Thursday, September 29, 2011

Stop the Deaths: Share the ICC on ME.

ME has killed two dedicated patient advocates this week. Meanwhile, the ICC on ME (International Consensus Criteria on Myalgic Encephalomyelitis) have just been published. The ICC on ME could have saved those lives, if they had been guiding the victims' doctors early in their illness.

How can we stop the deaths? We need more research, we need better treatments, we've needed them for decades and while we wait, we die. Why are we dying for lack of appropriate medical care? The fight must be carried to many fronts including financial and political barriers to research, but as individual patients, perhaps the one thing that holds many of us back the most is lack of clear definition and prompt diagnosis. 

I myself might not have spent the last four years mostly-housebound, and my teenaged daughter might not have spent those same years mostly-bedridden, if the doctors we were seeing when we first fell ill had any notion of what they were dealing with. As it was, we went a year and a half undiagnosed.

A year and a half undiagnosed, is a year and a half untreated or mistreated. That year and a half of crucial time early in the illness translates to decades off of our life expectancy and immediate plummeting of our productivity.

Now multiply the loss of life-span and the loss of productivity by millions of patients.

If it did nothing else, the new ICC could help doctors identify the illness in its crucial early stage. Had we been diagnosed early, I might be in the work force and my kid could be a high school graduate attending a university.

The ICC represents the collaborative efforts of specialists from 13 nations, with a wealth of experience. We can encourage its adoption by the WHO, our national health agencies, and big research organizations in the corporate and academic world, but perhaps the most immediately effective thing we can do is for each and every one of us to print out this review in the Journal of Internal Medicine and take it to our own doctors.

It's a concise 12 pages. Give a copy to your primary care doctor, and if you're seeing a specialist give her one as well. Not only will this increase their understanding of the most current thought on your disease, if you have ME, but it may help save the lives of others yet to be diagnosed... or to be left dangling, wondering what's wrong with them while doctors scratch their heads.

"If you have ME," I said above, but most of all I want to encourage all the well folks to take this to their doctors, too. Tell the doctors that people with ME are dying for lack of a clear understanding of the definition and diagnosis of the disease. Tell them we want doctors to know, before more patients wind up as statistics of ME death.

EDIT: While sharing this in various places I have just learned of another death this week: A severe sufferer in the UK, aged 18, has just passed away. My own daughter lying in the next room as I write this is a severe sufferer, aged 18. PLEASE, please can the people who have not yet gotten sick take this disease seriously and take action.

Note: Credit for this action idea goes to Johan Mares in his brilliant blog, Life With ME/CFS.


  1. Thanks. I see a new doctor tomorrow and I had planned to give them report, then I forgot. This essay was very timely for me.

  2. Great thinking, Creek. I printed off the ICC and used one of those cheap plastic report binders to house it. It looked the business, and was received with thanks by my doctor. I wonder if she'll read it?

  3. Nice touch with the report cover, Jace! I hope she'll read it.

    I'm thinking my next step---now that I've printed one for my current doctor, and blogged up the idea---my next step is to send one to each doctor we've seen since we've got sick. I particularly hope the doctors who failed to diagnose us for 1.5 years will be open to learning something.

  4. Anonymous, I'm glad it was a timely reminder. Good luck with your doctor. Hope they read and learn!

  5. Concise and well writen Creek. The death of each of these people certainly hits at the heart of the community, but I am dumbfounded about the 18 year old. Having one of your own - I can only imagine your feelings.
    Will spread the word. Thanx! xx

  6. Thank you, Elise! This latest was by no means the only very young death of ME, but each new one makes it harder to ignore the danger. And with no cure of even any verified effective treatments, there's little I can do but try to push it out of my mind on a day-to-day basis, toss and turn at night, and keep pushing as much as my energy allows to try to get something happening in research and medicine for us all. Hope to stop the statistics, but how?

  7. Yes, without definitions at least as accurate as the ICC people are suffering and dying.