I have been sick for 10 years now and been a member of this forum for several.
I see a few arguments constantly resurface and essentially sabotage existing, otherwise useful conversations.
One of them is this:
- Group A: " cfs is a single, heterogeneous disease with different manifestations in different people. Like cancer for example"
- Group B: " no! cfs is a multifaceted, multiorgan, multi-group, multi-[insert word]. In fact some go further and say cfs is many diseases etc.
I think both can be true. Again, like cancer, its a single overarching cause but it manifests in different sub-types. BUT in order to understand the disease and come up with a cure we need to study the different aspects of cancer to get at its core cause. CFS may be multifaceted but i think what binds it all together is this PEM which is very unique to our kind of fatigue.
Also as the role of supplements, they are just chemicals the government decided to allow OTC versus prescription medication. There isnt like a real delineation in terms of their pharmaceutical effects. So, sure, someone could get better with supplements. I find COQ10 and selenium, theanine, BCAA and nicotine, all marginally helpful. But they are not a cure in any way. Otherwise we wouldn’t be here. I’d be out running and doing yoga.
But for the first time I feel like something is getting at the core of my cfs: abilify.
I think the most helpful goal of a forum is to share our personal experience with various things we try and somehow have this large collective, crowd sourced clinical trial sort of effect ( instead of getting stuck in semantics).