Edit: including some of my initial thoughts previously on the first post here...
ME/CFS, POTS, Chronic Lyme, CEBV, MSIDS, CIRS, MCAS, PANDAS/PANS, Fibromyalgia, GWI, and MCS comprise a constellation of conditions all involving nonspecific immune dysfunction often following some sort of traumatic trigger.
Many of their symptoms overlap and patients frequently carry multiple diagnoses. Due to the lack of reliable biomarkers for most of these conditions, a person's diagnosis can end up being a product of chance, specialist proximity, and the keywords they type initially type into Google (and specialists they subsequently seek).
In my case because I live close to Dr John Chia, I was diagnosed with a Chronic Enterovirus. I'd probably have a diagnosis of seronegative Chronic Lyme if I'd seen Dr Richard Horowitz, or just POTS if I'd stopped at my cardiologist.
Are these merely shades of the same immune dysfunction? Are they completely discrete diseases? Is the truth somewhere in between with overlap and misdiagnosis occurring frequently?
Some food for thought...
- Dr Robert Naviaux demonstrated a metabolic pattern for ME/CFS that is distinct from Chronic Lyme.
- Another study recently showed different brain imaging in GWI and ME/CFS (also borne out by Dr Nancy Klimas' differential immune profiling).
- To complicate matters there's Fukuda and Canadian Consensus diagnostic guidelines that allow for much heterogeneity within ME/CFS.
- From reading patient forums there are clearly ME/CFS subsets that are profoundly different from each other, and may have more in common with a given subset from another constellation condition.
- There's also the thorny debate over ME vs CFS vs Chronic Fatigue as distinct entities
- There's Dr Naviaux's contention that all chronic diseases are governed by a stuck cell danger response
- And there's also the philosophical question of how you define a discrete disease, and where you draw the line in the age of personalized medicine / genetics.
Because most of these conditions have poor funding, conflicting studies, and few approved treatments, anecdotal patient experiences are often key in planning a treatment protocol.
Certain conditions are more closely associated with specific treatments, yet it seems that there are examples of all conditions benefiting from a given treatment used in this constellation (e.g. a Lyme patient benefiting from Valcyte, or a POTS patient benefiting from Doxycycline).
As a practical matter even if one carries an ME/CFS diagnosis it's often useful to look at treatments for one of these other conditions when putting together a holistic treatment plan.
