A new study was published recently in the journal Chronic Illness, entitled Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome by Pendergrast et al. The authors of the paper included the well-known ME/CFS researchers Julia L. Newton and Leonard Jason. Newton is most often recognized for her studies in muscular function in ME/CFS, and Jason for his frequent, often advocacy-oriented studies on ME.
Very few studies on ME/CFS focus on housebound patients — 0.5%, or 5 for every 1000 studies, according to Pendergrast et al. — and those that do tend to have very small numbers of participants, by necessity.
[They] confirmed the oft-cited statistic that approximately 25% of people with ME are house- or bedbound.
At first glance, the housebound vs nonhousebound study seems very straightforward: Pendergrast et al. aimed to help prove that housebound patients are genuinely, objectively sicker than their more mobile counterparts.
Participants in the study received the DePaul Symptom Questionnaire, specifically aimed at ME/CFS symptoms, and the SF-36, which measures physical and mental function. Four groups of patients were involved: one from the U.S., one from the U.K., and two Norwegian cohorts. The U.S. sample only required that patients self-identify as having ME/CFS; however the DePaul Symptom Questionnaire, which includes questions that relate to the CCC, ICC, and Fukuda criteria, was utilized to ensure that patients had the symptoms of the disease. The U.K. sample was composed of participants who had been referred to Newcastle-upon-Tyne Royal Victoria Infirmary clinic for symptoms of ME/CFS. The Norwegian cohorts were gathered from a CFS self-management program and from inpatients and clinic patients at a multidisciplinary ME/CFS center, respectively. The study surveyed over 500 patients in total.
The researchers did come to the conclusion that bedbound and housebound patients were more ill than patients who were not, at least as far as can be determined by questionnaire. However, they arrived at some conclusions that came as a relative surprise, and confirmed other, oft-cited statistics about ME. Here are some of the findings of the study:
- Approximately 25% of patients are housebound or bedbound.
- Only 13.5% of patients are able to work. This figure includes patients who work part-time.
- A relapsing-remitting course, in which the patient’s symptoms sporadically worsen, then improve, is significantly more common in minor-moderate patients than in severe patients.
- The sicker an ME patient becomes, the less likely they are to believe their symptoms are ‘in their head’.
- Approximately 2/3 of patients reported that their illness had an infectious onset. The next most common trigger listed by patients was severe stress. Patients had the option to list multiple triggers for their illness.
- Very similar percentages of patients reported rapid (<1 month), gradual (<1 year) and slow (>1 year) onset. Patients who were severe were more likely to have experienced a rapid onset; however, many minor-moderate patients also described their illness as rapid onset.
- There were no differences on emotional or mental scores between severe, minor, and moderate patients. In other words, psychological wellness and emotional distress were not linked to illness severity.
- Housebound patients’ fatigue was less likely to be alleviated by rest.
- Post-exertional malaise (PEM) generally lasts more than 24 hours.
The answer choices for the duration of PEM symptoms were: less than an hour, 2-3 hrs, 4-10 hrs, 11-13 hrs, 14-23 hrs, and more than 24 hours. These are unusual answer choices, considering that the 1984 Holmes criteria, the Fukuda criteria, and the Canadian Consensus Criteria all describe PEM as lasting 24 hours “or more”.
The survey supported previous findings regarding PEM, with about 2/3 of patients responding that it took them a day or more to recover after exertion.
…psychological wellness was not linked to illness severity.
With the study’s estimated 1,000,000 people in the U.S. as suffering from ME/CFS, and the repeated finding of approximately a quarter of these patients being housebound, the researchers concluded that 250,000 people from the U.S. alone are house- or bedbound. The researchers identify “…general practitioner(s’) failure to recognize and believe patients’ experiences, failure to make appropriate referrals, and failure to appropriately diagnose the illness” as factors that contribute to poor doctor-patient relationships in ME/CFS and contribute to the suffering of those with the disease.
Pendergrast et al. closed by stating that there was a good chance that despite their recruitment methods, their study still did not include those with the most severe cases of ME/CFS.
7 thoughts on “Jason study compares housebound and non-housebound patients”
A very helpful summary, thank you, Jaime
Thank you, Simon!
Thank you for making this evidence available. Very clearly written summary.
The MOST important question is yet to be asked. Of the patients who are not housebound at the time of this survey, how many have been housebound for extended periods in the past: a). more than 1 month; b). more than 6 months; c.) more than 1 year). And How many have had relapses that left then housebound for more than 1 extended period.
That is a critical question. Been ill over 20 years with periods of being better linked to having truly decent, supportive care from a brilliant physician.
Am pretty much housebound and very ill the past 4 years since I moved back home to Boston area. My “family” and “friends” abandoned me and my medical care is unaffordable and poor quality.
I know exactly when and why each phase of illness has occurred. The lack of proper medical care and the lack of government interest in us speaks volumes.
I do not know what to do and am afraid am going to just die here alone.
Lizbeth~my heart aches for you; for all of us. We are too sick to “help ourselves” improve our situations. So what are we supposed to do? Not all of us have family/friends who are supportive. This illness is systemic all right; Mind Body & Soul.
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