Factors impacting the illness trajectory of post-infectious fatigue syndrome: a qualitative study of adults' experiences (2017) Jason et al

[Tom Kindlon]

Those who promote CBT and GET can give the impression that people can get stuck at low levels of activity unnecessarily but this does not seem like the experience for this cohort:

Impacting factors associated with the upward phase
Unhelpful internal factors
When improvement occurred and the energy level increased the participants experienced getting better and wanted to do more. As everyone had a strong wish to regain normalcy − that is, their pre-illness lifestyle − the participants continued to overestimate their capacity. When they overexerted themselves they experienced relapses, increased disability and symptom flare-ups that lasted for days, weeks or months. The upward phase was characterised by a pattern of improvement and setbacks:

That’s obviously what I’m doing [overestimating my own physical capacity]. I see the fact that I do it in everyday life too, because I feel very much better. Yeah [easy to overdo], especially now, it’s very easy to overdo (PT13).

 

[Tom Kindlon]

I'm quoting an awful lot of this, perhaps too much, I just think it's a useful paper highlighting what patients and patient organisations say and have experienced.

 

[Tom Kindlon]

Helpful internal factors
The participants regained some control through trial and error learning which made them realize that pushing themselves beyond their body’s limit drained them of their energy and made them worse. Thus they gradually became better at setting limits:

I’ve become good at saying no and setting limits... don’t wear myself out to satisfy other people’s need (P18); I’ve to be very rigorous, stingy regarding what I spend the energy on (P26).

After years of trial and error, the participants started noticing the body’s warning signals in order to find out its capacity to avoid or minimize relapses in everyday life:

[By] listening to the body and making the right choices and prioritizations I may come up to a level that I can be satisfied with, it’s a key to continue to get better than I’m today (P16).

The participants had realized during the turning phase that the way they had handled the situation during the downward trajectory was inappropriate. When they received the PIFS diagnosis, they actively started to seek information on how to handle their condition. They looked for information on the internet, in magazines, at support associations’ websites and elsewhere to obtain knowledge about PIFS and how to manage it:

It had been useful with some advice along the way: This is wrong. This you mustn’t do. You should stop. This is right (P10); [I’m] looking for rehabilitation options. Where can you find this or that? It’s a little harder to treat one-self. Self-treatment isn’t always as easy. It’s nice to have someone who can support (P2).

During the turning phase they had realized that their personal, professional and social activity level prior to the Giardia l. infection had become counterproductive because it increased their symptom burden and resulted in a severe decline in their abilities to function in all life domains. Thus, in the upward phase they began to modify their lifestyles and develop self-management strategies. Their focus of attention had shifted from the outer world − that is, on satisfying other people’s needs and complying with moral societal expectations − towards themselves and their own needs. They worked at coming to terms with being ill and determining how they could take care of themselves in order to regain health. Since the participants wanted to get better, they had to focus on themselves. This required them to lower the demands they put on themselves and let their own needs take priority over societal moral values:

At my sister’s I gave this message: “Enough is enough! I’ve to lie down on the couch.” I begin to learn that I’ve to pay a little more attention to my body (P20); We can tolerate that it does not necessarily have to be perfectly clean (P18).

Planning ahead, prioritizing, having pre-emptive rest, rest breaks, and post-exertional rests contributed to fewer incidents of crossing the capacity limit, more predictability and subsequent increased functional level for most of the participants:

take a nap in the afternoon before I’m going to meet some friends to endure a bit longer (P20); I’ve had to prioritize as tough as nails, become more critical of what I spend efforts and time on and whom I spend time with (P9).

The participants experienced that by making changes in their daily lives, adapting to their situations and channelling their energy in a more conscious way prevented stressful situations and facilitated a better balance between rest and activity:

That helped me… pacing… self-management... energy conservation (P2); [I’m] better at resting. I improve faster (P21).

The participants experienced that acquiring help and taking actions to lower their energy expenditure, including home help or child care assistance, moving to a more easily maintained living facility or more quiet surroundings and withdrawal from energy draining commitments, facilitated the opportunity to rest more. Therefore, they experienced an improvement in their functional level:

I had much more help… a great improvement (P24); I [moved] to an apartment with all facilities… close to the shops (P23).

All the participants were forced to reduce their activity levels to facilitate improvement, but how much depended on how severely affected they were. Those who were working realized they worked too much and either reduced working hours, changed to less strenuous jobs or stopped working. The students either reduced hours of studying per day, read far less than before, switched to more easy study subjects, skipped exams, and/or took leave or dropped out:

50%... a temporary job, much easier, less physically demanding than my ordinary job (P13); study only four hours… read much less, switched to more easy study subjects (P16).

 

[Tom Kindlon]

"Poor economy" equals poor financial circumstances

Impacting factors associated with the chronic phase
Unhelpful external factors
Many participants still experienced lack of support from the health care system and the social security system to obtain welfare benefits, or they struggled with poor economy and to get compensation from Bergen Municipality’s insurance company, ‘I can’t trust them’ (P2). A common refrain was, ‘Yes, it’s difficult to access help… requires very hard work… causes very much frustration’(P2). Poor economy and the fight to obtain benefits was a very energy draining emotional burden that seemed to hamper improvement.

 

[Jan]

Is there any chance the Nice committee will see this? This study perfectly describes patients lived experience. Everyone in health care ought to read this.

 

[Wonko]

Is there any chance the Nice committee will see this? This study perfectly describes patients lived experience. Everyone in health care ought to read this.

I would imagine they may define "evidence" in such a way that this isn't.

Cynical...me?

 

[Tom Kindlon]

Unhelpful internal factors

The loss of their prior lifestyle and functional ability provoked common reactive psychological worries. In addition, they still found it challenging to find their activity limit, thus there was still a risk for overdoing, even after four years:

I do too much, at work too, because of [an economic] need. I see how I go back to the old pattern again when I start feeling better, that’s probably very risky (P13).

Lack of energy and stamina, easy fatigability and high symptom burden made the participants feel older than they actually were. This coupled with a strained economic situation, was experienced as scary and emotionally draining:

I feel old prematurely... live like a loner, like an old lady. I feel like an octogenarian in a forty years old body. Everything hurts, stiff, weak… before I was very physically fit and climbed on walls and ran upstairs and carried things. That’s over. I’m so scared when I go from here… everything hurts… you are thinking, living like you are supposed to do when you are in your eighties. I feel like I’m drained. I feel like my body has gone through a huge process of... as if my body has been inside of a dishwasher for several years, or inside a dryer, [and] that my body has been thrown around, and nerves have been on edge (P10).

Many still suffered from IBS complaints. Some symptoms had abated, whilst others experienced the same symptom burden, or had become worse again:

The recent weeks have been the best in a long time (P4); I’ve become weaker and weaker than I’ve been the last years, much more fatigued… like a zombie at home (P29); Stomach pain, diarrhoea and sweating all day… the body trembles, headache and the stomach growls, flatulence (P20).

The experiences of being severely incapacitated, having a poor economy and lacking financial support from the social security system or insurance company made participants force themselves to work to provide for themselves and their offspring. This made their everyday very emotionally challenging, drained them of energy and seemed to be counterproductive in regard to improvement of health:

I have no social life… a limited quality of life, to say the least. What should I do? What is right? But I have not ... I can stop working, I might lie down, but I have no one that puts bread on the table for me and my daughter the next day [if I don’t have income]. What do I do then? Will the Child Protection Services take my daughter away? (P10).

The participants trying to maintain full-time work needed longer and longer sick leaves. Those who tried hardest to keep going exhausted the body more and more and eventually dropped completely out of work or studies. Others were able to work or study part time, less than 50%.

I’m on disability benefits (P20); Now it’s fifty-fifty for me when I’m working 50%… 50% welfare benefits (P26); I’m much better… at school six hours every day, max (P16).

How much the participants had improved their functional level during the natural course of four years varied a great deal as a few had hardly or only slightly improved whilst some had improved markedly, and a few had experienced a new decline. However, none of the participants had regained pre-illness health or functional level.

Despite a high symptom burden, the participants were not pre-occupied with attributing symptoms to a physical cause as they already were aware that their symptoms emerged in the wake of an objectively confirmed infectious disease.

 

[Tom Kindlon]

 

[Hoopoe]

Wow this paper is pretty good.

How much the participants had improved their functional level during the natural course of four years varied a great deal as a few had hardly or only slightly improved whilst some had improved markedly, and a few had experienced a new decline. However, none of the participants had regained pre-illness health or functional level.

Joke: clearly they haven't had the chance to be cured in 48 hours by a LP therapist .

 

[Tom Kindlon]

Helpful internal factors


With proper diagnosis, education and years of experiential trial and error learning, the participants were more competent and confident in managing their daily lives. Listening to their bodies and adapting to their needs increased their functional capacity. With increased energy levels, the intolerances to sensory stimuli abated to varying degrees, and the participants were able to more or less take part in social life, see friends and enjoy cultural events, with a few exceptions: ‘The social life with concerts and theatre, and cinema and lots of people, I’ve had to put on hold. I feel a bit like I’m heading back now, and that’s very good’ (P14).


Most participants had improved their cognitive abilities, but this had not happened to everyone. As one individual said, ‘I have no memory. What happened last week, it’s gone’ (17).


Despite being ill for four years, being more or less unable to function and having a limited quality of life, the participants had an optimistic view of their future, wanted to get better, and had a strong wish to become productive individuals and optimize their potential for a higher functional level or becoming healthy again: ‘I hope I'll still get better’ (P16). However, some had no social life, and many were uncertain about the future as they were aware of the risk of relapses:


I’ve no social life [today]… Life will never be as before. I might have done something wrong and will be damaged for the rest of my life, and the quality of life will be limited, but I want to maintain hope (P10).


The self and the body were more in balance, as the participants had improved their abilities to set limits and use self-management strategies: ‘I take very small steps at a time. [I’ve] been burned so many times that I’m not betting more than that’ (PT17).