August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Nov 29, 2015.

  1. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,220
    Likes:
    16,010
    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
     
    Valentijn, Woolie and Marky90 like this.
  2. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,459
    When did post infectious fatigue syndrome become equivalent to ME?
    This is a list of triggers for fatigue? o_O
    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.
     
    MEMum, Woolie, nandixon and 2 others like this.
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    1,986
    Likes:
    5,027
    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.

     
    SOC likes this.
  4. halcyon

    halcyon Senior Member

    Messages:
    2,269
    Likes:
    5,313
    Seriously. This is exactly what Ramsay said ME isn't:
    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.
     
    ahmo likes this.
  5. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,459
    :depressed:

    We just can't escape those ice-holes, can we?
     
    Richard7 likes this.
  6. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,459
    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:
     
    Last edited: Nov 29, 2015
    CFS_for_19_years and halcyon like this.
  7. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

    Messages:
    1,930
    Likes:
    14,526
    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.
     
    JaimeS, Esther12, Valentijn and 3 others like this.
  8. daisybell

    daisybell Senior Member

    Messages:
    1,601
    Likes:
    7,354
    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....
     
    Valentijn and Woolie like this.
  9. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

    Messages:
    1,930
    Likes:
    14,526
    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.
     
    MEMum and Valentijn like this.
  10. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,459
    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:
    [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'?
     
  11. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

    Messages:
    1,930
    Likes:
    14,526
    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:
    Its all a bit lightweight in places, but its overall message seems fairly appropriate:
     
    Valentijn likes this.
  12. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,459
    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.
     
    Woolie likes this.
  13. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,781
    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.
     
    JaimeS, Woolie and SOC like this.
  14. Esther12

    Esther12

    Messages:
    8,449
    Likes:
    28,507
    tbh, I skip over qualitative studies. The info is necessarily filtered through the researchers in a way that I dislike.
     
    worldbackwards, MEMum and Woolie like this.
  15. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

    Messages:
    1,930
    Likes:
    14,526
    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):

     
    JaimeS, Valentijn and SOC like this.
  16. Esther12

    Esther12

    Messages:
    8,449
    Likes:
    28,507
    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!]
     
    Last edited: Nov 30, 2015
    Woolie likes this.
  17. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,459
    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.
     
  18. JaimeS

    JaimeS Senior Member

    Messages:
    3,165
    Likes:
    11,616
    Mid-Ohio Valley, United States
    Late to the party, but

    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
     
    MEMum and Ritto like this.

See more popular forum discussions.

Share This Page