This section describes MY take on the Perrin theory. I interpretated the book and the conversations with Dr Perrin and related it to my experiences. This will obviously be very individual to me but I feel confident in doing that and wholy non-qualified to discuss the theory itself. Dr Perrin has provided some feedback on this site in the blog and I suggest reviewing the links provided for background and detail.
My two key assumptions I have developed from Perrin which relates to my experience:
LONG TERM BUILD-UP - deterioration in toxin drainage from brain via lymphatics 'slowly' affects hypothalamus which regulates the autonomic nervous system. The symptoms aren't identifiable as M.E. at this stage but retrospectively I can see flags in the previous year.
CRASH - Major breakdown in lymphatic system function, in my case it is likely that multiple ME-related viruses (EBV & CMV) caused 'crash' which affected hypothalamus / sympathetic nervous system.
PROGRESSIVE DETERIORATION - on-going increase in symptoms as the sympathetic nervous system becomes increasingly unreliable due to hypothalamus 'poisoning'.
INTO THE BLACK HOLE - eventually, the sympathetic nervous system disruption prevents delta-wave deep sleep preventing the body's overnight restorative processes. The body & mind become completely exhausted.
The symptoms I experienced I classified into 4 areas with a scoring system relating to overall severity.
Please see the reference section for an explaination of terms and useful links.
The following are links to videos which I have found useful in particular to understanding more about the various theories involved:
Perrin Lecture (2009)
CrashCourse - Autonomic Nervous System (watch episodes #13, #14 & #15)
I developed my own scoring system, tracking how I felt hour-by-hour. The matrix shows some indicative triggers I used to identify my hourly 'level'. The levels and colour coding try to describe my ability to function. Mild level was life-affecting in terms of relationships with moderate & severe levels completely debilatating to normal life.
i've provided the graph tracking my symptom level from crash to return to work in the links & resources section.
Constant feeling of 'hangover', from mild to heavy. A general flu-like feeling (without the runny nose and coughing) that could mean hot or cold flushes, poorly tummy and other general 'feeling unwell' symptoms.
Seemingly relatively personal to me (other people have all body pain with fibromyalgia) but a level of neck pain was always aligned to my overall symptoms. Located in the general area of the muscles in the back of the neck. Stretching, massage or medication didn't improve it. This may be related to the lymph nodes in the neck?
Linked to the flu-like symptoms but going deeper and more pro-longed, the 'brain fog' would cause cognitive breakdown, to the point where conversations with my family & friends became almost impossible. I would have to remember who they were and what we were talking about, each time I wanted to speak.
Initially, low energy levels like you would experience when you were ill (for example with flu). However, once sleep became affected the impact was almost total, especially after multiple days of layered exhaustion. I refused to remain in bed all-day but had many days where I made it down to the kitchen table, only to pass the day in a blur sat in the same position.