3 basic reasons why people with ME/CFS can’t be as “academically productive” (learn as much in an academic year) as they could be before the illness

[Tom Kindlon]

For what it is worth, a short blog post I wrote earlier which I thought I would share:

DISCUSSION: 3 basic reasons why people with ME/CFS can’t be as “academically productive” (learn as much in an academic year) as they could be before the illness

This was prompted both by my own personal experience studying full-time with ME/CFS for 4.5 years but also by over the years seeing many students with ME/CFS in 2nd level & 3rd level education taking on a full academic workload (for one reason or...

forums.phoenixrising.me

This was prompted both by my own personal experience studying full-time with ME/CFS for 4.5 years but also by, over the years, seeing many students with ME/CFS in 2nd level & 3rd level education taking on a full academic workload (for one reason or another) and it not working out for them.‬

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Here are three basic reasons why people with ME/CFS can't be as “academically productive” (learn as much in an academic year, with a similar level of sacrifice) as they were before the illness (or compared to others who had similar academic ability):

- they generally will have fewer hours in a week to learn*.

- initially when learning: they can zone out/have difficulty sustaining concentration and not take in as much in class or in a study period.

- memory problems: they can forget a larger percentage of what they learn than previously, so need to spend more time revising.

So I think authorities should support students to take lower quantities of study/fewer classes.

Also students with ME/CFS themselves should seriously consider lowering the academic workload they take on and parents should try to support them doing so.

Students with ME/CFS having too heavy an academic workload can mean they don’t have a good work-life balance. But worse than that is that academic demands can cause post-exertional malaise. For some people, academic demands have permanently worsened people’s ME/CFS i.e. their long-term health.

Some students at third level have tried to do a full academic workload but end up repeating the year which is usually messier and less satisfactory than having taken on a lower workload in a planned way. Some may underperform in final exams and some unfortunately end up dropping out when the risk of both (underperforming or dropping out) may be lower with a lower workload.


*Reasons for fewer hours available to study can include:

- rest periods taking away time

- increased sleep requirements at nighttime.

- taking longer to fall asleep

- needing to stop studying quite a bit before bedtime to give more time to wind down so can sleep (as otherwise may not get to sleep or may have disturbed sleep)

- not being able to cram close to exams (e.g. by cutting down on sleep for a short period). If anything, students with ME/CFS ideally need extra rest & sleep around exam time to help ensure they perform optimally during the exam but also don’t suffer too much post-exertional malaise. Me personally, I relapsed badly after one exam in university after being at a level many might call recovered. This ended up causing a decline over the subsequent 14 months until I was basically bedbound (I was undiagnosed until I became severe).

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There can be other complications but I thought I would keep the blog simple by focusing on the three headings. A related point is part-time work: many students in general take on part-time work but with the reduced academic productivity in people with ME/CFS, this would be extra challenging to do.

 

[Tom Kindlon]

I couldn’t find a better forum to post in. Maybe an education heading or section could be added somewhere?

 

[Hutan]

Very good points Tom.

About the part-time work, especially at the more senior levels this can be the expectation and essentially is part of the education programme. For example, running labs and tutorials, attending field trips and monitoring and marking exams. That's something that you don't necessarily think about when deciding whether to take on advanced education. However, if you are hoping to have a career in academia, getting experience in these jobs can be important.

The other thing related to work is that government assistance policies for studying can assume that students should be able to manage a part-time job. That can result in students who are unable to work due to disability either relying on grants or family, or having to give up.

There is often some assistance for students with disabilities. For example some patient charities can give financial support to students with the particular health condition, and even to healthy students who have a parent with the particular health condition. People with ME/CFS can have trouble getting approved for general disability scholarships, or may feel too embarrassed to even try. And I'm not aware of any scholarships specifically for people with ME/CFS to undertake tertiary study.

 

[Hutan]

I couldn’t find a better forum to post in. Maybe an education heading or section could be added somewhere?

We have the Living with ME/CFS section, with subforums for work and finances, and home adaptations, among others, but no subforum there for children, young people or education.

I think a discussion subforum covering both 'Young People; Education' would be a good addition. I'll raise it with the staff.

 

[jnmaciuch]

Thanks for the post @Tom Kindlon, it very much speaks to my experience. I’m very thankful that my illness is mild enough to allow me to do grad school. But it’s the most frustrating thing in the world to have less than half the productive mental time as my classmates but only be able to reduce my workload by 25% (or else I lose my health insurance, being in the US).

I’ve had to be able to learn things at 3x the speed of everyone else just to keep up, and everything still blows up in my face if two professors happen to schedule big deadlines in the same week.

It becomes clear as day that there’s still a world of difference between “mild ME/CFS” and “healthy.” And I get a lot more flexibility as an adult—I can’t even imagine how hard it is to advocate for yourself in school as a child or teenager with ME/CFS.

 

[Alinda]

Those are some very good points for sure! Personally the physical effects was much bigger compared to cogntive (although I was in high school, so its a bit different). I think if I had been able to use an electric wheelchair 2 years ago I would not have had to stop.
Back then I hadn't even accepted to be "ill", though, so there is no way I would have used one.

 

[Midnattsol]

I've both had to stop my education/drop out of school and finished university-level education ahead of time. In one of my degrees courses where laid out one after the other, so you would have course A, exam course A, then start course B and do exam B, then course C etc. In another all courses would go simultaneously and there would be an extended exam period.

These two approaches make for very different possibilities to take a smaller workload - when courses are laid out one after the other you have a full week the period the course is, regardless of not taking other courses. Having long stretches of "nothing" might not make up for that. If I hadn't been in a good place health wise I could not have taken 100% 8-week courses and be helped by a few weeks break after. I would already have crashed. In the other approach there might be three/four courses during a week and not taking some of them would mean less work that week.

Another problem is courses that build on one another, or, they might not even do that but the university "require" you to have taken a previous course to be allowed another one. In one of my degrees all subjects in one term had to be completed before you were allowed to take next-term courses, and this was the case for all courses not just those building on one another. So if you took fewer classes in an autumn semester, you would not be allowed to take any courses the following spring and would have to wait until next autumn again to finish those courses and then do the same for spring.

The social aspect of taking fewer courses is also that you don't "belong" in any class and this can cause other organizational issues with how things are set up.

Education has not been thought through for anything besides 100% attendance, and it's ridiculous. Even more so in countries like mine where there is a lot of talk about "continued learning" while at the same time it's nigh on impossible to take any university course without becoming a full-time student first (there are some options but they are very limited).

 

[Hoopoe]

Society makes no effort to design systems that are compatible with energy-limiting conditions.

The medical system has positioned itself as gatekeeper determining who is disabled and this is also part of the problem. It can take years to receive a diagnosis and recognition of disability.

Educational systems should offer the possibility of taking courses/classes at reduced speed chosen by the student, with no justification or certification of disability required, while still trying to offer the same support as students taking a normal course.

 

[Tom Kindlon]

I’ve heard people with ME/CFS, and advocates for students with ME/CFS, concentrate a lot on getting extensions for assignments. While they can have a value, they don’t decrease the quantity of work at all. They just delay the work which may clash with subsequent work or mean someone has less time to study and revise close to exams.‬

 

[Tom Kindlon]

The social aspect of taking fewer courses is also that you don't "belong" in any class and this can cause other organizational issues with how things are set up.

I recall suggesting to one person they consider doing a reduced workload when starting third level education. They said they wanted to have the same friend group throughout college. I can understand that desire. Anyway she dropped out in the first term.

 

[Tom Kindlon]

Thanks for the post @Tom Kindlon, it very much speaks to my experience. I’m very thankful that my illness is mild enough to allow me to do grad school. But it’s the most frustrating thing in the world to have less than half the productive mental time as my classmates but only be able to reduce my workload by 25% (or else I lose my health insurance, being in the US).

I’ve had to be able to learn things at 3x the speed of everyone else just to keep up, and everything still blows up in my face if two professors happen to schedule big deadlines in the same week.

It becomes clear as day that there’s still a world of difference between “mild ME/CFS” and “healthy.” And I get a lot more flexibility as an adult—I can’t even imagine how hard it is to advocate for yourself in school as a child or teenager with ME/CFS.

A lot of the people I have in mind are people on the milder side of things who probably don’t have any mobility aids and can pass as healthy/non-disabled. “Everyone” (the system, parents, often the student themselves) don’t consider that a full workload might not suit them, as their disability is fairly mild. But the impairments get magnified/become clearer in education.

 

[MeSci]

I gained my Open University degrees while suffering from ME, apart from the first year when I attempted suicide and then had to take a year off.

I don't know how I managed it now! (I am 72, and finished my Masters degree in 2003.

I took most of my exams at home with an invigilator. That was after almost having an accident in busy Plymouth when I failed to see traffic lights!

I had to give up my car soon after, due to not having the money to continue driving. I had hoped to recover...

 

[Tom Kindlon]

A corollary of this is that just because somebody gets poor or just less than stellar results doesn't mean they weren't making a lot of sacrifices. A student with ME/CFS may have made more sacrifices than the norm but because of the inherent difficulties in achieving academic productivity as I listed above, the results could be lower than some other people.

 

[Tom Kindlon]

I recall suggesting to one person they consider doing a reduced workload when starting third level education. They said they wanted to have the same friend group throughout college. I can understand that desire. Anyway she dropped out in the first term.

Another reason I have heard given for not doing things more slowly is people want to move on to college at the same time as their peers or finish college and move on with/to the adult part of their lives. Again understandable. There can be lots of forces pushing people to take on full time academic loads. The problem is it often doesn’t work out.

 

[Midnattsol]

I recall suggesting to one person they consider doing a reduced workload when starting third level education. They said they wanted to have the same friend group throughout college. I can understand that desire. Anyway she dropped out in the first term.

I don't know how it is in other places, but I experienced pressure from councillors to show up for social activities and contributing to the psychosocial environment through attendance. Apparently such things reduce drop-outs. I never got through when explaining that I did not have the opportunity to do so (but was able to study from home).

And it's an illusion to believe just being in class builds strong relationship when there are lots of extracurricular acitivities one can't attend. I couldn't waste my energy to build and try to maintain relationships I would lose in a short while if my health deteriorated was simply not worth it. Then it was better to try to have a social activity outside of university so to not be in a group where "everyone else" meets up much more often than you.

Another reason I have heard given for not doing things more slowly is people want to move on to college at the same time as their peers or finish college and move on with/to the adult part of their lives. Again understandable. There can be lots of forces pushing people to take on full time academic loads. The problem is it often doesn’t work out.

I have been in a few discussions around school attendance regarding this "moving at the same pace as peers" idea. I'm not a very social person to begin with, so I guess things are different for me, but I have preferred to use my energy to get done with school and not try to maintain relationships with people that would anyway disappear from my life. Others seem to place much more focus on "being social". I am so grateful for not being forced to attend school "to be social" when I would rather just be at home and do thins at my own pace...