News from Columbia University: Will it make a difference?

Well, after the news and hype about the new name and definition over the last few weeks, something happened that actually might make a difference.

A group of researchers out of Colombia published the findings of one of their studies, which show clear immune dysregulation with M.E./CFS.  Note: rather than a broad definition, the patients they studied had to meet two definitions of the illness, including the Canadian Consensus one which is quite specific.

In very very simple language, they found that M.E. patients in the first three years have a very heightened immune system (over-regulated cytokines…cytokines are the proteins in the blood that signal the immune system to ramp up when you have an infection).  After three years of being ill with M.E., the majority of these proteins then become down regulated (compared to healthy controls) showing an exhausted, or worn out immune system.

http://cii.columbia.edu/blog.aspx?cid=yEsoKU

The lead investigator was from Columbia, but authors on the paper include a lot of the big name M.E. specialists as well as researchers from Harvard.  However, will this be tossed aside as well?

It's funny, I must have read at least a dozen press releases over the last 2 years, talking about a new study and stating "New Findings confirm Chronic Fatigue Syndrome is a Biological Illness". In fact, I read press releases about studies 10 years ago, that claimed "CFS proven to be biological" and still, a good proportion of people, including doctors, still think it's about fatigue, and/or motivation.

If you watch that short clip, the lead investigator makes the point that this immune system problem is not something to be 'overcome' by trying harder (as everyone who has this knows).

Anyways, this is the kind of thing we need to change the stigma, not a new name.  I wish the US government (HHS and NIH)  had put the money they sunk into coming up with a new (again) definition and name, into funding some solid research like this.  When there's a biological marker (blood test, scan)  the definition won't matter much at all.  The question is, will this research be tossed aside for some reason?

I hope not.  I actually sent some money (small amount) to the Colombia crowd funding campaign to support one of these studies.

Anyways, time will tell.  There's supposed to be another big study of theirs coming out in the next two weeks.  I think between the Columbia group, the Standford group, and the researchers in Norway, we have reason to hope.  Psychologically, I can't risk getting my hopes too high…but at least there's a few big studies in progress that might make a difference when it comes to stigma (within the medical community especially).

These studies take so long to replicate and publish, that I don't expect there will be a diagnostic test in my lifetime. But I love imagining that when some young, active, healthy woman comes down with M.E. 20 years from now, and she knows she's terribly ill, that when she goes to the Dr., there's a test to diagnose her and even treatment options…wow! what a great thought.