Tips for a student with CFS/ME
I have suffered with CFS/ME for a long time and got diagnosed back in 2022. I then dropped out of high school to be homeschooled, I was doing great and was able to do a lot of stuff like taking care of my rabbit daily, changing his litter etc having a lot of free time to rest, recover when I was sick and taking my time with things. I started a GCSE course in September 2025, so that I can hopefully progress onto A-levels, it's only 3 days a week but I am really struggling, I am always exhausted even though I make sure to have 8 hours of sleep, I fall asleep in class, I am avoiding doing this now by taking a 10 minute break during lessons. I cannot concentrate well for long periods of times, lessons are 1h30min so you can imagine. In biology we have no work at all in class whatsoever it is just listen to the teacher speak so they are the hardest lessons. I experience brain fog and I also feel like I am taking twice more the time to learn than my classmates. I do revise but it is hard especially since I feel I am always behind. I learn more when I am teaching myself or doing work at home. I started trying to reintroduce myself back into education in 2024 I was doing Maths, English and Animal Care, this is when I noticed my cfs/me worsening, today it is currently worse, my speech has deteriorated as in I make frequent speech errors, experience word finding difficulties and often forget what I want to say so I sometimes avoid speaking and stay quiet when I want to say something. I experience headaches and/or eye aches daily, I get sick monthly and it takes me at least 2 weeks to recover. I am unable to do the things I enjoy as often, I cannot play video games a lot and not at all during term time. I am always feeling depressed. College really stresses me out and I often cry because I do not want to go back. I don't know how I am going to handle sixth form college I would've liked to do online school but I cannot afford it and I dont think there is any funding that I know of. Please if there is any tips for surviving in my current situation or if you know if any funding is provided for online school let me know. Thank you
Reply 1
Original post
by HelloKittyCatI have suffered with CFS/ME for a long time and got diagnosed back in 2022. I then dropped out of high school to be homeschooled, I was doing great and was able to do a lot of stuff like taking care of my rabbit daily, changing his litter etc having a lot of free time to rest, recover when I was sick and taking my time with things. I started a GCSE course in September 2025, so that I can hopefully progress onto A-levels, it's only 3 days a week but I am really struggling, I am always exhausted even though I make sure to have 8 hours of sleep, I fall asleep in class, I am avoiding doing this now by taking a 10 minute break during lessons. I cannot concentrate well for long periods of times, lessons are 1h30min so you can imagine. In biology we have no work at all in class whatsoever it is just listen to the teacher speak so they are the hardest lessons. I experience brain fog and I also feel like I am taking twice more the time to learn than my classmates. I do revise but it is hard especially since I feel I am always behind. I learn more when I am teaching myself or doing work at home. I started trying to reintroduce myself back into education in 2024 I was doing Maths, English and Animal Care, this is when I noticed my cfs/me worsening, today it is currently worse, my speech has deteriorated as in I make frequent speech errors, experience word finding difficulties and often forget what I want to say so I sometimes avoid speaking and stay quiet when I want to say something. I experience headaches and/or eye aches daily, I get sick monthly and it takes me at least 2 weeks to recover. I am unable to do the things I enjoy as often, I cannot play video games a lot and not at all during term time. I am always feeling depressed. College really stresses me out and I often cry because I do not want to go back. I don't know how I am going to handle sixth form college I would've liked to do online school but I cannot afford it and I dont think there is any funding that I know of. Please if there is any tips for surviving in my current situation or if you know if any funding is provided for online school let me know. Thank you
Hello,
I have had fibromyalgia and POTS for quite a while, and I understand what you're currently experiencing. In sixth form, I was eligible for the 16-19 bursary (https://www.gov.uk/1619-bursary-fund/eligibility), which made it easier to buy revision guides and equipment that made actually attending in person easier. If you get PIP, you would probably be eligible for this. If your school has someone you can chat to, just having that person can be super helpful. I set up meetings with my French teacher once a week to discuss everything and get it off my chest. The other benefit of sixth form is that some will allow you to do your three A-levels over three years rather than the two that is conventional. Maybe try speaking to the SEND department and seeing if your lessons can be timetabled any differently. But most importantly, be kind to yourself. Being chronically ill isn't something you can ignore, and you shouldn't feel bad when it holds you back. Allow yourself the accommodations you require. Maybe try speaking to your teachers and asking for extra support, such as if they would be able to give you detailed notes that make it easier for you to understand, rather than trying to force yourself to stay zoned in and missing the information when you get overwhelmed.
Reply 2
Original post
by Kit - UOSHello,
I have had fibromyalgia and POTS for quite a while, and I understand what you're currently experiencing. In sixth form, I was eligible for the 16-19 bursary (https://www.gov.uk/1619-bursary-fund/eligibility), which made it easier to buy revision guides and equipment that made actually attending in person easier. If you get PIP, you would probably be eligible for this. If your school has someone you can chat to, just having that person can be super helpful. I set up meetings with my French teacher once a week to discuss everything and get it off my chest. The other benefit of sixth form is that some will allow you to do your three A-levels over three years rather than the two that is conventional. Maybe try speaking to the SEND department and seeing if your lessons can be timetabled any differently. But most importantly, be kind to yourself. Being chronically ill isn't something you can ignore, and you shouldn't feel bad when it holds you back. Allow yourself the accommodations you require. Maybe try speaking to your teachers and asking for extra support, such as if they would be able to give you detailed notes that make it easier for you to understand, rather than trying to force yourself to stay zoned in and missing the information when you get overwhelmed.
I have had fibromyalgia and POTS for quite a while, and I understand what you're currently experiencing. In sixth form, I was eligible for the 16-19 bursary (https://www.gov.uk/1619-bursary-fund/eligibility), which made it easier to buy revision guides and equipment that made actually attending in person easier. If you get PIP, you would probably be eligible for this. If your school has someone you can chat to, just having that person can be super helpful. I set up meetings with my French teacher once a week to discuss everything and get it off my chest. The other benefit of sixth form is that some will allow you to do your three A-levels over three years rather than the two that is conventional. Maybe try speaking to the SEND department and seeing if your lessons can be timetabled any differently. But most importantly, be kind to yourself. Being chronically ill isn't something you can ignore, and you shouldn't feel bad when it holds you back. Allow yourself the accommodations you require. Maybe try speaking to your teachers and asking for extra support, such as if they would be able to give you detailed notes that make it easier for you to understand, rather than trying to force yourself to stay zoned in and missing the information when you get overwhelmed.
Hi,
Thank you for your reply. My current college does not have bursaries. Unfortunately I cannot do 3 years of A-levels as I am already in college and only just doing GCSEs now so that means when I join sixth form college I will be 17 that is if I pass. At the moment I am really struggling with my current college and my GCSEs and I am worried I wont pass because of my condition, I have mocks next week and I need a 5 to get onto higher. I don’t get PIP as I was not aware that people with cfs/me would qualify for it. I honestly feel so stuck
Reply 3
Hi there,
I was diagnosed with ME/CFS and fibromyalgia a few years ago, and I am currently in my third year at university, so I may be able to help you out a little bit!
For starters, I’d recommend reading though this website, it’s all about the funding options for disabled students, you might find it useful:
https://www.disabilityrightsuk.org/resources/funding-further-education-disabled-students?srsltid=AfmBOorGqXwoYVLNVbS8yYFtVYXGvYSTKUiz2JJ1GXnbznNicWZHctWI
Like the other commenter has said, I’d also look into PIP, however, you should be aware that it can be a stressful process, and that there is no guarantee of being awarded pip. If this is something you want to go for, get in touch with Citizens advice, they can help provide guidance with the application process
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/
As a disabled uni student, I was able to get a number of different softwares on my laptop, that help me with my work, on days when my fatigue is harder to manage. A lot of these were paid for by the DSA (disabled students allowance, but this is only available to university students) but you should be able to find free ones that work the same! It would also be worth speaking to your college, to see if they are able to provide any of these things.
Softwares I use include:
* Screen readers- these will read text on your computer screen out loud, which helps if you are too tired to read
* Speech to text (dictation) softwares- this means that you can speak out loud and write, without having to type (you can do this in both Google docs and Microsoft word, without the need for softwares, but they aren’t as accurate)
* Audio capture softwares- these can be used for recording lectures (but check with your college if this is ok first)
* Spelling and grammar checkers- softwares like grammarly reduce the need to spend a long time proofreading work
* Text summarisers- these summarise the key points of documents, so you don’t have to spend as long reading
There are also physical tools available, that might help, such as:
* Bed wedges- these can help support you sitting up in bed, if you can’t work at a desk
* Laptop trays- for you to put your laptop on if you’re working from bed
Also, if you haven’t already (although I’m sure you have!) definitely get in contact with the appropriate team at your college to let them know that you’re struggling- there may be other things they can do to support you!
These are just some things that helped me, hopefully they can help you too! Please let me know if you have any other questions, I’d be happy to clarify things or give any more advice if I can!
Good luck,
Jas
UEA Rep
I was diagnosed with ME/CFS and fibromyalgia a few years ago, and I am currently in my third year at university, so I may be able to help you out a little bit!
For starters, I’d recommend reading though this website, it’s all about the funding options for disabled students, you might find it useful:
https://www.disabilityrightsuk.org/resources/funding-further-education-disabled-students?srsltid=AfmBOorGqXwoYVLNVbS8yYFtVYXGvYSTKUiz2JJ1GXnbznNicWZHctWI
Like the other commenter has said, I’d also look into PIP, however, you should be aware that it can be a stressful process, and that there is no guarantee of being awarded pip. If this is something you want to go for, get in touch with Citizens advice, they can help provide guidance with the application process
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/
As a disabled uni student, I was able to get a number of different softwares on my laptop, that help me with my work, on days when my fatigue is harder to manage. A lot of these were paid for by the DSA (disabled students allowance, but this is only available to university students) but you should be able to find free ones that work the same! It would also be worth speaking to your college, to see if they are able to provide any of these things.
Softwares I use include:
* Screen readers- these will read text on your computer screen out loud, which helps if you are too tired to read
* Speech to text (dictation) softwares- this means that you can speak out loud and write, without having to type (you can do this in both Google docs and Microsoft word, without the need for softwares, but they aren’t as accurate)
* Audio capture softwares- these can be used for recording lectures (but check with your college if this is ok first)
* Spelling and grammar checkers- softwares like grammarly reduce the need to spend a long time proofreading work
* Text summarisers- these summarise the key points of documents, so you don’t have to spend as long reading
There are also physical tools available, that might help, such as:
* Bed wedges- these can help support you sitting up in bed, if you can’t work at a desk
* Laptop trays- for you to put your laptop on if you’re working from bed
Also, if you haven’t already (although I’m sure you have!) definitely get in contact with the appropriate team at your college to let them know that you’re struggling- there may be other things they can do to support you!
These are just some things that helped me, hopefully they can help you too! Please let me know if you have any other questions, I’d be happy to clarify things or give any more advice if I can!
Good luck,
Jas
UEA Rep
Reply 4
Original post
by UEA Rep JasHi there,
I was diagnosed with ME/CFS and fibromyalgia a few years ago, and I am currently in my third year at university, so I may be able to help you out a little bit!
For starters, I’d recommend reading though this website, it’s all about the funding options for disabled students, you might find it useful:
https://www.disabilityrightsuk.org/resources/funding-further-education-disabled-students?srsltid=AfmBOorGqXwoYVLNVbS8yYFtVYXGvYSTKUiz2JJ1GXnbznNicWZHctWI
Like the other commenter has said, I’d also look into PIP, however, you should be aware that it can be a stressful process, and that there is no guarantee of being awarded pip. If this is something you want to go for, get in touch with Citizens advice, they can help provide guidance with the application process
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/
As a disabled uni student, I was able to get a number of different softwares on my laptop, that help me with my work, on days when my fatigue is harder to manage. A lot of these were paid for by the DSA (disabled students allowance, but this is only available to university students) but you should be able to find free ones that work the same! It would also be worth speaking to your college, to see if they are able to provide any of these things.
Softwares I use include:
* Screen readers- these will read text on your computer screen out loud, which helps if you are too tired to read
* Speech to text (dictation) softwares- this means that you can speak out loud and write, without having to type (you can do this in both Google docs and Microsoft word, without the need for softwares, but they aren’t as accurate)
* Audio capture softwares- these can be used for recording lectures (but check with your college if this is ok first)
* Spelling and grammar checkers- softwares like grammarly reduce the need to spend a long time proofreading work
* Text summarisers- these summarise the key points of documents, so you don’t have to spend as long reading
There are also physical tools available, that might help, such as:
* Bed wedges- these can help support you sitting up in bed, if you can’t work at a desk
* Laptop trays- for you to put your laptop on if you’re working from bed
Also, if you haven’t already (although I’m sure you have!) definitely get in contact with the appropriate team at your college to let them know that you’re struggling- there may be other things they can do to support you!
These are just some things that helped me, hopefully they can help you too! Please let me know if you have any other questions, I’d be happy to clarify things or give any more advice if I can!
Good luck,
Jas
UEA Rep
I was diagnosed with ME/CFS and fibromyalgia a few years ago, and I am currently in my third year at university, so I may be able to help you out a little bit!
For starters, I’d recommend reading though this website, it’s all about the funding options for disabled students, you might find it useful:
https://www.disabilityrightsuk.org/resources/funding-further-education-disabled-students?srsltid=AfmBOorGqXwoYVLNVbS8yYFtVYXGvYSTKUiz2JJ1GXnbznNicWZHctWI
Like the other commenter has said, I’d also look into PIP, however, you should be aware that it can be a stressful process, and that there is no guarantee of being awarded pip. If this is something you want to go for, get in touch with Citizens advice, they can help provide guidance with the application process
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/
As a disabled uni student, I was able to get a number of different softwares on my laptop, that help me with my work, on days when my fatigue is harder to manage. A lot of these were paid for by the DSA (disabled students allowance, but this is only available to university students) but you should be able to find free ones that work the same! It would also be worth speaking to your college, to see if they are able to provide any of these things.
Softwares I use include:
* Screen readers- these will read text on your computer screen out loud, which helps if you are too tired to read
* Speech to text (dictation) softwares- this means that you can speak out loud and write, without having to type (you can do this in both Google docs and Microsoft word, without the need for softwares, but they aren’t as accurate)
* Audio capture softwares- these can be used for recording lectures (but check with your college if this is ok first)
* Spelling and grammar checkers- softwares like grammarly reduce the need to spend a long time proofreading work
* Text summarisers- these summarise the key points of documents, so you don’t have to spend as long reading
There are also physical tools available, that might help, such as:
* Bed wedges- these can help support you sitting up in bed, if you can’t work at a desk
* Laptop trays- for you to put your laptop on if you’re working from bed
Also, if you haven’t already (although I’m sure you have!) definitely get in contact with the appropriate team at your college to let them know that you’re struggling- there may be other things they can do to support you!
These are just some things that helped me, hopefully they can help you too! Please let me know if you have any other questions, I’d be happy to clarify things or give any more advice if I can!
Good luck,
Jas
UEA Rep
Thank you for all this information. For PIP would I have to go through the process of getting an EHCP? Or are those separate things? For my college what they currently provide me with is rest breaks during class and exams and I am allowed to take pictures of the board, I am also able to collect my lunch straight away instead of lining up for 30 minutes, I believe I need more support in class so maybe I should bring it up
Reply 5
Original post
by HelloKittyCatHi,
Thank you for all this information. For PIP would I have to go through the process of getting an EHCP? Or are those separate things? For my college what they currently provide me with is rest breaks during class and exams and I am allowed to take pictures of the board, I am also able to collect my lunch straight away instead of lining up for 30 minutes, I believe I need more support in class so maybe I should bring it up
Thank you for all this information. For PIP would I have to go through the process of getting an EHCP? Or are those separate things? For my college what they currently provide me with is rest breaks during class and exams and I am allowed to take pictures of the board, I am also able to collect my lunch straight away instead of lining up for 30 minutes, I believe I need more support in class so maybe I should bring it up
Hey!
No worries at all!
Regarding PIP, i didn’t have an EHCP, but i applied during university. Because it’s a legal process, I can’t really advise you loads on it I’m afraid! Definitely speak to citizens advice (there are other places that can help you too), they can give you the most help with it.
It sounds like you’ve got some good support at college already, but I think more support could be beneficial to you, I’d advise speaking to your college and see what else they might be able to do for you. It’s worth making them aware that you’re finding it difficult! If you don’t say anything, they won’t know how to help you
Best of luck!
Jas
UEA Rep
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