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Careers (and job) advice for people with ME/CFS (maybe particularly young people) - a discussion

Discussion in 'Work, Finances and Disability Insurance' started by Tom Kindlon, Jul 13, 2022.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    One gap in ME/CFS educational material appears to be on the topic of careers advice for people with ME/CFS.

    I think there are likely some jobs and careers that are more suitable for people with ME/CFS while there are others that might be less suitable, either in theory or practice.

    Of course, perhaps there are discussions and documentation on this I’m not aware of?

    It of course might be hard to come up with any sort of complete list but general pointers could probably help. For example, a job which involves being on your feet for hours at a time could cause problems. A related issue is then whether modifications are feasible or not.
     
    Last edited: Jul 14, 2022
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  2. Midnattsol

    Midnattsol Moderator Staff Member

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    I'm testing out data science/informatics, and would like to see if I'm able to do online nutrition councelling at some point. Working from a computer with the ability to work from home is key to me at this timepoint.
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    You may find that COVID has aided this. Online consults still seem to be sought after. It also lets you widen your geographical practise area - so if you find you want to specialise in something in particular, it may be more viable now.
     
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    An expectation of long shifts could also be a problem. For example, from what I’ve picked up, the norm now for nurses in Irish public hospitals is a shift of 13 hours. I think this may even have been pushed for by nursing organisations as staff generally only have to work 3 days per week.

    I think there may be some scoop for accommodations if you are already well established but my impression was there might be less of this for nurses in training or who are newly qualified.

    Similarly recently qualified doctors often seem to be expected to work long hours and be on call. I remember doing “work experience” (we didn’t do any work of course, just shadowed doctors) with a consultant. I wasn’t diagnosed at stage and was mildly affected but I had a strong feeling I wouldn’t have been able to cope with the long hours.
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    One concern I have is that with some jobs/careers, even if someone was doing very well (at say 80%-100%), that some jobs are more risky than others in terms of causing relapses.

    It would be such a shame if someone was left with long-term health problems from choosing a less suitable career path.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    Some art/craftwork producing high value items might be suitable for some people e.g. furniture making; knife making; quilting; jewellery. The sort of thing that can be done in fairly short bursts, and stopped if symptoms start. Maybe writing?

    I think if you get ME/CFS after you are well-established in a career, being a director of a company related to your field, or on government committees can provide the intellectual stimulation and feeling that something is being achieved without an expectation of a high level of time. The work tends to come in bursts, with meeting preparation and then the meeting, and a lot can be done online. It's also quite modular - you can start with one board or committee and see how that goes. If it's ok, another one could be added. The terms of many of them are fixed, creating an opportunity to adjust workload. This is something I'm exploring now, as I need to get some income.

    I'm in a recruitment database for government committees that the (New Zealand) government office concerned with disability issues runs. The people there have been great about suggesting things I can apply for - some of which are related to what I have learned from having ME/CFS. I expect there are similar government databases in other countries. With the greater recognition of the value of diversity on government committees and boards, there are opportunities about, particularly for women, for people with disabilities and people from particular ethnic or social backgrounds. I wish I had been able to get onto it sooner - if you leave it too long, it's harder for people to value what you did before getting ME/CFS. I think there would be opportunities for young people with ME/CFS too, especially if they have a relevant qualification and a track record in advocacy.

    I'm interested to hear if people think being a university academic is compatible with mild/moderate ME/CFS and, if so, any ideas for managing things. My son is looking at the possibility of starting a PhD next year.
     
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  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    For what it is worth, I had a mini discussion on this with Anna Wood on Twitter. Anna was a physics researcher but has changed direction a bit (I know she has done research on improving the educational methods in the sciences):
     
  8. Hutan

    Hutan Moderator Staff Member

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    Thanks Tom.

    I think Covid has fundamentally changed universities, with most teaching offered online as well as, or instead of, in person. So, that creates opportunities for the person with ME/CFS to record lectures, and/or do teaching online in real time. Another advantage of academic work is, I think apart from the teaching, that outputs are rewarded rather than the time put in. So, you don't necessarily have to be at the lab or in the office from 8 am to 6 pm or longer, if you are producing results. It obviously depends a lot on what the subject is.
     
  9. Midnattsol

    Midnattsol Moderator Staff Member

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    While I want this to be true, I've noticed a lot of backlash around online (or even hybrid!) teaching. But also seeing/hearing the "it's the results, not the time that's important", which has been true for me.
     
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  11. Trish

    Trish Moderator Staff Member

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    I think one key factor is whether work is timetabled so you can't take rest breaks when you need them. Teaching, nursing, social care, shop and factory work and many other occupations require the person to be present and fully functioning at times determined by others and with no possibility of taking rest breaks as and when needed.
     
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  12. Adrian

    Adrian Administrator Staff Member

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    I think moves to hybrid and home workng may help some people with continuing to work. Just removing the travel and adding flexibility can help.
     
  13. Adrian

    Adrian Administrator Staff Member

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    My suspicion is it will be very subject dependant and also whether being an academic as a lecturer or as a researcher. I view researcher jobs as having more flexibility but that may depned on whether someone needs to be in a lab for tasks. There are also difficult deadlines around paper submission that are often rushed.
     
  14. Hutan

    Hutan Moderator Staff Member

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    I didn't actually mean it as 'mild' plus 'moderate', I meant it as at the worse end of mild, the better end of moderate. Although of course ME/CFS levels are vague and variable.
     
  15. Tia

    Tia Senior Member (Voting Rights)

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    Do not go into teaching is my advice. (Based on experience!) Sad because it's a brilliant career and I really loved it. But it's not worth your health.
     
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  16. Tia

    Tia Senior Member (Voting Rights)

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    I have a couple of friends who are working as lecturers and finding academia very stressful at the moment but that might be UK specific (lack of funding for universities etc.) Having said that, I think if he's got funding to do a phd it could be a good idea because you can work flexibly. He doesn't have to go on to work in academia afterwards if he decides it's not right but he'd still have a phd to show for 3+ years of work.
     
    Last edited by a moderator: Jul 14, 2022
  17. Midnattsol

    Midnattsol Moderator Staff Member

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    I've given up on wet lab, it's not just being in the lab at fixed times, but also the light/sound/smells. Obviously labs and what one work with are different, but I have only been in one small lab that would not be too much sensory input.
     
  18. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

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    Doctoral study was a good fit for me whilst mild but I think its going to be highly variable, dependent on institution and subject domain. I was fortunate that my engineering group was not at a very competitive university, it was also largely commercial and always needed "students" to do the work. The group paid all university fees and doctoral students were given a tax-free stipend that you could live off.

    We'd work collaboratively on large group contracts for 4-5 years and try to feed in our own research interests during that time. Eventually the Uni would get fed up and force us to write up a thesis, hacking together our parts of that prior work, then graduate. Usually there was a post-doc research position (leading the next group project) available after that. Those that didn't eventually leave to take a job in industry but wanted more seniority would begin to supervise their own PhD students and/or take up lecturing. Optional work was often available too: teaching workshops, marking or exam monitoring.

    I "studied" part-time, usually about 15-20 hours per week in the lab and perhaps a further 5 hrs at home. Many of the "full-time" post-docs just rocked up at 10am and left at 4pm... retained bad habits from undergrad days and because of that they had to crunch hard at deadlines, but that could be avoided. It was all very flexible, too flexible really! When my health failed and I ended up more moderate-severe the Uni were exceptionally supportive and had no problem parking my progress for 18M until I was a little better and able to drag it over the finish line. In the end it took me 8 years to get the PhD, including that 18M break + crawling at the end. Honestly, I would say it requires more willpower and stubbornness than intelligence to complete!

    I think it would be a different experience outside of that big research group, especially if at a competitive uni, with a fixed length & funded project and/or a more modern PhD pathway - i.e. one that includes taught/assessed courses like you'd see at graduate level. Higher workload and higher day-to-day stress probably.

    I'm quite fond of a description given by someone that compared completing an MD to a PhD, after having done both. They suggested both were hard and like swimming 10K, except for the MD you swam in a warm pool, with coaches on the side-lines cheering you and a visible lap counter to rely on. The PhD was more like being dropped in the cold ocean, on your own, then told to swim blindly to where you think the land is... and invent a new stroke whilst you're at it!
     
    Last edited: Jul 14, 2022
  19. Trish

    Trish Moderator Staff Member

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    I agree, though I did manage to stay in part time teaching for more than a decade when my ME was mild, but my health definitely suffered long term and I was repeatedly pushing and crashing. Once my ME reached and stayed at moderate rather than mild, continuing teaching was impossible. The consultant my employer sent me to for a report for ill health retirement said teaching is one of the worst jobs for pwME, and even if my health improved I should never go back to it.

    It helped that I was teaching age 16+ so there was very little discipline problems that can be emotionally draining, and the students were mature enough to get on with work from the textbook if I was having a bad day and needed to just sit at the front of the room and have them come to me if they needed help, so I could pace myself to some extent.

    But it is possible to do part time tutoring from home or work in online teaching in some cases.
     
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  20. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I did pretty well in IT when I was less severely affected. It was sedentary, could work the unpopular night and evening shifts. There were always lots of short term contracts for me and sometimes well paid.
    Not well enough now to travel into an office, even at quite times or work from home.
    There was little career procession though moving from contract to contract and the hourly rates haven't kept up with rising housing and other costs over decades.
     
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