I think people suffer in silence much of the time. I did - for years - before going to a doctor, only to be told it was "all in my head" and/or "fibromyalgia" (I still get told this even after my Lyme diagnosis). People don't know and neither do the doctors what all symtpoms are from Lyme vs. something else. And with no explanation or no money, people don't get treatment even for their symptoms, or maybe that's all they get (even some with a rash & proven tick bite only get symptomatic treatment). So these folks go on to become disabled later in life because they ignored symptoms (i.e., just grin & bear it) or were unable to be properly diagnosed/treated.
One statistic I saw somewhere says up to 90% of people diagnosed with Fibromyalgia actually have Chronic Lyme. That's a lot of people. So I think the answer to the question posed at the start of this thread is that the people with Chronic Lyme are in other support groups due to misdiagnosis and ignorance.
Just my humble opinion,
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds: Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).