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[/fright]The missing 25%. The home bound. Isolated, rarely seen and rarely studied. They're like a black box but some light is being shown on them. The CDC's multi-site study is including them, the Open Medicine Foundation study is focused entirely on them, and Lenny Jason (who else?) just published a study highlighting them.
Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome. Pendergrast T, Brown A, Sunnquist M, Jantke R, Newton JL, Strand EB, Jason LA. Chronic Illn. 2016 Apr 28. pii: 1742395316644770. [Epub ahead of print]
There's certainly reason to think that home bound patients might be more prevalent in chronic fatigue syndrome (ME/CFS) than in other diseases. Studies indicate, after all, that people with ME/CFS are as or more functionally limited than people with type II diabetes, multiple sclerosis, congestive heart failure and end-stage renal disease. They also have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia. One study, found only an astonishingly low 13% were employed full-time.
Now Lenny Jason gives us the first really substantial study on the prevalence of homebound patients in ME/CFS.
He gave the DePaul Symptom Questionnaire (DSQ) to over 500 people with ME/CFS in Chicago, the U.K. and Norway. The DSQ asks 99 questions that assesses everything from symptoms, to type of onset, to functional status.
Results
The 25% rule - that 25% of people with ME/CFS are severely disabled - unfortunately held true. Almost twenty-five percent of the people surveyed reported that they were housebound. (That translates to about 250,000 people with ME/CFS housebound in the U.S.)
It was no surprise to see that symptom severity/fatigue/quality of life etc. were all significantly worse in the housebound patients. Or that the housebound have a greater propensity to relapse after minor exertion and are more socially isolated.
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[/fleft]The almost complete withdrawal from work in all patients was staggering. Even the non-housebound patients spent only an average number of 8 hours over the past month on non-household work. Remarkably, less than 10% of the patients surveyed were employed full-time and less than 20% were employed part-time.
The survey gave little help to those hoping to prove the homebound patients were simply more "psychiatric" than other people with ME/CFS. It suggested they were just sicker. That mood disorders were not more amply distributed in the housebound patients indicated that mood disorders are not a factor in who becomes housebound or not.
In fact, the survey suggested that the housebound patients were coping about as well as the non-housebound patients. Neither psychological well-being or emotional distress correlated with illness severity; i.e. neither were factors in people becoming housebound.
The fact that duration of illness played little role in determining who was housebound and who was not suggested that progression of illness is not so much a factor as the extent of the original illness; i.e. some people simply get hit harder by than others.
Somewhat surprisingly, only 53% of the non-housebound patients believed that their illness was "definitely physical". The vast majority of non-housebound patients (83%), however, were sure that there illness was at least "mainly physical". (The housebound patients, on the other hand, were pretty darn clear that their illness was physical.)
Symptoms
The relatively low percentage of non-housebound patients reporting that they experience post-exertional malaise (66%) raised questions either about the patients in the sample, or the universality of that symptom. Some people with ME/CFS who are very fatigued and quite functionally limited do not experience much post-exertional malaise. (Check out this Forum thread - "Is There A Subset That Doesn't Crash?".)
The two - fatigue and PEM - are certainly not synonymous. One study found high rates of fatigue and very modest rates of postexertional malaise in multiple sclerosis patients, and somewhat lower rates of fatigue and much higher rates of postexertional malaise in ME/CFS.
Higher rates of refreshing sleep than PEM were found. Muscle pain was easily the most common pain symptom found with joint pain next, then headaches and bloating. The most common cognitive problem was difficulty paying attention, followed by problems remembering things.
The study suggests that alcohol intolerance may not be as universal as has been thought with about 40% of all patients reporting it.
The Homebound Disease? ME/CFS and Other Chronic Illnesses
Punch "homebound" into the PubMed search bar and you'll almost invariably find the words older or elderly next to it in the citations it brings up. Many people in the U.S. are home bound but most of them appear to be elderly. One study found that 68% of homebound patients were over 80 years old. (Compare that to Jason's finding that the average age of the homebound ME/CFS patients was 44 years old.) A recent national assessment found that almost 400,000 people over the age of 65 were completely homebound, and about 1.5 million were mostly home bound.
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[/fright]I was unable to find any prevalence studies on homebound prevalence in M.S., lupus, diabetes or cancer. Remarkably, more studies have been devoted specifically to homebound ME/CFS patients than to homebound patients with heart disease. Heart disease gets over $1 billion a year in funding from the NIH. If homebound care in heart disease was a big issue we would see studies on it, yet I couldn't find a single study that attempted to assess the prevalence of homebound heart disease patients. (At least two have been done in ME/CFS.)
It appears that diseases featuring large numbers of young homebound patients are few and far between. People with other diseases who become homebound probably do so temporarily or the percentage so small as to not warrant research.
ME/CFS appears to have an almost unique ability to knock people out of the work force and back into their homes. The value of studies like these is not to validate what the ME/CFS community already knows, but to communicate to those outside the community how serious it can be. Hopefully, the NIH is listening.
Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome. Pendergrast T, Brown A, Sunnquist M, Jantke R, Newton JL, Strand EB, Jason LA. Chronic Illn. 2016 Apr 28. pii: 1742395316644770. [Epub ahead of print]
There's certainly reason to think that home bound patients might be more prevalent in chronic fatigue syndrome (ME/CFS) than in other diseases. Studies indicate, after all, that people with ME/CFS are as or more functionally limited than people with type II diabetes, multiple sclerosis, congestive heart failure and end-stage renal disease. They also have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia. One study, found only an astonishingly low 13% were employed full-time.
Now Lenny Jason gives us the first really substantial study on the prevalence of homebound patients in ME/CFS.
He gave the DePaul Symptom Questionnaire (DSQ) to over 500 people with ME/CFS in Chicago, the U.K. and Norway. The DSQ asks 99 questions that assesses everything from symptoms, to type of onset, to functional status.
Results
The 25% rule - that 25% of people with ME/CFS are severely disabled - unfortunately held true. Almost twenty-five percent of the people surveyed reported that they were housebound. (That translates to about 250,000 people with ME/CFS housebound in the U.S.)
It was no surprise to see that symptom severity/fatigue/quality of life etc. were all significantly worse in the housebound patients. Or that the housebound have a greater propensity to relapse after minor exertion and are more socially isolated.
[fleft]
The survey gave little help to those hoping to prove the homebound patients were simply more "psychiatric" than other people with ME/CFS. It suggested they were just sicker. That mood disorders were not more amply distributed in the housebound patients indicated that mood disorders are not a factor in who becomes housebound or not.
In fact, the survey suggested that the housebound patients were coping about as well as the non-housebound patients. Neither psychological well-being or emotional distress correlated with illness severity; i.e. neither were factors in people becoming housebound.
The fact that duration of illness played little role in determining who was housebound and who was not suggested that progression of illness is not so much a factor as the extent of the original illness; i.e. some people simply get hit harder by than others.
Somewhat surprisingly, only 53% of the non-housebound patients believed that their illness was "definitely physical". The vast majority of non-housebound patients (83%), however, were sure that there illness was at least "mainly physical". (The housebound patients, on the other hand, were pretty darn clear that their illness was physical.)
Symptoms
The relatively low percentage of non-housebound patients reporting that they experience post-exertional malaise (66%) raised questions either about the patients in the sample, or the universality of that symptom. Some people with ME/CFS who are very fatigued and quite functionally limited do not experience much post-exertional malaise. (Check out this Forum thread - "Is There A Subset That Doesn't Crash?".)
The two - fatigue and PEM - are certainly not synonymous. One study found high rates of fatigue and very modest rates of postexertional malaise in multiple sclerosis patients, and somewhat lower rates of fatigue and much higher rates of postexertional malaise in ME/CFS.
Higher rates of refreshing sleep than PEM were found. Muscle pain was easily the most common pain symptom found with joint pain next, then headaches and bloating. The most common cognitive problem was difficulty paying attention, followed by problems remembering things.
The study suggests that alcohol intolerance may not be as universal as has been thought with about 40% of all patients reporting it.
The Homebound Disease? ME/CFS and Other Chronic Illnesses
Punch "homebound" into the PubMed search bar and you'll almost invariably find the words older or elderly next to it in the citations it brings up. Many people in the U.S. are home bound but most of them appear to be elderly. One study found that 68% of homebound patients were over 80 years old. (Compare that to Jason's finding that the average age of the homebound ME/CFS patients was 44 years old.) A recent national assessment found that almost 400,000 people over the age of 65 were completely homebound, and about 1.5 million were mostly home bound.
[fright]
It appears that diseases featuring large numbers of young homebound patients are few and far between. People with other diseases who become homebound probably do so temporarily or the percentage so small as to not warrant research.
ME/CFS appears to have an almost unique ability to knock people out of the work force and back into their homes. The value of studies like these is not to validate what the ME/CFS community already knows, but to communicate to those outside the community how serious it can be. Hopefully, the NIH is listening.
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