Roughly 25% of ME/CFS patients suffer from Severe ME and they often require specialized care. Most are bedbound, unable to leave their bed. Some are no longer able to speak. And some are no longer able to eat or drink, requiring artificial nutrition to be provided through a surgically-inserted tube.
For more information on what Severe ME is, see this resource from the 25% ME Group.
There is also a short booklet called “Supporting someone with Severe ME”. This booklet is intended to help a carer or other people around you to understand many of the physical and cognitive difficulties faced by a person with Severe ME. The authors also provide an easier-to-read downloadable introduction, as well as an article written for the nursing profession.
A severe ME patient also wrote a book about living with severe ME and shares her experience on a blog called Surviving Severe ME.
If you are currently bed-bound, you can connect with other bed-bound people in our Living Life from a Bed sub-forum.
The following are some patient discussions about Severe ME from our discussion forum:
Few scientific publications focus on severe ME/cfs, and serious misunderstandings about the nature of severe ME/cfs regularly occur. Finally, a scientific journal has dedicated an entire issue to the topic of severe ME/cfs!
On orthostatic intolerance:
People with Severe ME: Do you get light-headed and pale just from sitting up in bed? A new publication finally confirms what you already know- that sitting up causes a sudden drop in blood flow to the brain, due to a type of dysautonomia called “orthostatic intolerance”.
Problems swallowing (dysphagia):
In the most severe cases of ME/cfs, problems swallowing, problems moving food through the intestines, nausea, and spontaneous vomiting can lead to serious malnutrition. Now, a scientific publication finally talks about this serious issue and discusses the tragic misunderstandings that comes with it.