Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome 2016 Prendergrast, Jason et al

Objectives
The objective of this study was to examine individuals with myalgic encephalomyelitis and chronic fatigue syndrome who are confined to their homes due to severe symptomatology. The existing literature fails to address differences between this group, and less severe, nonhousebound patient populations.

Methods
Participants completed the DePaul Symptom Questionnaire, a measure of myalgic encephalomyelitis and chronic fatigue syndrome symptomology, and the SF-36, a measure of health impact on physical/mental functioning. ANOVAs and, where appropriate, MANCOVAS were used to compare housebound and nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome across areas of functioning, symptomatology, and illness onset characteristics.

Results
Findings indicated that the housebound group represented one quarter of the sample, and were significantly more impaired with regards to physical functioning, bodily pain, vitality, social functioning, fatigue, postexertional malaise, sleep, pain, neurocognitive, autonomic, neuroendocrine, and immune functioning compared to individuals who were not housebound.

Discussion
Findings indicated that housebound patients have more impairment on functional and symptom outcomes compared to those who were not housebound. Understanding the differences between housebound and not housebound groups holds implications for physicians and researchers as they develop interventions intended for patients who are most severely affected by this chronic illness.

Paywall, https://journals.sagepub.com/doi/10.1177/1742395316644770

 

"Housebound status
The DSQ includes a measure that asks participants to describe their fatigue/energy related illness.25 Participants that responded either “I am not able to work or do anything, and I am bedridden,” or “I can walk around the house, but I cannot do light housework,” were classified as Housebound. Participants that responded “I can do light housework, but I cannot work part-time,” or indicated more functioning (participating in family responsibilities, working part-time or full-time) were classified as not housebound."


The question they used was:
Which statement best describes your fatigue/energy related illness during the last 6 months? (Check one)
 I am not able to work or do anything, and I am bedridden.
 I can walk around the house, but I cannot do light housework.
 I can do light housework, but I cannot work part-time.
 I can only work part-time at work or on some family responsibilities.
 I can work full time, but I have no energy left for anything else.
 I can work full time and finish some family responsibilities but I have no energy left for anything else.
 I can do all work or family responsibilities without any problems with my energy."

I have issues with their definition of housebound, and believe that it is likely to be more nuanced. For example, I can effectively work part time, at home, and do light housework, because I pace myself to the extent where I am housebound the vast majority of the time. Should I 'count' as housebound? If not, why not? According to this paper I wouldn't because I 'work', yet I am housebound the vast majority of the time.

 

And working at home is physically less onerous than “light” housework.

Not that improved nuance would likely have led to more interesting conclusions; the discussion above is noddy-level.

 

@Andy


Agreed. These questions are not specific, nor detailed enough for pwME. These definitions should not be so cut and dried.

I think some of the crucial things to ask in these questions are can you do these activities reliably and as needed. If the dusting needs doing, can you within a reasonable length of time do it? And, do you need to rest up before and after you do the dusting? Do you become more symptomatic during or after mild activities such as dusting? What happens if you do short-term, moderately vigorous activity? Do you need to rest up before and after the activity? Do you become more symptomatic during or after the activity? How much time per day do you spend resting?

Due to using pacing, PwME may be able to do various levels of activity. But that doesn't mean they don't pay before, during and after, as regards increased need for rest and symptom increases.

This reminds me of the perennial problem we face around appointments with doctors. PwME may do extra resting to hopefully build up energy to do an in person consult. Then, need rest for maybe several days post consult. Unfortunately the physician gets the impression the pwME is much healthier than they really are.

 

I’m a hybrid CFS patient. Can be housebound/bedbound for 6 months at a time then magically ‘appear’ to be normal in public for 6 months-2 years at a time.

 

My energy, physical, and cognitive capabilities are always compromised, and have limitations, where I just come to a halt with activity before it's complete. I literally have to stop and rest right away, either due to POTS or other increased symptoms of ME.

There is no consistency as regards being able to do things. The symptom burden, and the need to mitigate it by rest are the only constants for me.

In another thread, @duncan said something to the effect of "We don't rest, we stop."