People with severe ME/CFS are most likely housebound and/or bedbound and can experience the most incapacitating symptoms. In this comprehensive 12-page leaflet, we discuss the symptoms, some thoughts about management, symptom relief, how you can explain your illness to family, friends, and carers – and the additional support you might be entitled to receive. It contains a two-page checklist that you can pass on to the people responsible for your care, and Hannah Radenkova describes what it’s like being on the receiving end of the stigma that is so often attached to this disease.
Topics discussed include: What do we mean by severe ME/CFS? What are the symptoms? The Disability Rating Scale, Symptom management – what can be done to help? Pacing and energy management – how do I deal with very limited physical and mental energy? What effect can severe ME/CFS have on your emotional and mental health? Making an effort to get your GP on your side, How the main symptoms of ME/CFS affect me, What can be done to ensure carers understand? How do I get help from social services? What aids, adaptations, and equipment are available to me? How can I explain to family and friends how ill I am? Are there any benefits, grants, or permits that might help me? Has any research been conducted on severe ME/CFS? Where can I obtain further information and support?
The ME Association telephone helpline – ME Connect – is available every day of the year, during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm. Please phone: 0344 576 5326 if you have any questions or would simply like to talk to someone who is there to listen.
Please note: Once you have made payment and checked out from the website shop, you will receive a confirmation email containing direct download links to your leaflets. Click the links and you can read your leaflets on-screen and save to your computer, phone, or other device. But you will need access to a printer if you wish them printed.