Levels of Remissions
The following comes out of my own experience. There is no literature on remission for CFS. It takes time for the body to “calm down” (i.e. reduce inflammation and immune response), it takes times for the brain to rewire itself and for unused synopsis to start working again, it takes time to get accustom to doing things and being social again.
Walking slowly thru remission is strongly recommended. I felt my remission was fragile for two years and made decisions based on that assumption. Do not put the remission at risk.
Level 1: Technical Remission
This one is very easy to define — would you walking into a new MD’s office meet the criteria for CFS/ME (according to whatever definition you were using). If the answer is No, you are in technical remission. Yes, you may still have many symptoms — but you are technically not defined as CFS/ME. What you are is another question.
Level 2: Able to do Work Simulation for 2 hr/day consistently
This may be something as simple of preparing and cooking a nice meal, 2 hrs of gardening, 2 hrs of house cleaning — without a break or payback on the next day. My work was computer programming — and I volunteer for 2hr/day for 6 weeks before I increased my volunteer hours to 4 hrs/day.
Level 3: Able to do Work Simulation for 4-5 hr/day consistently
The same as above but for more hours, it may include a regular 2 hr walk/hike every day or other non-strenuous activity. Again, the key is no payback on the next day. My own experience was keeping at this level with no issues for 2 months. It is important NOT to push beyond your envelope. Control your impatience. I would call this and the prior levels, tentative remission.
Level 4: Able to do a part time job or volunteering
The prior levels are done in a quiet control environment. Stepping into people contact and socialization is a major step. Dealing with strangers, demands from others (source of stress and thus risk to relapse). Again, two+ months is recommended. I would call this level, reconditioning remission.
Level 5: Return to a low stress job
The job should be 30-40 hrs/week. With executive function being impaired, look for jobs that are being a worker and not a boss. This can often be hard for CFSers because they are often driven individuals. I would call this level, effective remission. You should be able to continue to full remission if nothing stupid happens.
Level 6: Able to take a normal (not high stress) job
Forget ever taking a high stress job again! If a change of manager results in it becoming high stress, do NOT stick it out. Start planning on an exit strategy (quietly) and then do it. Be smart, not combative.
At this point, I would call it full remission.
Know your symptoms for a possible relapse: my own are a dry stress cough showing up, re-appearance or increase of psoriasis, and lastly — my wife telling me that she sees stress in me. With CFS/ME, you only get one warning shot! The second shot is likely going to hit you and may take you down.