Wednesday, November 6, 2013

Muddy Waters: the IOM to the rescue, not.

With about 25 years of efforts by some agencies to muddy the waters, while other agents and entities strive to avoid the voodoo and get some serious science done despite many obstacles, it's no wonder there's no one solid definition of ME broadly accepted.

Obstacles include pseudo-science perpetrated by the psychopharm lobby that wants to keep us all on expensive drugs that weren't designed for, and don't work on, ME. Also misconceptions of the nature of the disease, planted, perpetrated, perpetuated, ppbpblpblphh, by the CDC, haven't helped. Their definitions have only stirred up more mud.

And an accurate definition is literally vital: of life-and-death importance. How can a disease be researched, diagnosed or treated if it can't even be accurately described?

Personally, I have become incapable of following the science or the politics of ME. I try to share what has been helpful for me and my kid: info on a good doctor or a pain relief method, stuff close to home. The big picture is way beyond my ability to absorb and still manage to do the day-to-day. Life lately is about medical appointments, insurance denials, treatments, and of course the ongoing struggle to afford not only health care but housing, utilities and transportation. Life is one kid in college on the opposite coast, while the other kid is mostly in bed upstairs in pain. Life isn't allowing me time to understand and share what's going on in the wider ME world.

But I couldn't help hearing about the latest controversy, regarding the IOM. A new acronym to me, it stands for Institutes of Medicine. It seemed they were going to work on a new definition of ME. Good, right?


As it turns out, the IOM has a bad track record, and is being paid big bucks to re-do badly what others have done better, before. This article helped me get out of the "confused" camp on the question.  So I am blogging mostly to share its helpful explanation, but also to make a couple notes regarding things I have shared in the past in this blog.

I know that I have referred at least a couple of times to the International Consensus Committee's criteria and primer on ME. (Two different things but coming out of the same group.) Those, as it turns out, are flawed in several ways: the ICC is muddied by references to the since-debunked XMRV, the primer fails to mention the frequency of HHV6 infection and possible benefits of treating for it when it is found, the ICC falls short on discussing pain while overemphasizing fatigue and the primer recommends GET which has actually proven harmful to ME patients... yes, a valiant effort but seriously flawed.

 According to current ME patient community consensus (MEPCC?) the best existing definition -- which could simply be adopted instead of spending wads of money on a new and probably flawed definition -- is the Canadian Consensus Criteria, on which the ICC definition was based. So contrary to my earlier recommendations of the ICC, this CCC might be the best thing to share around. For now.

In short, with little recourse or resource, we with ME remain in a ghetto of pain and brain-drain, while the money that should be spent on solid study is squandered to make the waters more muddy. We'd maybe do better to go down to New Orleans with Mr Muddy Waters himself, and get us a mojo hand.

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