Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis (2018) Evans & Jason

[Dolphin]

The effects of cognitive exertion on one person:

He described an instance in which he had severe exertional effects following the completion of a neuropsychological evaluation for his disability assessment. He stated: I had to do an interview for disability, a neuropsych evaluation… an all-day thing… um and I was in bed for three weeks. I was in horrible shape after that. I was essentially sitting at a desk for 8 hours.

 

[Dolphin]

Depression/sadness

Four participants described experiencing periods of depression following the onset of their illness. Many participants described how the depression came once they came to the realization that the illness may never resolve.

Participant 10 (onset over 2-6 months) described how the depression hit a year after her illness onset. (see FIGURE 4) She stated: Then after about a year, I’m starting to realize that this might not go away. This might take a while to go away. And I just started getting really depressed.” She elaborated further stating, “It was just like, this is insane, and you start to get really depressed. She also described the belief that her depression was not wholly psychological. She suggested that the depression was partly a physiological response to her illness and partly due to environmental reasons such as invalidation from others. It really lingered. I mean it’s been up and down for the past 25 years of the depression, and I think part of it is physiological. I think there is something about the illness that pushes people into the depression, and then I also think that it’s environmental, you know. I think that when your life has been limited in such a way and you’re not being validated as someone who has an illness that’s a very depressive situation.

 

[Dolphin]

Participant 5 (onset over 1 month) described how her doctor told her that she could exercise, which only worsened her condition. She described how she learned later on that exercise could worsen her prognosis(see FIGURE 3).

Exercising and activity after the onset of illness to worsen your prognosis so… I read that too late (laughs) and my doctors told me that I had CFS which you are allowed to exercise… and if they had known about any of …they would have said hey, cut this out, lay down.

 

[Dolphin]

One participant who had described stress as a partial precursor for her illness development elaborated on this theme by describing how her stress was “good stress” that involved positive milestones in life (e.g. raising children and buying a house). She stated “I was having the time of my life.”

 

[Dolphin]

Another participant commented on the exertional effects theme and described how many individuals with the illness “realize too late the benefits of pacing.” She discussed how participants often realize the importance of reducing activities after the exertional effects have already taken a severe toll on the body.

 

[Dolphin]

For example, a subset (21%) of participants reported the exact date of illness onset. As might be expected, all of these individuals described their onset as sudden. The qualitative findings of the current study reveal that the majority of individuals who endorsed a sudden illness onset did not name the exact date of onset. This finding suggests that requiring a specific date of onset could be too strict for determining mode of illness onset.

 

[Dolphin]

A subset (14%) of participants described the experience of an unnoticed illness progression. These individuals also described a steady progression of their illness in which symptoms and functional limitations slowly increased over time. Previous qualitative studies have not specifically identified or described this experience of an unnoticed illness progression. These findings have clinical implications, as individuals who do not recognize the progression of their illness until years later likely will not seek medical care and support as quickly as others who identify that something is wrong earlier in the illness development. This could ultimately impact the course, treatment, and prognosis of the illness

 

[Dolphin]

The majority of participants (93%) from the qualitative sample reported that a virus or infection was the cause of or partial cause of the ME or CFS onset. This finding is consistent with the quantitative findings in phase one. The majority of participants from the larger quantitative sample reported on the DSQ that an infection or virus preceded the illness onset. Furthermore, mode of illness onset did not differentiate individuals based on viral/infectious etiology. These results are also consistent with Ray et al. [22] who found that a subset of all three onset groups identified in their study (sudden, gradual, and phased) endorsed a viral/ infectious onset.

 

[Dolphin]

Stress, a controversial topic:

A small subset of participants (14%) reported that stress was a partial cause of their illness onset. Similarly Ray et al. [22] found that some individuals in their sample described “complex” onset contributory factors, which included a combination of infection, overexertion, and stress. Salit found that individuals with CFS (regardless of onset group) reported a higher number of stressful life events prior to CFS onset compared to a control group [42]. In contrast MacDonald et al. [43] did not find an increase in life stress in the year before the onset of CFS.

Thirty-six percent of participants described traumatic events over the course of their lives. Only one participant suggested that the cause of the illness was partially due to the trauma. Overall, the current study revealed that the majority of participants (86%) endorsed stressors in the year leading up to and following illness onset; however, the stress was not described as a precursor to the development of the illness, but rather something that exacerbated the illness.

 

[Dolphin]

Another controversial topic: whether people might have been working too hard before they got ill:

Many participants in the current study described the experience of working hard, and a small subset within this theme discussed the experience of “overworking” in the year leading up to their illness onset. In an anthropological study of the experience of CFS, Ware [44] writes about individuals’ descriptions of working hard in the year or years leading up to their illness onset. Ware described this hardworking behavior in terms of “type A” and “perfectionistic” characteristics that led many to feel exhausted. [44] While some participants in the current study indicated stress or exhaustion in the year leading up to their illness, the majority described their hardworking styles in a positive manner. Furthermore, this hard work ethic was often described in order to show the stark contrast to their considerably more limited lives (functionally and socially) following illness onset. In fact, all 14 participants in the current study described having active lifestyles including a range of both work and recreational activities. The findings from the current study suggest that when assessing for factors related to stress and functioning leading up to the onset of ME and CFS, it would be beneficial to include questions that assess for whether these activities were deemed stressful or taxing, as this may have implications for illness attributions and whether stressful experiences and lifestyles are truly perceived as contributory to onset.

 

[Dolphin]

Emotional impact and emotional support:

Many participants in the current study described the experience of working hard, and a small subset within this theme discussed the experience of “overworking” in the year leading up to their illness onset. In an anthropological study of the experience of CFS, Ware [44] writes about individuals’ descriptions of working hard in the year or years leading up to their illness onset. Ware described this hardworking behavior in terms of “type A” and “perfectionistic” characteristics that led many to feel exhausted. [44] While some participants in the current study indicated stress or exhaustion in the year leading up to their illness, the majority described their hardworking styles in a positive manner. Furthermore, this hard work ethic was often described in order to show the stark contrast to their considerably more limited lives (functionally and socially) following illness onset. In fact, all 14 participants in the current study described having active lifestyles including a range of both work and recreational activities. The findings from the current study suggest that when assessing for factors related to Qualitative findings from the current study suggest that the onset of illness had an emotional impact on more than 50% of participants. Some participants described going through periods of depression, whereas others described fear, anger and a state of confusion regarding the onset of the illness. This is consistent with findings from a mixed method study by Tuck and Wallace [58] who found that compared to a control group, women with CFS reported significantly higher levels of depression, anxiety, anger, and confusion following the onset of their illness. The experience of depression following onset was corroborated in qualitative interviews [58]. These findings suggest that the onset of ME and CFS can have a profound emotional impact on the sufferer. Individuals with ME and CFS could benefit from significant emotional and instrumental support from friends, family, and health providers during the earliest phase of illness development.

 

[Indigophoton]

Overall, the current study revealed that the majority of participants (86%) endorsed stressors in the year leading up to and following illness onset;

I wonder how many people in general have not had stressors in the years before and after any arbitrary event, though.

 

[Dolphin]

Corbin et al. discuss how patients who present to a health clinic for pain management are often coming with years of health experiences that influence how they react to treatment and to their providers. Specifically, they discuss how a patient who is branded as “difficult” by a health care provider is likely reacting to past experiences and interactions with previous providers as cited in [65]. Knowledge of a person’s illness history and previous interactions within the healthcare system can help providers shape the attributions they make about patients and it can lead to increased empathy and support. Given the lack of support that many participants in the current study experienced from health providers, friends, and family members, the illness timelines may provide a way for health care providers to better connect with their patients on an empathic level.

 

[Dolphin]

In summary, the qualitative findings and illness timeline graphs revealed that ME and CFS onset experiences are likely more complex than the dichotomous sudden versus gradual categorization that is ubiquitous in the ME and CFS literature.

[..]

the current study findings suggest that onset and illness progression may be even more dynamic and complex than it has been previously described in the literature. Specifically, the onset patterns revealed in the current study do not appear to be mutually exclusive (e.g. patients may identify with both sudden and steadily progressing/gradual onsets). These findings point to the need for further assessment of illness onset patterns and progression on larger and more representative populations. Furthermore, it is recommended that surveys designed to assess the onset experience include more than one question to assess mode of illness onset and illness patterns. In order to capture the complex ME and CFS onset experiences, surveys might include questions that assess the period of time in which an individual’s first symptoms were experienced, whether the individual perceived their onset as sudden (regardless of the period of time that their first symptoms developed), whether the illness progression was initially noticed, and whether it progressed in the form of a steady progression or a cyclical “wax and wane” pattern.

 

[Alvin]

Many participants described how the depression came once they came to the realization that the illness may never resolve.

Sounds like hopelessness. But that can't be depression is biochemical...

 

[Invisible Woman]

Another controversial topic: whether people might have been working too hard before they got ill:

Many participants in the current study described the experience of working hard, and a small subset within this theme discussed the experience of “overworking” in the year leading up to their illness onset. In an anthropological study of the experience of CFS, Ware [44] writes about individuals’ descriptions of working hard in the year or years leading up to their illness onset. Ware described this hardworking behavior in terms of “type A” and “perfectionistic” characteristics that led many to feel exhausted. [44]

It occurs to me that, for those whose initial illness was a slow and steady progression where they tried to maintain their workloads, there may be a risk of skewing results in questionnaires towards the Type A overworker stereotype.

As I became increasingly ill, with nothing apparently wrong, I tried to get on with it. I was aware that it seemed that I was working harder, achieving poorer results and it was taking me much longer.

If I filled in a questionnaire at this stage, or in the year or so after having to stop work, it might well look like I was a perfectionist overworking myself. This would be as a consequence of trying to cope with the illness rather than the cause of the illness though. The fact I was being told there was nothing wrong compounded this.

 

[Dr Carrot]

I do not have the spoons to read the full doc, so apologies if this is in there, but does it say anything about combinations of causes?

I.e., in my case, I had had a really traumatic two years of my life, which then ended with two viral infections one month apart, causing my onset of ME. I have no way of knowing this, but my hunch is that if only one of the factors was present I would have been less likely to get ME. That’s academic though really and easy to say in hindsight, maybe it would’ve happened anyway.

 

[Andy]

It occurs to me that, for those whose initial illness was a slow and steady progression where they tried to maintain their workloads, there may be a risk of skewing results in questionnaires towards the Type A overworker stereotype.

As I became increasingly ill, with nothing apparently wrong, I tried to get on with it. I was aware that it seemed that I was working harder, achieving poorer results and it was taking me much longer.

If I filled in a questionnaire at this stage, or in the year or so after having to stop work, it might well look like I was a perfectionist overworking myself. This would be as a consequence of trying to cope with the illness rather than the cause of the illness though. The fact I was being told there was nothing wrong compounded this.

I think this is very much the case, it certainly was with me. Also, how many of us, healthy or not, are that happy with the label of not trying to achieve as much as possible?

 

[Dolphin]

I do not have the spoons to read the full doc, so apologies if this is in there, but does it say anything about combinations of causes?

I.e., in my case, I had had a really traumatic two years of my life, which then ended with two viral infections one month apart, causing my onset of ME. I have no way of knowing this, but my hunch is that if only one of the factors was present I would have been less likely to get ME. That’s academic though really and easy to say in hindsight, maybe it would’ve happened anyway.

There were only 14 participants in the qualitative part of the study but if one adds up the individual causes there are a lot more than 14 so many people mention more than one. The individual figures show the different case histories of some individuals.

 

[Mithriel]

I hope everything will become clearer and we will have a better vocabulary to talk about this sort of thing with more and better research into exactly what ME is.

Actual Myalgic encephalomyelitis came in epidemics, including the one at Tahoe, so an acute viral onset has to be a major cause. My personal belief is that most, if not all, cases come from an infection, though that infection could be subclinical so not noticed. The virus, could be different ones, attacks the respiratory mechanism of the cell, either directly or causing an autoimmune reaction against an essential element.

This makes the ONSET sudden, even if the development of symptoms is GRADUAL.

I hope this is the case because it means we could develop a test to pick it up as soon as the slightest symptoms become apparent so that all the serious effects can be avoided.

This has actually happened with MS. Before the mid nineties no one was diagnosed as having MS until they were very disabled. Now you get an MRI with your first symptom and then get drugs, but even better can modify your lifestyle to keep as much health as possible.

Ramsay described relapsing/remitting episodes after a sudden onset as being the course of ME in about 50% of patients. (He felt 25% recovered completely from the initial illness so it could be that ME is an abnormal effect of an infection just like polio. So being stressed physically, mentally or by having more than one infection at the same time could all lead to a chronic form of the illness.)