Wednesday, February 11, 2015

Potato Pohtahto

The IOM released its findings on ME/CFS today.  They suggested a name change, Systemic Exertion Intolerance Disease or SEID for short.  My first reaction was scorn "Oh great another cruddy name for this illness" but it is growing on me.  I read the slides that were used in the meeting this morning and they are pretty interesting.  NBC totally botched their report on it but that is another rant for another day.

While I strongly believe that their is brain inflammation involved in SEID, there isn't enough solid evidence to use the ME name.  I guess not enough of us suffer from pain either.  I know in my case while the pain was intense it only lasted about a year during my worst time.  I was doing pretty well until I got floxed. 

There is a simplified diagnostic criteria for my illness which is based on actual scientific evidence so it can't be argued with like the other definitions.  I'm kind of bummed that the CCC and the IC for ME are both gone but they were based on clinical experience rather than solid science studies.  

I'm hoping that this will now start to move things in the right direction: more money for research, better controls on study cohorts, more widespread acceptance, more doctor training.  They are going to be releasing a physician's guide for diagnosing and treating patients so that will be fun reading.  I'm actually looking forward to it now.  I'm very curious what they will list for treatments.  I can't wait to take it to my doc. 

As long as people don't interpret "exertion intolerance" to mean lazy, I might be okay with the new name.  At least the name got switched from syndrome to disease.  I guess I'm now officially sick.

Here are the slides from the IOM meeting:

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