• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Why is the forum not separated by subtype/subgroup?

U

Uknmy

Messages
56
taniaaust1 said:
Uknmy, I think that would be way too hard and akward to do, lots of people dont even know their subgroup when they come here and how would one distinguish the subgroups. There seems to be quite a few different ones beyond just the CFS or ME thing eg the EDS/POTS/mast cell disorder combo subgroup seems to be a possible distinct group.

The best thing to do if to get to know the regulars and work out who has like illness so to know who posts may contain the most useful advice for you. And when it comes to studies.. check to see how the participants were picked to see if it fits with your own illness. eg I think Im at much greater risk of getting thyriod cancer as I matched the selected participants in one ME/CFS study who also had certain other issues and the study showed a much higher risk of this cancer with that group. It was recommended that those who had all those things have a scan every couple of years for thyriod cancer due to the increased risk.
Click to expand...

I don't think you fully understood what I was trying to say. But that's okay. Rather than explaining it, I'm just going to do it.
 
You must log in or register to reply here.