Percentage of people with ME/CFS able to work or attend school

Hutan

Hutan

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Staff member
Recently the percentage of people able to work came up in a forum thread.

A statistic of 75% of people with ME/CFS not being able to work was mentioned. This may have come from the CDC's February 2016 Public Health Grand Rounds bank of slides. Slide 22, part of Elizabeth Unger's presentation, mentions a Multi-site Clinical Assessment project with 471 patients from 7 US ME/CFS clinics that were receiving CDC funding. 75% of these patients were not working.

Obviously, this is a fairly small sample, and the patients who make it to the specialist ME/CFS clinics are probably not completely representative of all people diagnosed wth ME/CFS (and, much less, representative of all people with ME/CFS, diagnosed and undiagnosed).

This is a fairly weak basis for a claim that 75% of people with ME/CFS are not able to work.


It's an important question. If more people diagnosed with ME/CFS are not working than are working, it says a lot about the disease and its impact. It creates a frame of expectation that might be helpful when people apply for financial support or make insurance claims.

Do we have any better sources of evidence about the numbers of people of working age who are able to continue to go to work?

I can imagine there will be a lot of confounding in the selection of samples. The impact on people who can do well-paid work part-time from their bed will be different to the impact on people who have done physical work such as cleaning and building. There are also issues for good statistics created by people transitioning out of work early in their illness, perhaps not working but still employed; the counting of part-time work; and assumed retirement age. Where people, often women, were not in paid work at the time of disease onset e.g. taking care of children, they may not show up in 'change in employment' statistics.
 
Hutan said:
I can imagine there will be a lot of confounding in the selection of samples. The impact on people who can do well-paid work part-time from their bed will be different to the impact on people who have done physical work such as cleaning and building. There are also issues for good statistics created by people transitioning out of work early in their illness, perhaps not working but still employed; the counting of part-time work; and assumed retirement age. Where people, often women, were not in paid work at the time of disease onset e.g. taking care of children, they may not show up in 'change in employment' statistics.
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These are such important questions, and we can't work out the economic and social impact of ME until we answer sone of them.

I'm sure there must be ways to capture meaningful data by asking the right ones. It can't be too difficult to capture nuances such as changes in the nature of work done, the location, the number of hours, the earnings bracket relative to that before onset; the inclusion of caring and volunteering as forms of work; the addition of equivalent categories for studying at various stages of life; and questions about expected vs actual retirement age.

Andy said:
I have asked that the DecodeME team consider, if they aren't already, asking about work and schooling status
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Yes, it could be a really great opportunity.
 
Andy said:
It won't give an immediate answer but I have asked that the DecodeME team consider, if they aren't already, asking about work and schooling status in the secondary optional questionnaires that are being planned.
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I think that's a great idea, it's a marvelous opportunity to gather data. I'm one of the 'lucky' ones able to work but these days it's only because my employer lets me work from home, part time to spread the hours through the day. Previously I'd been well enough to still go into the office, and even got back to travelling. I suppose any questionnaire would have to be based on peoples situation 'now'.
I know it gets complicated quite quickly when wording questionnaires, but if you could gather data to tease out whether people work/study full time, or part time, whether it's from home or at a place of work, would be really interesting.
 
The 2021 NICE guideline describes 4 levels of ME/CFS with only the mild group being described as able to work or go to school: (my bolding)

Mild ME/CFS People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.

Moderate ME/CFS People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

So if we could find out what proportion are estimated to be mild, we'd have an idea what proportion are able to work.

I vaguely remember stats of a quarter each for mild and for severe/very severe, which would mean half moderate. If that's correct, that would support the idea of a quarter able to work.
 
Trish said:
The 2021 NICE guideline describes 4 levels of ME/CFS with only the mild group being described as able to work or go to school: (my bolding)

Mild ME/CFS People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.

Moderate ME/CFS People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

So if we could find out what proportion are estimated to be mild, we'd have an idea what proportion are able to work.

I vaguely remember stats of a quarter each for mild and for severe/very severe, which would mean half moderate. If that's correct, that would support the idea of a quarter able to work.
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I think it's something you've posted on before and have commented on the difficulties of classifying people's severity.
My issue with the above is that by all the metrics other than working I'm moderate. I can only work as I'm at home and can spread the hours out.
I don't say this because I particularly want to be "moderate", but to highlight the problem with one fixed description in a block of text. I suppose the get out is the use of "usually".

The questionnaire could be a real opportunity to gather info on the impact on people's lives, and perhaps even to form a view of what each degree of severity is more likely to mean.
I gave a little support to one of the charities in processing the results from a questionnaire they did, and we found that when you start going through the results you can find yourself wishing you'd asked other discriminating questions. It's something that needs quite a bit of thought up front.

Maybe also an opportunity to get rid of the term mild as well! When I was most definitely 'mild' it still dominated my life and constrained what I could do everyday. Perhaps something less descriptive, such as Stage 1, Stage 2 etc. wouldn't feel so dismissive of what it actually means. But then perhaps that wouldn't adequately convey the seriousness of being severe.
 
There's this from an Australian economic impact study. The study had all sorts of problems, it's probably impossible to answer the question of the impact of a disease without making all sorts of poorly based assumptions. There were only 85 people filling out the survey, and they came from NCNED's database, primarily of people interested in participating in their studies. Therefore, the people were probably predominantly from well-off backgrounds, and you can see the education levels are pretty high, and probably mostly in the mild to mild-moderate categories.

The percentage of unemployed of 65%, with only 5% employed full time is in the ballpark of the 75% unemployed statistic. The average income is pretty awful, especially as the average age suggests that people should have been close to peak income age.

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Aside from the other issues already raised, problems arise from the lack of precision in the statement that "75% are not in school or work" - the formulation needs to be of the order:


"X% of school or working age people with ME/CFS are in either education or employment"

or the reverse:

"X% of school or working age people with ME/CFS are neither in education nor employment"

or if identifying sub cohorts:

"X% of school or working age people with ME/CFS are in either full or part time education or employment"

or

"X% of school or working age people with ME/CFS are neither in part time nor full time education or employment"

A statement about the total number of PwME, which necessarily includes those beyond usual working age, and which references work and education, is inevitably confusing. It also serves to maintain the false picture of ME/CFS being an illness solely of younger age groups.
 
The latest Virology blog:

“Trial By Error: Research From GET/CBT Ideological Brigades Shows No Improvements
in Work Status” see https://www.virology.ws/2022/09/30/...cFRaFRhyrMqR0-pJmToPmXst9jJIv34WzPlj5myMAi6Cs

reports on a pre print article by @dave30th and Mark Vink “Commentary:
Graded Exercise Therapy and Cognitive Behaviour Therapy Do Not Improve Employment Outcomes in ME/CFS” containing the part of the text dealing with PACE and for the full text see https://osf.io/kjm3f/

which tangentially refers to levels of unemployment.

This post has been copied and responses moved to a new thread:
Commentary: Graded Exercise Therapy and Cognitive Behaviour Therapy Do Not Improve Employment Outcomes in ME/CFS, 2022, Tuller and Vink
 
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