Association for Myalgic Encephalomyelitis

Books, Booklets and Other Materials About Living with ME

An ME diagnosis is a shock for most patients. Many sufferers live more or less a normal life with the exception of periodic worsening of the symptoms which may prevent them from going to work or school. However, there are also patients with a severe form of ME who are dependent on their family members not only to provide for them financially but also to care for them. There have been cases of full recovery but they are the exception rather than the rule. For most people, ME diagnosis means they will have to live with the condition for the rest of their lives. To cope more easily, prepare for a life-long battle and learn to live with the condition, ME patients and their loved ones are recommended to take advantage of the many books, booklets and other materials about living with ME which provide answers to most questions.

Starting with the Basics

ME is a very complex condition which is still poorly understood. To make matters worse, there is no agreement about virtually anything in the medical community. As a result, there is a lot of conflicting information about the condition both online and offline. Before starting to read about management/treatment of ME, patients and their loved ones are advised to start with the basics in order to understand what they are dealing with.

Read About New Discoveries and New Approaches to Treatment with Caution

The understanding of ME is progressing at a rapid pace on a virtually daily basis. There are more researchers working on its causes, management, prevention, treatments, etc. than ever before. The results of their studies, however, should be taken with a lot of caution. The headlines announcing revolutionary breakthroughs, new treatments or even cures, etc. are very exciting but it is important to be aware that it takes years of research and testing for efficacy and safety before a new treatment becomes available to patients.

Guides for Family Members and Loved Ones

ME doesn’t cause suffering for the patients alone. It also causes a lot of suffering for their family members and loved ones who suddenly find themselves as sole providers and caregivers at the same time. In addition to informing themselves about the condition and how to help, family members and loved ones of ME patients are therefore recommended read guides on how to live with an ME patient and above all, stay healthy themselves.