In general, the severe fatigue(mostly occurred since about 2014) in Jin’s disease is comparable to that of CFS, but milder than many of them(some of them are unable to get out of bed), his difficulty in cognition is higher than many CFS patients.
The most difficult and dangerous period he experienced was from Jan 2017 to about Apr 2017. At that time, due to the extreme severe fatigue, daily activities like getting out of bed and walking several steps were very hard(still possible) most of the time. Feeling like abyss, he had no single idea about anything he could do to alleviate the fatigue and whether the fatigue will past eventually. After searching terms like “disorientation”, he accidentally found the disease he known little of but seems similar to his — CFS(Chronicle Fatigue Syndrome). Many symptoms were so similar which made him believe that it was highly probably that he got CFS, this helped him survive that most difficult and dangerous period:
1. He was then absolutely sure about the extreme severity of the symptoms even if people around him ignore it, because he had known that so many people in the world have exactly the same symptoms he was experiencing;
2. He was then absolutely sure that it is justified to ask for more help and support from others after learning similar experiences of others;
3. The guidelines in online sites and forums of CFS[1] helped him greatly(e.g. “just try walk a few meters each day in the days you feel extreme difficult to do daily activities” etc.), he started to learn which kind of activities may be easy or hard which is critical for him when he tried to make a possible plan for daily activities in the sense of extreme exhaustion which will be big help if succeed, because it brings hope — something could be done to avoid unnecessary load that brought more fatigue constantly and increase possibility of suicide, and if he survived the darkest months by following these guidelines fatigue may be more bearable and he may finally survive.
After about Apr 2017, things got better — fatigue was not extreme serious(though still serious), and he could do some activities(though heavily limited) . And not after long he found that the disease seems to be quite different from CFS:
1. The extreme severe fatigue is comparable to CFS but difficulty in cognition seems to be a lot higher than descriptions in most cases online;
2. It recovers far more quickly than CFS. The same reduction in fatigue in the several months of it often cost years in CFS, according to the online descriptions of many cases.
So he started to wonder what it really is if it is not CFS and got initial answer by chance in 2017 summer.
[1] Phoenix Rising ME_CFS Forums