
Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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I've noticed a number of people on DS are studying at College and University.
I feel it would be useful if we were all to share knowledge of what help SHOULD be made available to students to enable continuation of study and tips on reducing the stress of meeting the ever present deadlines.
I'm a mature student in my final year of Undergraduate study and have had CFS?ME throughout my time at University. I've found that help is available but you have to find out what that help is and ask for it or it will not be forthcoming. It's been a struggle and I've had to change to part-time study, ask for numerous extensions and mitigating circumstances, but am still there hanging on by the skin of my teeth.
I am very interested to find out what is/isn't avalable in different countries and also what you think would help you, even if it something not on offer right now.
This discussion may also apply to younger DS members who are attending school.
Look forward to hearing from you. Best wishes in your studies.
Poppyred xoxo
I feel it would be useful if we were all to share knowledge of what help SHOULD be made available to students to enable continuation of study and tips on reducing the stress of meeting the ever present deadlines.
I'm a mature student in my final year of Undergraduate study and have had CFS?ME throughout my time at University. I've found that help is available but you have to find out what that help is and ask for it or it will not be forthcoming. It's been a struggle and I've had to change to part-time study, ask for numerous extensions and mitigating circumstances, but am still there hanging on by the skin of my teeth.
I am very interested to find out what is/isn't avalable in different countries and also what you think would help you, even if it something not on offer right now.
This discussion may also apply to younger DS members who are attending school.
Look forward to hearing from you. Best wishes in your studies.
Poppyred xoxo
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My lectures are now being held in a new building which is a long walk from the nearest car park (I get a lift there with a friend as the journey takes around 1/2 hour). I've recently bought a wheelchair and my friend pushes me to lectures and the library etc. I am aware that, should I need it, I am entitled to have a support worker wheel me around campus. Having the chair has made a huge difference. I can now sit through to the end of the lecture (have fallen asleep in the past!) and, after a rest, am able to do some study afterwards.
I record lectures as well as take notes and use a speech recognition programme when writing essays.
It's taken me a long time getting there but have found using these measures all help save energy.
I'm so pleased to see that you are finding ways to continue studying. I think the positive aspects of my time at Uni far outway the stuggles, I only wish I had accepted this illness and worked within it's limitations sooner instead of pushing myself so hard.
A.
Even if your ME is not too bad at the moment it would be a good idea to go to your University's student enablement centre and talk to an advisor. They should give you a form to apply for DSA (Disabled Student Allowance). Even if you think you don't need it it is highly advisable to apply as soon as possible. You will then be given an assessment of your needs which opens the door for your University to provide support if and when you need it. Support may include things such as:
Funding to buy a laptop..
Funding to buy voice recognition software.
Funding towards transport costs.
Provision and funding of a support worker to push wheelchair.
Provision of suport worker to find and get books from library shelves.
A scribe to take notes - even when you are unable to attend a lecture.
I was asked to complete the form early on but, at that time felt unable to do so. It was part of the denial/acceptance struggle that we all seem to go through. At that time I was not ready to see myself as having a long-term condition and could not cope with talking or writing about my symptoms.
A counselling service, to help deal with adjusting to having ME was offered. Didn't not take up the offer. *sigh*
I wish now that I had taken up the offer of counselling and asked for help in completing the DSA form. It would have made things simpler later on.
I hope that sharing my experience will help those of you who are starting out on higher education seek the support you need far sooner than I. It is there to help you achieve your goals.
Best wishes with everything,
Post your graduation photos in the future! xoxoxo