Jason et al: Housebound versus nonhousebound patients with ME/CFS

[Dolphin]

The 25% (comment, analysis and ramblings)​

There's a group in the UK specifically for the severely-affected (I used to be a member, when I was, and it was a huge help). It's called the 25% Group, the name taken for the proportion of patients either bedbound or housebound. I'd never been able to find peer-reviewed evidence for the 25% figure*, though it seems to be widely accepted and I have no good reason to challenge it. Peer-reviewed, published support for the figure would give it more weight eg in advocacy work - and 25% is a shocking figure.

[* this paper cites a 1990 book co-authored by Dr David Bell, and a 2001 Action for ME membership survey, that I can't access]

 

[Dolphin]

This is the concluding sentence. I think they are trying to make the point after the comma i.e. that patients who are housebound need support; the introduction to the sentence is a bit odd though:

In order to better understand how to aide this severely ill population, programs need to be developed that provide services and resources to the homes of those that are not able to travel to obtain medical services or basic needs such as food and needed household supplies.

 

[JaimeS]

There are a few of the 25% figures, or close. Jason's huge study on the matter ended with 22.-something-% as I recall -- pretty close to the oft-estimated 25%.

 

[Forbin]

Talking of statistics; ever since I was diagnosed (15 years ago) the figure of '250,000' ME sufferers in the UK has remained the same.
I don't know if this is the case for other countries(?), but it implies that people are recovering as fast as others become ill or are diagnosed. So where are all these people who have recovered?

If the number of cases were static, it would not just be recovery that balances against new cases. I suspect it would mostly be death (by any cause).

But it's almost certain that the number of cases does not remain constant.

Unfortunately, when an estimate of case numbers is made, people tend to keep using that original prevalence-based number even as the population increases.

In 1999, Jason estimated the US adult (over 18) cases to be 836,011. This figure is often used as the low end of the range and is sometimes reported as 850,000.

But the figure is based on a population estimate from 1997 - the most recent year Jason had available. Basically, it's 198.1 million US adults multiplied by a prevalence rate of 0.422%

However, by 2015, the US adult population had grown to 247,773,700. Using Jason's prevalence rate would result in 1,045,605 current cases, or an increase of about 210,000 US cases ( ↑ 25% ) since 1997.

All this assumes, of course, that the prevalence rate has remained constant over time.

 

[Simon]

a 2001 Action for ME membership survey, that I can't access..

Thanks, @Dolphin!

Relevant findings from Action for ME membership survey, published in 2001:

Surveys were distributed to AfME’s 7,529 members in August 2000 of whom
2,338 responded (31%), making it the biggest survey ever done of M.E. in the UK.

[80% of those who are currently bedridden by M.E. report that a request for
a home visit by a doctor has been refused]

Participants were asked about their level of severity:

1. 2,076 (89%) of the respondents (28% of those mailed) replied that they are
or have been severely affected (i.e. either bed-ridden or house-bound).

[5]. 1,211 (58%) experienced this level of disability for over a year and 495 (24%)
were at this level for over four years.

2. Of the 2,338 respondents, 710 (30.4%) are currently severely affected.

3. 110 (4.7%) are very severely affected i.e. “bedridden – totally reliant on
others for care”.

4. 957 (41%) reported having been bedridden now or in the past.
...
8. 35% of respondents use a wheelchair.

Comment
This looks like more than 25% to me.

So that's an extraordinary 89% who ever have been severely affected (58% of these for over a year, 24% for over four years) and 30% currently severely affected (housebound or bedbound). And 35% using a wheelchair, consistent with 30% currently housebound/severely-affected.

OK, it's a self-selected sample, and you'd expect a patient charity membership to over-represent more severe cases and under-represent milder cases. Though some severe cases might well have chosen to join the 25% group in the UK instead (I think it's name came from the 1990 Bell book info) or actually not be enganged with any charity.

The figures are higher than for Jason, but I'd expect that sample, of people who'd attended clinics or volunteered for research to under-represent the severely-affected who wouldn't be able to attend clinics or have energy to think about being in a research sample, even a postal one.

Interestingly, the Nacul primary care sample (GPs) hints at more than 25% bedbound/housebound, but they didn't ask that question and the way the data was presented doesn't allow a more accurate estimate:

While this doesn't measure housebound status, it gives SF36 survey scores, which gives clues.
25% of patients scored 10 or less on the Physical Function subdomain. You get ten points for being able to wash and dress, but not, eg climb a flight of steps or walk a block - even with difficulty. So you would expect all of them to be housebound, especially as some will score less than ten (struggle/can't do personal care). In fact, it may well be more 25%, but you can't tell from the data provided (interquartile range).

The poor level of functioning is supported by (at least) 25% scoring 0 for 'Role Physical', which means physical health problems interfere with everything you do, and 25% (or more) scoring 12.5 (or lower) for Social Functioning, which equates to your health interfering quite a bit/extremely with social activity with friends and family.

So 25% looks good as a minimum figure. Which makes their neglect even more scandalous.

 

[Simon]

There are a few of the 25% figures, or close. Jason's huge study on the matter ended with 22.-something-% as I recall -- pretty close to the oft-estimated 25%.

Do you have the details? It sort of rang a bell with me, but I scanned the paper (and searched for severe/housebound) and couldnt' find anything.

 

[JaimeS]

I do. I'm working on the Exercise Page on #MEpedia for the next wee bit, but I promise I'll come back with data. When I was doing fact-checking for something of Jen's, I gathered this enormous amount of data. That's where it all is at this point, I need to hunt around a bit.

-J

 

[JaimeS]

Jen is away for the week, so I won't hear anything back about the document until Monday at the earliest. I am, however, making my way through the IOM report and they state that the figure is around 25%, but note the phrasing:

At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.

Emphasis mine.

Here are what they cite after that sentence:

Marshall et al, 2011. The search for pain relief in people with chronic fatigue syndrome: a descriptive study.

NIH, 2011. State of the knowledge workshop. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research: Workshop report.

Shepherd and Chaudhuri, 2001. ME/CFS/PVFS: An exploration of the key clinical issues.

Interestingly, none of these are the sources I was thinking about.

At another point, they repeat the 25% figure:

Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms.... However, these data include only patients who were counted in clinics or research studies and may underrepresent the extent of the problem by excluding those who are undiagnosed or unable to access health care.

The citations here were, at first from the NIH report cited previously (25 - 29%) presumably from an assimilation of data from multiple reputable studies. The second (that this may be an underestimate) is from:

Wilborg et al, 2010. Being homebound with chronic fatigue syndrome: A multidimensional comparison with outpatients.

______________________________________________

To follow, my musings on the matter....

 

[JaimeS]

Now, here comes my personal musings on the matter, completely divorced from any of the above, and thus, a separate comment.

We have two basic problems.

1.

The first is that there is a subset of patients who have 'very mild' ME who continue going about their lives. They find it incredibly difficult to keep up with their responsibilities, but they keep going. Perhaps others' dismissal of fatiguing symptoms has convinced them that everybody experiences the symptoms they experience, they just struggle a little more. Maybe they visit the doctor once, and get told to try yoga, get more sleep, and eat more vegetables. (We all know that sleep and vegetables are the mainstay recommendations in mainstream medicine when they don't know what to say!) Maybe they're given anti-depressants and sent home. They don't improve, but they know they're not supposed to say so, or they'll be given stronger anti-depressants.

So. This person certainly never visits a specialist ME or CFS center. They don't even have a diagnosis. The 'very minor' population is an underrepresented population in studies.

2.

Then we have a second group of patients who may be very ill, but for whatever reason have limited access to medical care. They may now be unable to leave the house. Maybe they don't have insurance. Maybe they belong to a population who the average white male doctor believes is prone to exaggeration. This is an underrepresented group of patients that is likely sicker than the median patient with ME.

________________________

It's naive to say that these two populations de facto 'even out' in the end. I have no idea how many patients belong to the first category, and how many belong to the second.

So the 25% figure is found repeatedly, is found on review of multiple sources, but it by necessity / by the shape of reality leaves out the vast number of patients. A few related factoids:

• It has been estimated that about 80% of PWME are undiagnosed.
• Despite the fact that 90-something percent of diagnosed patients are white, a disproportionate number of undiagnosed patients may be POCs (As Jason has shown multiple times: 1999, 2009, 2011; IOM also cites Reyes who did a small study in Witchita, Kansas in 2003)

I will say that some researchers seem to believe that undiagnosed patients lean towards the 'very minor' category. A multi-centre study by Jason (again -- when I think of his contributions to epidemiology of ME!) showed 13.5% of patients could work, even part-time. The study went on to say that this was probably not a good representation of PWME because PWME with more minor symptoms probably weren't at a CFS or ME center!

FWIW,

J

 

[A.B.]

My brother probably also has CFS, is undiagnosed.

My mother had definite and severe CFS at some point (was mild to moderate for years, got much worse after a flu), then gradually better and is now about 85% healthy. She never received a accurate diagnosis, and was only ever offered antidepressants even though she has never been depressed and is actually stubbornly optimistic about everything.

It's easy to go undiagnosed when doctors don't know how to recognize CFS, patients are treated poorly, and there's no treatment and therefore no real reason to seek out a diagnosis.

 

[Dolphin]

Then we have a second group of patients who may be very ill, but for whatever reason have limited access to medical care. They may now be unable to leave the house. Maybe they don't have insurance. Maybe they belong to a population who the average white male doctor believes is prone to exaggeration. This is an underrepresented group of patients that is likely sicker than the median patient with ME.

FWIW:

72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes. Three other key factors that were significantly, positively associated with GPs' attitudes were knowing someone socially with CFS/ME, being male and seeing more patients with the condition in the last year.

Fam Pract. 2005 Aug;22(4):389-93. Epub 2005 Apr 1.
Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge.
Bowen J1, Pheby D, Charlett A, McNulty C.

 

[JaimeS]

At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.

Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms....

There's actually a problem with this phrasing. If we presume the first quote and the second are related, it's more accurate to say that, at any given time, 25 - 29% of patients are housebound or bedbound. It actually doesn't follow that it's also true that 25% will be at some point. We know that for many, this illness is relapsing-remitting. Until I came into advocacy, I didn't realize just how extreme that could be for some, just because that isn't my own, personal experience of the illness. After listening to others' stories, there are definitely many who swing from very minor to severe and back. The previous two facts might be seen as equivalent in a progressive illness, but doesn't seem sensible for a relapsing-remitting one.

-J

 

[JaimeS]

FWIW:

Re: the 'being male' thing. Very interesting! I know I linked when I said that, but I linked to a very large document. Here is an exerpt:

In another study based on actual clinical encounters, van Ryn and Burke (2000) surveyed 193 physicians to assess their perceptions of 842 patients (57% white and 43% African American) following post-angiogram hospital visits. The authors asked physicians to rate their patients on a variety of personal characteristics such as intelligence, self-control, education level, pleasantness, rationality, independence, and responsibility. In addition, the authors asked physicians to rate their feelings of affiliation toward the patient and their perceptions of their patients' degree of social support, tendencies to exaggerate discomfort, likelihood of complying with medical advice, likelihood of drug or alcohol abuse, as well as other characteristics.

van Ryn and Burke also surveyed patients and assessed their frailty/sickness, depressive symptoms, social assertiveness, feelings of self-efficacy, and perceived social support. These variables, along with information about physicians' age, sex, race, and medical specialty were entered into logistic regression analyses to control for the impact of these variables on physicians' assessments of patients.

The results supported the authors' hypotheses that patient race and socioeconomic background do influence physicians' perceptions, even when controlling for differences in patients' socioeconomic status, personality attributes and degree of illness. African-American patients were rated as less intelligent, less educated, more likely to abuse drugs and alcohol, more likely to fail to comply with medical advice, more likely to lack social support, and less likely to participate in cardiac rehabilitation than white patients. Furthermore, African-American patients were two-thirds as likely as whites to be perceived as the kind of person the physician could see him/herself being friends with. Finally, a significant interaction of race and socioeconomic status was found, in that at low socioeconomic (SES) levels, black patients were rated as less pleasant and less rational than whites.

These studies lend support to the hypothesis that physicians' diagnostic and treatment decisions are influenced by patient race. In addition, they suggest that these influences are complex, and that both patient and provider gender may significantly influence physicians' perceptions. They do not, however, elucidate the mechanisms by which these attitudes, biases, and stereotypes may result in differences in clinical treatment, or the degree to which these attitudes might affect the outcome of patient care. It therefore remains unclear what degree of racial and ethnic disparities may be explained by this mechanism.

I broke these up a bit because the huge blocks of text were a bit much, but otherwise added / removed nothing.

Unfortunately, it only says that gender was a factor!

-J

 

[Dolphin]

Re: the 'being male' thing. Very interesting! I know I linked when I said that, but I linked to a very large document. Here is an exerpt:



I broke these up a bit because the huge blocks of text were a bit much, but otherwise added / removed nothing.

Unfortunately, it only says that gender was a factor!

-J

I can't see it seeing anywhere male physicians were worse than female physicians. I've had a quick skim of the full text also.

 

[JaimeS]

Agreed, @Dolphin -- me, either.

 

[JaimeS]

This appears to be the SAME paper that Dolphin was citing, above.