none returned to previous functionality even after four years.

I do agree, however, that they shouldn't introduce any new names. Just describe the cohort.
Does it appear to you, then, that this is an ME cohort also called PIFS in this paper? Remaining severely ill for a long time after a viral infection doesn't make ME. If the patient group fits sound ME/CFS definitions such as CCC or ICC then PWME they probably are. (ETA: Ah, I see they are Fukuda, not CCC or ICC. I'd say that means they shouldn't be calling it ME, but CFS is certainly justified since Fukuda is a CFS-specific definition.)

So, this could be a study of post-infective fatigue that could be useful to us in general. The conclusion is rather vague as a conclusion though. I mean, what did they conclude? The Conclusion is more of a summary. Maybe as we learn more about the paper, it's value to us will become more clear.

I'm still puzzled by this:
This in-depth exploration of fatigue in PIFS provides an overview of the dimensions, characteristics, and trigger mechanisms of fatigue, thus making better clinical observations, early recognition, improved communication with patients and more appropriate nursing interventions possible.
[my bolding]
Trigger mechanisms of fatigue? My ME 'fatigue' is not triggered by anything, and certainly not emotional, social, or self-pressure. Is this a translation thing and they mean PEM which is far from simple fatigue? Are they trying to characterize PEM, which would be useful if properly done. And what nursing interventions are appropriate for 'fatigue'?
 
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3,263
Trigger mechanisms of fatigue? My ME 'fatigue' is not triggered by anything, and certainly not emotional, social, or self-pressure.
Totally @SOC, nor mine. Just plain old physical exertion. Or sometimes just what my illness decides to do on the day.

I also agree that the disease name terminology they use is confusing and messy.

The triggers stuff seems to be based on actual comments by patients, although without respect to their relative frequency. So it seems that many patients mention physical or mental exertion as triggers of fatigue, but only one or two mentioned the emotional or financial stressors, and sometimes its not clear from the quote that this was a trigger for fatigue, exactly:
paper said:
“If I watched films, emotional things, like something that touched me I just had to turn such things off” (Amanda, 40s)

Its all a bit lightweight in places, but its overall message seems fairly appropriate:
paper said:
RNs and other clinicians should recognise fatigue as something distinct from depression and lack of motivation 47]. This study provides a broad in-depth understanding of the debilitating, complex nature of fatigue. Knowledge of its different dimensions, characteristics, and trigger mechanisms makes it possible to grasp the complexity and understand the consequences for the sufferer.

paper said:
Patients with PIFS and the general population have different perceptions of fatigue 13]. Thus, RNs and other health practitioners may have difficulties in recognising and understanding the patients’ fatigue experience. Patients’ perceptions are multidimensional, multifaceted, and heterogeneous in nature, and fatigue manifests itself in different ways. Because these patients are often misunderstood, listening to their language and illness experience serves as a diagnostic component. The findings of this study provide RNs with vocabulary and knowledge, making it easier for them to develop awareness and symptom recognition.
 

SOC

Senior Member
Messages
7,849
Thanks, @Woolie, that does make it all a bit clearer.

I suspect there may be some issues of translation as well. In some places I may be expecting precise scientific language when that's not always easy to achieve when translating scientific documents or writing in your non-native language. For example, what Amanda said I would never interpret as a trigger of fatigue, but more as some kind of intolerance. However, the loose translation of "an increase in some symptom(s) as a result of an emotional stimulus" might sound like "a trigger of the symptom under discussion."

Also, Lenny Jason does seem to like to focus on fatigue, where I prefer the focus to be on PEM. That's probably just a matter of professional perspective on his part. A researcher needs to tighten his/her focus; you can't study everything all at once.

Let us hope that this paper is a positive contribution to the overall understanding of PEM... or at least the fatigue associated with CFS.
 
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15,786
There was an excessive increase in fatigue in response to even minor activities. An increase in fatigue resulted in the exacerbation of other concomitant symptoms. The term fatigue does not capture the participants’ experiences, which are accompanied by a considerable symptom burden that contributes to the illness experience and the severe disability.

Did everyone notice this bit? Because they are saying that calling it fatigue is inadequate. So I'm really not sure why anyone is getting upset about this being a "fatigue" study. It may have started by investigating fatigue, but they certainly ended up in the right place.

It's an excellent and scientific way for them to refute the Oxford chronic fatigue paradigm.
 
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3,263
tbh, I skip over qualitative studies. The info is necessarily filtered through the researchers in a way that I dislike.

True. However, some narrative studies of MECFS have been unique in that they have actually listened to what the patients are saying, rather than just impose upon them an interpretation that is incorrect and demeaning. For example (note the last line):

Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies
Methods
: We compiled available qualitative studies and applied meta-ethnography to identify and translate across the studies. Analysis provided second-order interpretation of the original findings and developed third-order constructs from a line of arguments.
Results: Twenty qualitative studies on CFS experiences were identified. Symptom experiences and the responses from significant others could jeopardise the patients’ senses of identity. They felt severely ill, yet blamed and dismissed. Patients’ beliefs and causal attributions oppose the doctor's understanding of the condition. For the patient, getting a diagnosis and knowing more was necessary for recovery. Doctors were reluctant towards the diagnosis, and struggle to maintain professional authority. For patients, experience of discreditation could lead to withdrawal and behavioural disengagement.
Conclusion: The identities of CFS patients are challenged when the legitimacy of their illness is questioned. This significant burden adds to a loss of previously established identity and makes the patient more vulnerable than just suffering from the symptoms. CFS patients work hard to cope with their condition by knowing more, keeping a distance to protect themselves and learning more about their limits.
Practice Implications: Doctors can support patients’ coping by supporting the strong sides of the patients instead of casting doubt upon them
.
 
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True. However, some narrative studies of MECFS have been unique in that they have actually listened to what the patients are saying, rather than just impose upon them an interpretation that is incorrect and demeaning.

Yes, I've seen quite a few that seem keen to highlight real problems with how patients are treated, but I just don't think that they have the power to really change anything. These sorts of studies are of limited use for a condition where there's so much controversy and division imo. I don't feel that pointing people to them is likely to change anything important.

[Just noticed I'd used 'really' three times in three sentences... edit!]
 
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SOC

Senior Member
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7,849
Yes, I've seen quite a few that seem keen to highlight real problems with how patients are treated, but I just don't think that they have the power to really change anything. These sorts of studies are of really limited use for a condition where there's so much controversy and division imo. I don't feel that pointing people to them is likely to really change anything important.
Given the massive amounts of garbage the BPS school has put into the research base to make it appear the vast majority of understanding of ME/CFS is that it's psychogenic, any decent research to counter-balance it is valuable. We are fighting, among other things, a volume war here. They know what they are doing when they publish many, many half-assed papers. It's not the quality of content that sways the masses, it's the volume. Very wrong scientifically, but very real politically.
 

JaimeS

Senior Member
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3,408
Location
Silicon Valley, CA
Late to the party, but

the characteristic beyond time, when time passes unnoticed.

I get that whole time passing unnoticed thing, though. It's one of the weirder and more disturbing symptoms I've had since developing ME.

MEE TOOOO. This is one of those weird symptoms that I've never seen listed anywhere, but I experience it mostly when I'm sickest. If I've been lying in bed languishing like the Victorian heroine that I am, I'll say to someone, "so, a few days ago, when we -" and they'll say, "...that was over a week ago." Or, "was it last night or the night before that...?" It goes beyond just being confused, because I'm describing the situation that happened perfectly clearly, I just feel unsure of how much time has passed since then. I was wondering if it were neurological or just a function of being kind of out of it for a long time in a row - when you're out of it, the time passes 'differently', or you are less aware of it.

Had no idea anyone else was experiencing that symptom.

-J