@Janet Dafoe (Rose49)
This panel and Q&A is long but really good and worth watching
I watched this and one thing that stood out above everything else is that Ron stated that he has EDS. In my opinion, there just has to be some kind of a genetic connection with an outside insult that "switched on" ME. Also interesting is he mentioned he believes ME, GWS, PANS and FM could be the same thing presenting in different ways.
I find it very interesting that there are a lot of diseases that like to hang out together, so maybe the net should be cast a lot wider. For example, it is common for someone that has asthma to also have eczema. They are friends that like to hang out.
ME, POTS, MCAS like to hang out together. One person may have one, another multiple. There is a lot of talk recently about EDS and CCI. This may be a puzzle piece for some patients, but not all....
Here is a snapshot of my dad's side of family:
My paternal grandmother has hEDS, MS, sensory issues, allergies, crohn's disease (and other health issues)
She has 2 children.
-My father has crohns disease
*My oldest sister has hEDS, scoliosis, sensory issues and 2 years ago started having ME like issues after a severe infection (PEM and OH)
-Her oldest son has asthma, allergies, eczema and vocal/physical tics
-Her next son has vocal/physical tics, allergies, depression
-Her youngest son has sensory processing disorder
*My next sister has anxiety and OCD tendencies
-Daughter completely healthy
-Son has a information processing learning disability, eczema, allergies
*Myself - ME/CFS (after mono) chronically reactivated EBV, psoriasis, allergies, hypoglycemia, POTS, nOH, hEDS, MCAS issues, sensory issues, spinal issues, OCD tendencies etc. etc.
-First son OCD, depression, anxiety, scoliosis, vocal/physical tics etc.
-Second son depression and vocal/physical tics, eczema
*Younger sister allergies
-First daughter completely healthy
-First son completely healthy
-Second son sensory processing disorder, Autism spectrum
-Second daughter completely healthy
-My dad's sister has MS and recently diagnosed with breast cancer
*Her daughter (only child) has eczema, allergies and celiac disease
I think researchers should not only be looking at the patient, but also looking into family history of patient. I think there may be some clues hiding in plain sight....