What paper found 25% of patients are housebound/bedbound?

[Milo]

I am looking for the paper that shows that 25% ofME patients are housebound or bed bound.
Thanks!

 

[Forbin]

The IOM report says:

"At least one-quarter of ME/CFS patients are bed- or house-bound at some point in their illness." (bolding mine)

That does not really equate to 1/4 of all patients being bed- or house-bound concurrently.

Likewise, Wikipedia's CFS page says:

25% of people with CFS are house-bound or bedridden for long periods during their illness, often for decades.

...which does more suggest that the figure might approach 25%.

Following the citation links on Wikipedia, I have not had much luck finding an explicit source for their 25% figure, but it might be in some chart I don't comprehend.

 

[Obermann]

A paper by Jason's group states: "Only 13% of patients are able to maintain full-time employment, and 25% or more are confined to their homes (housebound) or completely bedbound." The Jason paper in turn quotes two other papers, but I don't have either of them.

Jason paper:
Pendergrast T, Brown A, Sunnquist M, Jantke R, Newton JL, Strand EB, Jason LA. Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome. Chronic Illn. 2016;12(4):292–307.

The two other papers:
Yeomans JD, Conway SP. Biopsychosocial aspects of chronic fatigue syndrome (myalgic encephalomyelitis). J Infect. 1991; 23:263–269. [PubMed: 1753134]
Feiden, K. Hope and help for chronic fatigue syndrome: the official guide of the CFS/CFIDS network. Palmer, Alaska: Fireside Books; 1990.

 

[Andy]

Yeomans JD, Conway SP. Biopsychosocial aspects of chronic fatigue syndrome (myalgic encephalomyelitis). J Infect. 1991; 23:263–269. [PubMed: 1753134]

Paywall, https://www.sciencedirect.com/science/article/abs/pii/0163445391928642
Scihub, https://sci-hub.se/https://www.sciencedirect.com/science/article/abs/pii/0163445391928642

Feiden, K. Hope and help for chronic fatigue syndrome: the official guide of the CFS/CFIDS network. Palmer, Alaska: Fireside Books; 1990.

This is actually a book, Amazon product ASIN 0671759442, my Google skills unfortunately can't find any option that allows reading it without purchasing it.

 

[Joh]

The IOM report (page 16) lists these three studies:

At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001).

 

[Simon M]

The key paper, by Pendergrast, was discussed on PR in 2016 on this thread.

With wise analysis here

The 25% (comment, analysis and ramblings)

Short version: The study provides support for a 25% rate of housebound/bedbound patients, based on a sample of over 500 patients from three different countries. The sample is likely to miss both the least severe and most severe cases, which increases the uncertainty.

An earlier study based on surveys of UK GP practices, likely to be more representative didn't directly measure housebound status but supports a figure of at least 25%.

 

[JemPD]

Perhaps asking the 25% Group? ... they might have based their name on something more concrete?

 

[ukxmrv]

That figure was right through the UK CMO Report but I don't know where they got it from

"There is insufficient good-quality evidence available to guide precise estimates of
service need (see Annexes 1 and 2). However, on the basis of a reasonable estimate
of adult population prevalence of 0.4%, a general practice with a population of
10,000 patients is likely to have 30 – 40 patients with CFS/ME, about half of whom
may need input from services. The proportion of the latter patients who are
severely affected by the disease is thought to be up to 25%. This group, who may
be house-bound or bed-bound, have a considerable level of need yet they face
considerable barriers to accessing services."

Department of Health. A Report of the CFS/ME working Group: report to the chief Medical Officer of an Independent Working Group. London: Department of Health; 2002

 

[Cinders66]

The key paper, by Pendergrast, was discussed on PR in 2016 on this thread.

With wise analysis here

Thanks. I looked at the nacul study and was frustrated it didn’t specifically mention severity categories but your analysis of the data is very useful and I’m pleased to see the 25% figure is accurate within a 0,2% prevalence estimate using Fukuda or CCC. . Obviously where weaker criteria are used and the overall number in U.K. estimated to the 600 000 - 2m or whatever, then the severe will become a lesser percentage which is partly how I think that they Have been invisibilsed as the UK and similar countries moved away from treating ME as serious neurological to a fatigue plus disorder to be managed alongside other fatiguing but often less debilitating conditions eg with cancer effect, FM and arthritis fatigue.

Edited to reflect the nacul et al overall prevalence estimation

 

[Dolphin]

I remain to be convinced by the 25% figure. The Prendergast study used a convenience sample. My impression is mildly affected people tend to move on from ME/CFS activities or never get involved in the first place.

It does depend on the overall prevalence. But if one uses a prevalence figure like .4%, I'm not convinced that 0.1% of the Irish population anyway is severely affected from running a national group here for over 20 years. There does appear to me to be more severely affected people in the UK, perhaps because of all the CBT/GET/rehab services and promotion?

 

[Mithriel]

I am sure it was in his book but do not have it close at hand but Ramsay said something like 25% of people in the epidemics recovered, 25% steadily worsened, while the rest were variable round what we would now think of as PEM or crashes.

 

[Milo]

Thank you everyone, I appreciate all of your comments.

I agree with @Dolphin ‘s comments and would say that proper (and current) epidemiology studies would be important in determining the devastating personal, financial and societal consequences of ME. Convenience cohort is not ideal.

 

[DigitalDrifter]

Scihub, https://sci-hub.se/https://www.sciencedirect.com/science/article/abs/pii/0163445391928642

They conflate chronic fatigue with ME and use no control group.

 

[Sean]

They conflate chronic fatigue with ME and use no control group.

This is my surprised face:

 

[ME/CFS Skeptic]

Anyone knows where this figures comes from?

This 2002 report from the Chief Medical Officer in the UK states:

Estimates suggest that up to 25% of people with CFS/ME are so seriously affected that they are unable to perform most basic personal tasks and are confined to bed or spend the majority of the day in bed.
​

But without giving good references. So it must be at least 20 years old.
https://meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

 

[Simon M]

They’ve been quite a few studies since then and it does seem to be reasonably good for 25% equals housebound. Eg Pendergast

 

[trudeschei]

In Norway we have don several large patient surveys. A survey about course of illness in 5822 respondents from all of Norway.
We asked about the severity of illness, based on the ICC-criteria. Mild - at least 50% reduction in activity, moderate - mostly housebound, severe - mostly bedbound, very severe - bedbound and in need of care.
We found that 25% said they had mild ME, 57% that they had moderate ME, and the rest severe/very severe.
We repeated the survey in Europe last summer, and have not published the report yet, but the numbers ar largely similar in all of Europe.

I too, looked for the original article for the 25%, and could not find good references. It seemed it was based on a patient survey, but I could not find it. In any case, without knowing what is meant by "severe" it means nothing. I have seen places where it is said that 25% of patients are bedbound, other that 25% are house- or bedbound. There seems to be many different scales for severity, and what is meant by "severe" differs, some scales call housebound "severe", other scale stipulate that "severe" means bedbound.

The answers in our survey seem to indicate that ME is far more severe than is usually communicated.
English summary here:
https://www.me-foreningen.no/wp-con...-on-the-course-of-illness-English-summary.pdf

 

[ME/CFS Skeptic]

The answers in our survey seem to indicate that ME is far more severe than is usually communicated.

Thanks, I've already included the big Norwegian study. The results are indeed interesting.

Does the big European survey also includes responses on mild/moderate/severe ME/CFS? Any idea on when the results might be published?

Many thanks in advance,

 

[trudeschei]

Thanks, I've already included the big Norwegian study. The results are indeed interesting.

Does the big European survey also includes responses on mild/moderate/severe ME/CFS? Any idea on when the results might be published?

Many thanks in advance,

We are working on the data.
Professor Arild Anglesen is doing this in his spare time, and I have ME, and am doing this with my spare energy... The amounts of time and energy are not entirely predictable. I have had bad reactions to all three vaccine doses, but I am gradually getting better, and we are hoping to get soemthing out before summer, fingers crossed.
I don't know if you have seen this? presentation in Norwegian, but slides in English.

 

[ME/CFS Skeptic]

We are working on the data.
Professor Arild Anglesen is doing this in his spare time, and I have ME, and am doing this with my spare energy... The amounts of time and energy are not entirely predictable. I have had bad reactions to all three vaccine doses, but I am gradually getting better, and we are hoping to get soemthing out before summer, fingers crossed.

Thanks, good to get an update.

I think everyone will understand that it takes a while to analyse such a big dataset. You also already do a lot for ME patients.

Sorry to hear you responded badly to the vaccines. Hope you'll keep improving.

Best wishes.