From ME International.
The information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice.
Below is information from the International Consensus Primer for ME that relates to PENE.
We feel it is important all people with myalgic encephalomyelitis (ME) read the ME IC Primer, however, this is written for medical professionals. We have asked members to put the information into wording the average person can understand. This is one example. Other examples are listed after the IC Primer information and also several videos and articles that might help.
“When a person is normal, they can exercise, rest and after a while be back to normal energy. With someone with ME, if they don’t pace their activities and overdo, they use up all of their energy and as a result it takes hours, sometimes days or longer to get back to baseline. Sometimes people will compare it to having a cell phone at 25% and that has to last you for the day. This might be both physical activities or cognitive activity. These can be simple activities, like brushing your teeth, going to the bathroom etc. Taking a shower might take all the energy for the day. This is typically a crash. If patients know when they have reached their limit and stop, they have a much better opportunity to not get worse. The one problem is many patients just don’t have the support in order to rest and pace. They are forced to work, take care of family and children, and find themselves crashing for days. Crashes often happen many hours after the activity is over. Many are not believed by their families and lose family support and must survive on their own, often with limited resources and money. When people push too many times and end up with many crashes often make their conditions so bad that they end up housebound or bedbound. Some even require constant Caregivers in order to survive. People with support and caregivers have the best chance of living a fairly normal life. There are three stages of abilities, Mild meets the criteria for ME but have significantly reduced activity. Moderate means that you are at about 50% of what you did before ME, and the last is severe. These people are mostly housebound and very severe are bedridden and are in constant need of assistance with all their activities.” Pam L.
To read more, click on the link below:
Link to PENE Story