The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique in How Many People are Homebound?

[Cort]

[fright]

[/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.

[fleft]

[/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.

[fright]

[/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.

 

[Hello!]

I wonder how they defined housebound? Was it never able to leave the house? Once a month, followed by a crash?

Only 30% are even employed at all! Now there's an important point to make when discussing the severity of the illness.

 

[Mary Hamilton]

Medicare defines housebound as still being able to go out for medical appointments and maybe church.

I was out today for blood work and vaccine for diagnosing immune stuff. I look fine. No one knew how I was ready to fall over from sitting in the most uncomfortable chairs ever made in the history of the world, and dealing with how they totally screwed up the appointment. Or even making me stand while they checked me in.

I'm a puddle now. They'll never see it. No one will see it.

I have to cancel and reschedule doctor appointments so often. Most times it is 4-5 weeks before I get out my front or back door. I tell my doctor this and for years he tells me I need to go to the pool and work out. Doesn't he think if I could, I would?

 

[BusyTVI]

If I could work full time, I would. I am crawling to work and hoping I'm able to get home safely. In between, the fog rolls in and out while I try to do a good job. I will have to take an early retirement sooner than I want, but hope to have financial pieces in place so I have roof over head. Doctor believes me when I say that exercise quite often backfires unless I'm very careful. He stated that current practice is to have doctors push the exercise, but he could see that I was in bad shape the day after I had tried a short walk. He believes that some of us are doing further damage by having to push ourselves too much, but understands sometimes the financial choice is tight, and sometimes the push comes from within the family/extended family. I am very lucky to have the choices I have as for part time, flexible calendar with understanding staff and managers. Without these supports, I too would be homebound. I am, outside of work. I never go anywhere else unless to doctor appointment, or finally scrounge easy to prepare food.

 

[bobby]

I think the main reason why so many of us are homebound is because we get no treatment at all! What if people who have other illnesses (let's say MS) got no treatment, no help, nothing? A lot more of them would be homebound too.

Of course it shows how serious our illness is, but it also shows how totally ignored we are. It's extremely upsetting to think about.

 

[Simon]

Interesting post, Cort, thanks

This high housebound rate compared with other illnesses fits too, given that mecfs has higher levels of functional impairment, on average, than most other chronic conditions inc MS and arthritis. It's even more striking given that the peak years for getting mecfs are teen years and late thirties, younger than for most chronic conditions, making the housebound status even more alarming.

And in those other conditions, if you are too ill to make it to an outpatient clinic, they will do the obvious and bring you in as an inpatient. The default for severe mecfs cases is abandonment.

Btw, more geeky analysis of that housebound study here

 

[Mary Hamilton]

I have to cancel and reschedule doctor appointments so often. Most times it is 4-5 weeks before I get out my front or back door. I tell my doctor this and for years he tells me I need to go to the pool and work out. Doesn't he think if I could, I would?

Hello Bobby!

 

[Cort]

If I could work full time, I would. I am crawling to work and hoping I'm able to get home safely. In between, the fog rolls in and out while I try to do a good job. I will have to take an early retirement sooner than I want, but hope to have financial pieces in place so I have roof over head. Doctor believes me when I say that exercise quite often backfires unless I'm very careful. He stated that current practice is to have doctors push the exercise, but he could see that I was in bad shape the day after I had tried a short walk. He believes that some of us are doing further damage by having to push ourselves too much, but understands sometimes the financial choice is tight, and sometimes the push comes from within the family/extended family. I am very lucky to have the choices I have as for part time, flexible calendar with understanding staff and managers. Without these supports, I too would be homebound. I am, outside of work. I never go anywhere else unless to doctor appointment, or finally scrounge easy to prepare food.

Good luck on your quest to get your financial pieces together.

 

[Cort]

I think the main reason why so many of us are homebound is because we get no treatment at all! What if people who have other illnesses (let's say MS) got no treatment, no help, nothing? A lot more of them would be homebound too.

Of course it shows how serious our illness is, but it also shows how totally ignored we are. It's extremely upsetting to think about.

Yes, indeed. That makes me think of Donna Jackson Nakazawa - a journalist with a severe autoimmune disorder. Without the drugs she's taking she's in bed; with them she's functional.

Hopefully the times are changing and we are finally getting some attention. We should know pretty soon I think about the strategic plan the Working Group is creating.

 

[Cort]

Interesting post, Cort, thanks

This high housebound rate compared with other illnesses fits too, given that mecfs has higher levels of functional impairment, on average, than most other chronic conditions inc MS and arthritis. It's even more striking given that the peak years for getting mecfs are teen years and late thirties, younger than for most chronic conditions, making the housebound status even more alarming.

And in those other conditions, if you are too ill to make it to an outpatient clinic, they will do the obvious and bring you in as an inpatient. The default for severe mecfs cases is abandonment.

Btw, more geeky analysis of that housebound study here

Who does geeky analyses of studies better than you Simon? No one I say!

The results from the sample sets were quite different; they were quite different groups in several ways.

 

[bobby]

Without the drugs she's taking she's in bed; with them she's functional.

exactly! and imagine an MS patient being denied mobility devices (a walking stick, a wheel chair, a leg brace) because it would 'become a negative crutch', like the reaction we get all the time. How mobile would they be?

With some severe auto immune illnesses patients would literally die without medication. I know it's a pretty sinister point to make, but part of why we are ignored is that most of us don't die. And if we do, it's still denied as being an ME related death. That this abuse is still going on now, in this supposedly 'modern age of science', blows my mind...

 

[Mary Hamilton]

If I could work full time, I would. I am crawling to work and hoping I'm able to get home safely. In between, the fog rolls in and out while I try to do a good job. I will have to take an early retirement sooner than I want, but hope to have financial pieces in place so I have roof over head. Doctor believes me when I say that exercise quite often backfires unless I'm very careful. He stated that current practice is to have doctors push the exercise, but he could see that I was in bad shape the day after I had tried a short walk. He believes that some of us are doing further damage by having to push ourselves too much, but understands sometimes the financial choice is tight, and sometimes the push comes from within the family/extended family. I am very lucky to have the choices I have as for part time, flexible calendar with understanding staff and managers. Without these supports, I too would be homebound. I am, outside of work. I never go anywhere else unless to doctor appointment, or finally scrounge easy to prepare food.

Hello!

 

[eilidh]

The relatively low percentage of non-housebound patients reporting that they experience post-exertional malaise (66%)

This is an interesting percentage of 66% of ME patients that say they don't experience post-exertional malaise as it fits very well with the 40% of misdiagnosed ME patients found by Julia Newton. Her paper on this subject can be found at www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/

 

[Tony L]

I think we have to be careful in trying to interpret such figures. We know that most GPs in UK receive no training on ME/cfs and that in the absence of a medical model to direct their practise in this area they are free to make up their own minds. So misdiagnosis is likely to be high. On the other hand I'm not sure I would trust figures for re-diagnosis either. What about those sufferers out there who get nothing in terms of diagnosis?

We just do not know enough about the variability of disease progression. There may well be a significant number with relatively mild disease not experiencing significant PEM. However they may be primed ready for some life event to trigger more serious disease progression. That was certainly my own experience. Although I'd had a lifetime full of viral challenges, it was recent traumas from my family life that seem to have triggered a more severe ME presentation, as opposed to the mild (although gradually increasing with time) ME/cfs, sometimes FM symptoms earlier in my case history.

As for the housebound discussion. I think we shouldn't underestimate the role that cognitive dysfunction can play in this for some of us. The more cognitively impaired we become, the less able we are to interact with the world outside (often misdiagnosed as depression). I didn't really feel vulnerable until this happened to me. The problem then is that we become more prone to negative experiences which can exacerbate the perfectly rational feelings of vulnerability.

 

[EYAKLLE]

1/4 of those with true Ramsey CCC ME are horrifically disabled.
60 000 in the uk out of the 250 000
250 000 in the usa out of the 1 000 000
Pretty horrific

Unfortunately 1 000 000 are under the OXFORD CFC CFS umbrella in the UK
And 4 000 000 in the USA.
Research is therefore meaninglessly clumping it all together and finding everything wrong for every wrong patient !

 

[Liz]

Cort,
This is fascinating -- thank you! You mentioned that the questionnaire was given to patients in Chicago, the UK and Norway -- I live in Atlanta and I participated in the survey, along with others from our support group. As a homebound patient, I find the results particularly interesting. One part jumped out at me --

The study suggests that alcohol intolerance may not be as universal as has been thought with about 40% of all patients reporting it.

I clearly remember the alcohol questions in the survey because alcoholism runs in my family, and while I am not an alcoholic, it has been my experience that I was intolerant of alcohol after I became sick. There was really no direct question that allowed for a patient to elaborate on their experience. I left some of those questions blank because they asked about a patients current alcohol consumption. I have not had a drink in 24 years, but I stopped specifically because I was feeling too sick to tolerate it. No part of the questionnaire allowed for that kind of explanation -- it centered on how much you drink now and what is the effect. I found other questions to be highly relevant and I would give the researchers high marks in their design of the survey, but those questions about alcohol consumption were not as accurate as they could have been, and that might have skewed the results.

 

[Lissa]

Cort,
This is fascinating -- thank you! You mentioned that the questionnaire was given to patients in Chicago, the UK and Norway -- I live in Atlanta and I participated in the survey, along with others from our support group. As a homebound patient, I find the results particularly interesting. One part jumped out at me --

I clearly remember the alcohol questions in the survey because alcoholism runs in my family, and while I am not an alcoholic, it has been my experience that I was intolerant of alcohol after I became sick. There was really no direct question that allowed for a patient to elaborate on their experience. I left some of those questions blank because they asked about a patients current alcohol consumption. I have not had a drink in 24 years, but I stopped specifically because I was feeling too sick to tolerate it. No part of the questionnaire allowed for that kind of explanation -- it centered on how much you drink now and what is the effect. I found other questions to be highly relevant and I would give the researchers high marks in their design of the survey, but those questions about alcohol consumption were not as accurate as they could have been, and that might have skewed the results.

Yes! Not sure if it was a survey or a poll, but I thought the same thing. There was no option to say that you don't drink at all.... Never have, never could even stand the smell of alcohol.

 

[Cort]

Cort,
This is fascinating -- thank you! You mentioned that the questionnaire was given to patients in Chicago, the UK and Norway -- I live in Atlanta and I participated in the survey, along with others from our support group. As a homebound patient, I find the results particularly interesting. One part jumped out at me --

I clearly remember the alcohol questions in the survey because alcoholism runs in my family, and while I am not an alcoholic, it has been my experience that I was intolerant of alcohol after I became sick. There was really no direct question that allowed for a patient to elaborate on their experience. I left some of those questions blank because they asked about a patients current alcohol consumption. I have not had a drink in 24 years, but I stopped specifically because I was feeling too sick to tolerate it. No part of the questionnaire allowed for that kind of explanation -- it centered on how much you drink now and what is the effect. I found other questions to be highly relevant and I would give the researchers high marks in their design of the survey, but those questions about alcohol consumption were not as accurate as they could have been, and that might have skewed the results.

That's good to hear. Thanks for relaying that.