how many are there?

[JBoneske]

when it comes down to it, what's your thoughts about how many versions of this illness there are? is there a bunch? a bunch with the same cause? a bunch with different causes?
obviously there are many versions because so many of you have different symptoms other than everyone being wiped out with fatigue.
If there is a common cause it would be much more possible for a cure.
I talked to an important woman in this group who believes there will be a cure in 5 years. that must mean to her that there must be 1 reason for all of this.
just wondering what you guys thought about how many versions and reasons there were.

 

[Wishful]

Plenty of versions. I believe there's some specific biochemical function in common, but lots of ways to trigger it and modify it, and lots of ways for it to display itself as symptoms. I was thinking of setting up a poll to try to figure out sub-groups, but a poll improperly set up is a waste of potential. Maybe better to do a set of different polls for it. My specific questions at this point is how many victims trigger PEM from muscle damage vs muscle usage, and how many have normal physical stamina (and perhaps poor cognitive stamina) vs poor physical stamina.

If we could figure out some of the sub-groups, we could offer better advice. This is obviously not a 'one solution fits all' kind of disease.

 

[Sushi]

I agree that there is probably one biochemical process that is screwed up--in common--but that many things could trigger this. We have tried many times to identify subgroups but as far as we have gotten is to realize that there are many different symptom subgroups--and combinations of subgroups. Research is moving and we may be able to pin things down better soon-ish.

 

[Stretched]

IMO, there is one underpinning malaise (stress within the immune system is my inclination) which is why there is a unified ‘CFS’ that all of us fall under. Like the flu or a bad cold many people feel and manifest it’s symptoms in multiple ways, from slight sneezes to being bedridden.

Looking at it mathematically, say there is a range of symptoms on the ups and downs of the illness but with limits, the ultimate being short of terminal since we have so relatively few, if any confirmations of deaths caused by CFS. (Grab an arbitrary number, say e.g. there are 55 major heading variations, hypothetically... .)

Then there’s a group, say 30% that have some other life illness with some parallel symptoms to CFS who arbitrarily ascribe to CFS or get misdiagnosed but their underlying cause is not that of ‘real CFS, ME, SEID, PEM’ or whatever moniker we all know as the same illness.