We have a really busy and very friendly community Facebook page and encourage anyone who has a question about ME/CFS or living with this condition to contact us via Facebook messenger.
We will do our best to answer your question ourselves and signpost you to further information, but we can also post it to our Facebook page, anonymously if required.
This way others in our community can share their experiences which can help you to understand how they have found solutions or ways that might address these issues.
ME/CFS can be a very isolating illness to try and cope with, and sharing experiences can put you in touch with other people who will have encountered similar problems.
People with this condition are incredibly supportive and very generous in sharing their lived experiences – and you may find that in allowing your questions to be posted on our Facebook page, you can feel less alone.
Recently we had a question about financing the cost of daily needs and disability equipment:
“I am really getting very depressed as no matter how much I try I cannot get help with the following:
1. How can I go about getting a walking frame and commode for the days when I am bed bound and have to crawl in my knees to get to the toilet? Have tried my occupational health at my place of work (NHS). My GP surgery are no help.
2. I have been funding all my aromatherapy, vitamins and minerals supplements but am starting to run out of funds. My GP and ME clinic are not prepared to help me with vitamin C and B injections as the NICE guidelines don't recognise the benefits of these treatments. I have found them of benefit.
I believe there is a way to go through the NHS – can anyone signpost me in the right direction please?
ME Association response:
We suggested that perhaps a care needs assessment is warranted and that contact should be made with the relevant local authority. Also that Personal Independent Payment is a benefit that should be applied for and then used to help assist daily needs such as purchasing items that are necessary, or that will make it easier to manage. And that finally, a disabled facilities grant could allow necessary changes to be made to this person's home to better help them cope with their fluctuating and continuing needs.
Care needs assessment
Information about obtaining a care needs assessment can be found on local authority websites and an approach should be made to them direct after perhaps having discussed this with your GP.
NHS Choices provides an overview of this service on their website that also explains the necessary criteria which need to be met.
We have also produced a guide to getting help from social services that takes into consideration all the changes that have occurred in relation to obtaining this kind of help and how best to apply for it.
And we have a ‘to whom it may concern' letter explaining why a person with ME/CFS might be in need of disability aids and equipment.
Personal Independence Payment
Personal Independence Payment (PIP) is a benefit that can be claimed by anyone who is affected by a long-term health condition like ME/CFS.
It is not means-tested, and you do not have to be out of work to claim it. The ME Association has a guide to making an application for PIP, that has reportedly proved an extremely useful resource and we have updated it to comply with all the latest changes.
Disabled Facilities Grant
The Disabled Facilities Grant is explained more fully in our leaflet on the subject and can also be claimed via your local authority.
Again, we would recommend that this be discussed with your GP in the first instance, as they will need to provide medical evidence to support any application.
The grant is means-tested, but if you are successful then it will not affect any of your other benefits and can be used to, for example:
- widen doors and install ramps
- improve access to rooms and facilities – eg stairlifts or a downstairs bathroom
- provide a heating system suitable for your needs
- adapt heating or lighting controls to make them easier to use
If you need to talk to someone
The ME Association also provides a telephone helpline offering support and information.
Each call is dealt with sensitively, professionally and, perhaps most importantly, in total confidence by members of our fully trained team of volunteers – most of whom have personal experience of ME/CFS.
You can contact ME Connect by phoning 0844 576 5326 during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm, or by email (firstname.lastname@example.org) at any time, and we will respond as soon as possible.