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Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID‐19 containment, 2021, Moncorps et al

Discussion in 'PsychoSocial ME/CFS Research' started by Wyva, Apr 8, 2021 at 6:26 AM.

  1. Wyva

    Wyva Senior Member (Voting Rights)

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    Abstract

    The COVID‐19 pandemic has focused health systems on supporting patients affected by this virus. Meanwhile in the community, many other contained patients could only use self‐care strategies, especially in countries that have set up a long and strict containment such as France. The study aimed to compare coping strategies deployed by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS; a poorly recognised syndrome) to those with better known and referenced chronic conditions.

    An online flash survey was conducted during the containment period in partnership with French Patients Organizations including ME/CFS national association. Therefore, ‘Brief COPE’ version of Lazarus and Folkman's Ways of Coping Check List has been adapted to the specificity of the containment. The survey was e‐distributed in France from 15 April to 11 May 2020. Differences of coping strategies were analyzed using Wilcoxon–Mann–Withney test.

    Amongst 637 responses, 192 were complete, presenting a wide variety of diseases, including 93 ME/CFS. The latter have significantly different coping strategies than recognised diagnosed diseases patients: similar uses of emotion focused coping but less uses of seek social support and problem‐focused copings.

    In conclusion, coping strategies are different for those who deal with the daily experience of ME/CFS, highly disabling chronic condition with diagnostic ambiguity, low degree of medical and social recognition and without treatment. Better understanding of those strategies is needed to provide the means for health promotion researchers, managers and clinicians, to accompany those patients.

    Open access: https://onlinelibrary.wiley.com/doi/full/10.1111/hsc.13376
     
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  2. Tia

    Tia Senior Member (Voting Rights)

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    I find this interesting, except this bit:

    "4.4 Emotion as an inseparable dimension of living with ME/CFS
    Ways of dealing with the overall illness cannot be separated from those of dealing with associated emotional distress. The latter is probably consubstantial with unrecognised medical diagnosis, leading Ray et al. (1995) to propose that coping directed specifically at emotion could be seen as ‘problem focused’ in the context of CFS to the extent that emotional distress is itself considered as part of the syndrome. This is consistent with the finding of Jason et al. who compared four groups (idiopathic chronic fatigue, medically explained fatigue and no fatigue) and noted that CFS patients had the lowest optimism scores and satisfaction with their social support (Jason et al., 2002)."

    (italics mine) Since when has emotional distress been a part of the syndrome? Or are they saying that it is part of it because it is unrecognised and untreatable?

    Surely our coping methods are emotion focused rather than problem focused because there are very few problems that are actually solvable and so better to focus on managing our emotional response to our issues rather than trying and failing to solve them.
     
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  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I know some say emotional lability is a symptom of ME. Personally, I find that to be a symptom of deep PEM.

    Most of my coping is very much of the problem solving type rather than managing emotions. Keeping my daily life running as smoothly as possible and adjusting my expectations of what is strictly necessary helps manage PEM and in turn that will keep how I feel about it on a fairly even keel.

    If I find myself get unduly angry, upset or frustrated by a situation I tend to view that as a warning sign that I need a nap.

    If anything I would say I worry less and focus less on my emotional responses now than I did when well. That's after 2 decades of illness though and maybe that makes a difference? I have learned there's no point in wasting energy wondering why I feel the way I do when that feeling might disappear after a nap or when I've rested up for a few days.

    I suppose that having thyroid problems that can make you more pessimistic until my T4 is adjusted and having had some hormone issues that can affect mood mean I tend to look at excessive emotion or feeling a particular way for no particular reason is often a symptom of another problem. So I look to address that problem.
     
  4. Trish

    Trish Moderator Staff Member

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    I wonder whether they mean emotions directly related to being ill, such as feeling sad about losing out on normal daily life, fear of losing a job or home, anxiety about coping day to day, anxiety about triggering PEM, being naturally distressed by pain etc.

    Or do they mean 'emotional lability' - that the disease itself makes one intrinsically more prone to having emotional reactions to things that wouldn't have made them emotional when well, or less able to cope with emotions.
     
    Last edited: Apr 8, 2021 at 11:50 AM
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  5. Mithriel

    Mithriel Senior Member (Voting Rights)

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    That finding reflects a sane, rational response to the situation they experience. We have no treatments, a lifelong illness that can suddenly worsen to an extremely low level of functioning. In a similar way to other severe chronic illnesses our greatest hope is not to get worse.

    Similarly, we are denied the social support that would automatically be given to someone of identical abilities but diagnosed with a better acknowledged illness such as MS. Of course satisfaction with social care is lower.
     
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  6. Kitty

    Kitty Senior Member (Voting Rights)

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    I suspect a lot depends on how long you've been ill. If you've recently lost your income, home, or relationship, or you're struggling to care for your children, of course you're going to be emotional. After 45 years, it's impossible to get emotional about something you can't even remember not having.

    The only time I've ever had ME-related emotion is when I was finally diagnosed after struggling with it for 23 years. It was relief, though, that I finally had something to call it!

    Someone once asked me what I'd do if I recovered. I was struggling to visualise it until I realised that I wouldn't actually be doing anything different at all, because I already do the things I enjoy. They'd just be less complicated without the mobility aids, and I could do them more often or for longer.
     
  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think this is spot on. No matter how well you cope with a situation, eventually you adjust whether you like it or not (something BPSers struggle to get their heads around).

    I was devastated that my career & home was put at risk, years of hard work potentially down the drain with all my hopes and future plans. No support or any practical help being available just made it harder.

    Eventually, you get through it, no matter how hard.

    The emotional reaction of someone whose whole life has just been thrown up in the air is going to be different to someone who has eventually managed to get through that and lived for decades with the kind of medical and social injustice we face.
     
  8. Mij

    Mij Senior Member (Voting Rights)

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    Menopause can also add a new sharp twist to the mix on top of ME. So there are variables depending on age too. I'm not the same since menopause, everything has to go smoothly now or I lose it.
     
  9. Tia

    Tia Senior Member (Voting Rights)

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    I feel similarly. I definitely think that my relative emotional stability now is something that I've built up over the course of many years. I did struggle with the grief of losing so much at the start of my illness. I wonder if the thought process you mention here could be classed as an emotional coping strategy? Not everyone is able to view their emotional reactions in this way, lots of people get so 'caught up' in their emotions they're not able to notice it and implement practical strategies to deal with it like napping or resting.

    I read the section above as saying that 'emotional distress' is a key symptom of ME which I'd not heard before. Personally, I don't feel emotional distress is intrinsic to the illness itself. It shouldn't be a distinguishing diagnostic factor in ME like it is in a condition like anxiety. That's not my experience at all, I'm always quite amazed that after a tricky few years at the start, my mental health is now pretty good despite my ME being pretty bad. I wouldn't say I have more emotional distress now on a day to day basis than any of my healthy friends. But it is definitely the case that emotional distress is a part of the experience of ME because of the emotions related to being ill as you list Trish.
     
  10. Trish

    Trish Moderator Staff Member

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    Not my experience either. I don't think I'm any more or less emotional because of my ME.
     
  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Personally, I think it's a stretch to class recognition that your emotional reaction is affected because you're in PEM and have overdone it as emotional coping.

    If anything, for me, I would class it as partly an issue with cognitive processing and partly an issue with how my body might react to extra adrenaline being released because I've overdone. In cognitive terms when I'm overloaded I will get annoyed very quickly and I'm also likely to over focus on one thing - probably because I'm losing capacity for higher reason.

    I am the type of person who is fairly fiery by nature. Quick to anger & quick to laugh. Even when well, if I was grappling with a technical problem and getting stuck in woe betide anyone who broke my concentration.
     
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    One thing I will note that for pwME and other debilitating conditions that restrict to the same level - we still face all the problems of daily life but no longer have access to typical safely valves & coping mechanisms.

    A fairly silly example might be I finally manage to clean the bathroom mirror & sink. Then let's say IM comes along & splashes toothpaste on the mirror and edge of the sink and I notice just before he goes off to work leaving the lid off the toothpaste. Annoying. We might exchange words. He goes to work and spends his day sorting out all sorts of different problems at work. I don't get a change in environment & while I won't deal with the same number of problems as him I won't have anything to distract from toothpaste -gate either. It's easy to lose perspective.

    Typically, I would go for a walk or a swim when something was bothering me. Some physical activity to burn off the bad humour. That's no longer available to many of us.

    Often chatting things over with a friend is helpful to keep perspective. Most of us just aren't well enough for this option either. When we are the last thing we want to do is moan - we want a nice gossipy chat as a distraction!

    Most of the people I know who have ME, especially those who've survived the initial awful years are quite balanced and good humoured people. If you want to know how to maintain emotional balance and mental health while dealing with very trying circumstances then you could do worse than look at how ME patients cope, I think.
     
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    I find that I get far more snappy than I normally am if I have to over exert and drain my energy. But I don’t see that as a part of the illness it’s the impact of exacerbation of pain, cognitive challenges, sensory overload
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Well, yeah, they're literally denied to us. On purpose. By design. Just like poor people have less use of private jets and live-in nannies. We very much want those, but they are explicitly denied despite continuous demands. So the focus has to be not on us but on why things are as they are. By design.
     
  15. Mij

    Mij Senior Member (Voting Rights)

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    I have developed a way of tuning people out when my physical and cognitive energy has reached its limit. I start to refocus on how to end the conversation and become very short with people, which may come across as being anxious and stressed out.
     
  16. Kitty

    Kitty Senior Member (Voting Rights)

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    Yes, I'm snappy too when I'm at my limit, but then again I always was. The only thing different is the inability to recall the particular swear word I wanted to use, because my brain's seized. :laugh:
     
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  17. Tia

    Tia Senior Member (Voting Rights)

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    Exactly this! I couldn't agree more.
     
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  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I've seen emotional lability noted as a symptom of ME. Reacting with anger, anxiety, frustration etc., only stands to reason when pwME's lives are turned upside down by this disease, and the additional devastating sequelae. In general, people and systems don't get this. If you're sick, medical personnel, social services and others are concerned and helpful, right?:rofl::rofl::rofl:

    It is also logical that pwME would have negative reactions to feeling grim, dreadful, and miserable due to the plethora of trying symptoms we have. Add in numerous mistreatments from disbelievers, and it makes for a tough situation.
     
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  19. Wonko

    Wonko Senior Member (Voting Rights)

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    I wouldn't classify myself as being emotionally distressed.

    I am, on occasion, sad, miserable, anxious, whatever, but emotionally distressed, as a generalised state, no.

    I have however noted emotional lability, generally caused by environmental factors causing too high a drain on my resources. Things like echoey places with too many people in, I can't keep track of everything and this impacts me. Impotent frustration that I have to be there, but can't do anything to cut the drain, can turn into anger etc. If it's bad enough then I lock up, I can't process the people and environment fast enough to even be able to figure out where my next step should go etc., so I can't move without help.

    I no longer enter this sort of environment, which basically means I can't go in shopping centers/malls etc, or even some types of shops. Hospitals can also be 'problematic', I think as much down to the shape of them, corridors/waiting areas/etc. as the people/noise characteristics etc.
     
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  20. Mij

    Mij Senior Member (Voting Rights)

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    I went to Costco twice with a friend and I will never go back. The store layout is constantly changing and the aisles are not labeled. My heart started racing the minute I walked in and I felt overwhelmed. It's an ME nightmare.
     
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