Is M.E a registered disability?

Sorry I'm just recently diagnosed a week ago still finding out all the info. Apologies if me asking that caused any offence.

I'm a student, I did pay for a doctors letter it didn't have a great deal of detail it only listed conditions. The way they see it is if you don't have a blue badge it doesn't enable you access to adapted toilets and lifts. It is infuriating! I may see if my doctor can back me up though I had got the letter from another doctor as he was the last person I'd seen wig an emergency appointment.

It can be difficult to get some people to understand I did submit my own letter of support I thought I would try to explain it to them . so fingers crossed that helps.

Thanks for your reply

If you are a student you ought to register as a student with a disability and get support from the Student Support department. For example, a young man who has M.E. regularly sees the Student Support at his Uni. They provide him with an assessment of his support needs and ordered a computer and printer so that he can do his work at home. This included any adaptations that he needs. He was also offered the services of a person to assist him to plan his study. The course was full-time but he found it too hard to get to Uni regularly so they arranged his course so that he could attend one day a week and extend the course over 5 years. When he was worse and unable to get his course work in on time he was able to apply for extenuating circumstances so that his work could be handed in much later (at the end of the summer rather than at the end of the term). Now he has had to apply for a year's suspension of his course as he was too ill to continue. He will continue when he feels able to do so, picking up from when he left off. He was getting DLA at a medium rate but has transferred to PIP and has now received it at the higher rate for Care and for Mobility. You ought to be receiving DLA and now probably changing over to PIP. If you have not applied for it, why have you not? Is it because a) you do not consider M.E. sufficient reason to apply b) think it is too difficult to apply c) have no-one to assist you to apply d) have applied but were turned down the first time? It is quite common to be turned down at the first application but you need to have support from someone who understands M.E. to assist you to fill in the form so that you state the problems that you face daily in a correct manner. You probably take it for granted that you are exhausted much of the time and cannot sleep, or wake unrefreshed, or are too weak to get out of bed some days, or regularly are confined to bed for a day or days so your condition has become 'normal' for you. If you are employed rather than a student then go to your GP and ask for them to write a letter for you to your employer stating that you have an ongoing health need and require some support to work effectively, for example some flexibility. The GP 'might' be supportive! Who knows! Otherwise, fill in the form for a Blue Badge and ask you GP to sign it for you. Tell him/her that you need it so that you can park near your work so that you don't loose your job and to enabale you to get your food shop without using up too much energy, thus keeping sufficient energy to get to work. If you need other support, contact one of the M.E. Groups who have a Support Person who you can speak to and who might be able to liaise with your employer. You could contact me directly too if you need extra help as I'm Political Liaison Officer for a local M.E. Group.

Thank you, I didn't know it was registered under that act great information to know.

I should speak more to my lecturers about it I feel I haven't because of worry of their reactions especially when you never know people's response to your illness some have uninformed opinion already just gets my back up.

The problem at this particular uni is they have no support staff or department they have one woman for the whole campus. Spreads her very thinly luckily I did see her at the start of my course and she did a needs assessment and now that I have signed it she can talk with the team leader of the bursary department and sort it. After receiving my letter of support and possibly the fact my mum rang up and gave them an earful they will release a partial payment.

Thanks again for the information I didn't know you could be registered as disabled by your local adult social services. Will be on my to do list

I'm sorry you are having such a hard time I do feel more could be done for people living with M.E

It is understandable you can't keep up with household chore the slightest bit of cleaning exhausts me as I used to be a chef I made dinner for everyone but exhaustion kicked in almost straight away and couldn't clean up or put out the dinner even microwave meals some days have me sitting on the floor exhausted my family don't always quite take to me not being able to tidy at times.

The citizens advice could be helpful I am not aware if they do home visits but maybe they would consider it if you asked. They applied for PIP over the phone with me present and were alot of help.

Thank you that's a great help

Trying to actually get these things done is a nightmare. I have been motivated to take action though after a bus driver left me to walk home about a 2 mile walk today mostly up hill I'm In such pain now I definitely need to look into getting it recognised which I'm sure everyone struggles with. Need a nap lol

I was at my wits end last week I thought I was back to square one. The team leader of the bursary office is fighting for me but the guy above her keeps cutting the amount. I don't think they have registered me as a disabled student but I am looking into doing that with a tymes trust card. The tymes trust writes to the college for you and specifies your needs.

I do see a woman at the support but I haven't been told to apply as a disabled student.

I wish I had been a member of this site a long time ago. I have M.E and hypothyroidism and have been signed off work for more than six months with a flare up, exhaustion, depression and the pain that accompanies my conditions. I have had a hard time at work, no exceptions have been auctioned because of my condition. Recommendations have been made by Occupational Health advisor, but it is advisory and not compulsory apparently. My doctor says that everything has been tried treatment wise and I just have to go with it. I have come to the conclusion that my job may be too tough for me to cope with on 30 hours a week, but as a single person I have to do the 30 hours to get working tax credit. Because I am ill I have lost that and am now on ESA of £148.?? Per fortnight. It is so hard to run a home on this amount of money when healthy food costs more than cheap filling carbs that don't help my condition. If there is any advice and knowledge available I would be so grateful. Thank you for patiently reading my post.

Thank you Stephenk that was helpful