Posted by: stephencollier
May 17, 2009 |
When I read up on CFS/ME/FM I usually see FM/CFS or FMS/CFS. It seems to me that the real political power is held by the term Fibromyalgia. The problem is, of course, that FM has a definition that centers on the pain, even if people in the FM camp tell us that the fatigue is more debilitating than the pain. On the other hand, it's likely that the chronic pain is what has given FM this clout.
From a patient's perspective, we all need help with Debilitating Fatigue. It really doesn't matter which disease is the source, Lyme disease, ME, sleep apnea, one of the viruses, etc., or the unknown mechanisms. When we have Debilitating Fatigue, we need help getting better, which means we need a real protocol to eliminate known specific causes (or get the treatments for a found cause), and to get help when we fall into the unknown category, and help dealing with fatigue in general since some of the solutions now known will help with all types of fatigue.
We need:
1) To combine these unknown and similar diseases into one group that has the serious political power, funding, and medical efforts needed to help millions of suffering people.
2) To get a proper protocol that is well known to practicing primary physicians so that these millions of people can actually get help.
I personally think that the term Fibromyalgia has the clout needed for the political effort. The problem is the definition (which I think might also be a problem for FM patients as well, as doctors may be too cued in to the pain aspect of FM and not the fatigue aspect of it). I just think that all the seperate efforts in dealing with ME, CFS, and FM should be combined and that it's a waste not to do so. |
