For newcomers: disease definitions are critical. This post will not illuminate the general issues, but others will.
A new definition, called the International Consensus Criteria, has been approved for publication in what seems to be a pretty major journal.
My bottom line: this is a huge improvement. I am grateful to the authors. I think it deserves our support.
It is an extraordinary effort, global and voluntary.
Sure, there are things that are being worked on. I look forward to differential diagnosis, biomarkers in particular, practical suggestions, prevalence data, and many other things. There is a question about its specificity that I don't know the answer to yet. For what it's worth, from a personal perspective it feels extremely watered down, as it requires only a minuscule fraction of my symptoms and it only even mentions in total a fraction. I might like to see a dimension of severity that measures number and type of signs and symptoms and not only degree of impairment. HIV/AIDS seems to do that. There are questions about the mild end too. There are subtleties of defensive wording and defensive thresholds and timing and tradeoffs and compromises. People are doing good analysis of this definition, and all of it is important. …
… However, there's an overriding factor: artillery shells are exploding all around us. This is the best and most usable definition we have. The authors continue to improve it. Nobody will be left behind.
This is elevated ground. It is a starting point. Its predecessor made me feel uncomfortable (even though it was the best we had), this one much less so.
Our urgent goal is defending and furthering science. Without research, physicians have nearly nothing they can do, and the ICC is a huge opportunity for getting research done.
As long as it lets in few false positives and is reasonably representative — it doesn't have to be perfect but it does have to be good enough and it does have to be used — I am going to call it a winner.
As a battalion commander who served as my typist was fond of saying: that sounds like a plan.
Speaking of which, given that this is a war between allowing science to happen and stopping science at all costs, let's have USA's General George Patton close out the post.
My men don't dig foxholes. I don't want them to. Foxholes only slow up an offensive. Keep moving. And don't give the enemy time to dig one either. —
Pushing means fewer casualties. I want you all to remember that. —
A good solution applied with vigor now is better than a perfect solution applied ten minutes later. —
Have taken Trier with two divisions. What do you want me to do? Give it back? — to Eisenhower (after being told to bypass Trier because it would take four divisions to capture).
Accept the challenges, so that you may feel the exhilaration of victory. —
Thank you, George. That works.
Samuel
Soon after the initial wave of pleasant surprise passed, I thought of this:
ReplyDeletehttp://xkcd.com/927
Will the denialists stop using their stupid definitions because of the new ICC? Not a chance. But it's still good to have an improved definition out there.
Well we should not use stupid definitions or link to them, especially CFS. ME/CFS is not a valid diagnosis or term.
ReplyDeleteThe recent, embarrassing, public pity party by Simon Wessely may be a preliminary volley against this new definition - which is the best endorsement I can think of.
ReplyDeleteI felt that there was not enough emphasis on immune biomarkers and viruses - not surprising given the authors - but it IS a workable definition, and a sufficiently serious journal that reservists can cite it and do work om M.E. if they want.
And it gives us a simple citation to use when trying to persuade outsiders that the Wesselyites have omitted a huge body of scientific literature.
All good things.
i have to agree with consensus so far: something is better than nothing. "this illness" has sparked a high level of controversy, which should tell everyone involved that someone's ass is hung out to dry and they're feeling very vulnerable. just who that is and why they deserve the attention of the entire medical community and all the attendant journals is up for grabs, but you can bet someone's butt is worth a lot for that kind of heavy-duty protection to kick in. since the fda et al seem to be up for purchase - the pharma's win. again.
ReplyDeleteMhmmm, Shelly, I love how you connect, almost poetically, butt protecting - fda et al - up for grasps and the pharma. One has to appreciate your delicate way of describing a health care system truly rotten to it's core.
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