Studying while coping with CFS

Hello Peter,

I have a 19 year old daughter whose ME stopped her from going to uni last year.  We've considered OU study, but as her major problems with ME are to do with isolation and missing out on the normal life of a young person (as well as the tiredness, depression, low self-esteem, etc) we thought it might create as many problems as it would solve.

 As a CFS sufferer I have just returned to study after having to give it up five years ago when I became ill.  I would encourage other sufferers to consider OU study and to look into the help that they could get through DSA and to look at assistive technology which could really make studying easier than anticipated.  Like everything else it is not necessarily easy but definitely worth the effort and there is no denying that there is a sense of achievement at being able to write an essay!

 I agree with Karen and Sandra -

As a teenager when I first came down with CFS I wouldn't want to consider the OU as I felt I would be missing out on social interaction and I think this would have made me worse in the long run. However I also made the wrong decision in going to university in London where life was extremely tiring and stressful.

Personally if I could rewind the clock I would have attempted a much more managable university and degree, e.g. close to home/campus-based. But it all depends on your general level of fatigue - some people seem to not have it too bad and cope fine, others like myself are affected badly.

However, if the person affected is past the 20-year old mark I would highly recommend giving the OU a go as there is nothing at all to lose by trying it. At the age of 25 it is perfect for me and I wish I had started earlier. The great thing I find with the OU is that it is aimed at part-time students and therefore it gives plenty of room to keep a social life and a job. Or for sufferers of CFS, the full-time job of coping with fatigue. Also as courses have more flexibility than at residential universities, it makes things much easier in times of relapse.

All the best for your son's future.

Hi there, just found this forum and platform. I would encourage anyone with chronic fatigue related conditions, who would like to do some university level studying, to sign on with the OU. 

There are quite a few email social groups. The groups that were on FirstClass conference system will soon be migrated to Moodle (another bit of the OU webpage forums). And the chronic fatigue social group (part of Open University Student Association) on FirstClass has been very busy and very, very helpful - so I would expect that to continue when it is moved to Moodle.

The huge advantage of OU over other forms of studying - is that you study when you are well enough to do so. And generally if you have a week or two when the fatigue is just too much - then you catch up later. There are modules with a variety of different study hours required - some can take just 4 hours a week, some 8 hours, others require an average of 16 hours a week. 

All of the tutors I've had so far have been very understanding when it comes to needing extensions. And often they are able to advise which book chapters can be skipped if time and energy require it. 

As other have also said, the Disabled Student Allowance (available if you study 60 credit modules) can provide useful technology - like speech to text software (it types what you speak) and text to speech software (it speaks what it sees). 

There are also a variety of alternative formats for different modules. Most modules have the books in comb-bound versions - so they lie flat and do not need to be held open by hand. There are also some modules with audio versions of the books. And transcriptions of audio / CD materials. 

I would not be able to study without the OU - other options are too exhausting for me. 

All the best.

hi, i suffer with chronic fatigue as part of hypermobility syndrome/ehlers-danlos syndrome hypermobility type and started an ou course because i could not manage college. since i left college and started with the ou the i'v been able to manage my condition so much better. it is really good for me because i can study when i'm upto it and fit my study around the rest of my day to day activities. the thing that helps the most is i don't have to get ready to go to out and travel in order to study. it means i'm far less tired and have more time.

i don't get to socialise as much because i'm at home all the time but i feel that when i do get to it is better. when i was at college i was in too much pain to talk to other people anyway so was even more isolated. at the moment i go out once a week to a girls and womens centre i was refered to when i left college (it used to be ywca but changed its name to platform 51). it is good because i don't have to do anything streneuous i can just sit down and chat to other people.

i would recomend taking an ou course to people with chronic fatigue or pain but i would also recomend starting out with a course that has only a few hours a week so you can gauge how much you can manage. i started with one with a study time of 4 hours a week and have found this is probably the most i can cope with for now. if i wasn't taking an ou course then i don't know what i'd be doing because i cannot manage education any other way and i am too ill to work.

Hi Peter, I have fibromyalgia which has similar symptoms to ME.  I have found the OU very supportive, both from my central office (Belfast) and from individual tutors.  I have started courses and stopped part way through and as long as you dont beat yourself up over it it is fine.  Earlier this month i missed an exam and will get the opportunity to sit it in October. 

I do recognise what other people are saying about not having the social aspect but for me actually I found going to tutorials once a month, along with adding a few students to my personal facebook page and the forums to be more than enough of a social element.

My suggestion is that your son gets in touch with the OU if he is interested and start out with a taster course to see how he finds OU study- or comes onto the forum to talk to a few other students.  You havent mentioned if he was at Uni before or what level of study he has achieved but the other positive for me of the OU against bricks and mortar unis is the Open Degree- you have so much to choose from and if you have done any study at a university level before you can transfer those credit points to your new Open university degree.

 Hi, my name is Roisin, I'm 18 and have had CFS for 4 years. I've completed my GCSE's and A-levels at home because I couldn't attend school, so the OU seemed the logical choice for me. I'd recommend the OU for your son as it's really flexible, I get so much more support than I ever did at school which has really helped me to manage the disease better. He will miss out the social aspects a Bricks and Mortar university can offer, but I know with ME this can be very difficult anyway. Good Luck.

i wondered if anyone was still on discusssion? as its a while ago anyone posted. i suffer with m.e and fibromyalgia and am starting in feb 2013 on criminology and social sciences course. xxx

 Hi, I was just thinking the same Joanne,but since you haven't receivea reply I'm guessing the answer is no. I am also a cfs sufferer and I'm starting in October doing a health and social care modular , I'm doing a open degree and including psychology and health science.

i do wonder how I will cope having cfs and studying as its been a very long time since I did any kind of academic study,I'm 41 and have 4 children prio to being ill I worked a 63 hour week that all seems a life time ago now, although I only class myself as being properly ill for 2 years truth be known I soldiered on a while before hand,

Any way if anyone is still about would love to chat get tips etc
Sonia

 Hi, I was just thinking the same Joanne,but since you haven't receivea reply I'm guessing the answer is no. I am also a cfs sufferer and I'm starting in October doing a health and social care modular , I'm doing a open degree and including psychology and health science.

i do wonder how I will cope having cfs and studying as its been a very long time since I did any kind of academic study,I'm 41 and have 4 children prio to being ill I worked a 63 hour week that all seems a life time ago now, although I only class myself as being properly ill for 2 years truth be known I soldiered on a while before hand,

Any way if anyone is still about would love to chat get tips etc Sonia